1 00:00:06,106 --> 00:00:09,609 ALL RIGHT GOOD MORNING EVERYONE. 2 00:00:09,676 --> 00:00:12,612 WELCOME TO THE DC LUPUS 3 00:00:12,679 --> 00:00:13,413 CONSORTIUM AND 30th 4 00:00:13,480 --> 00:00:15,582 ANNIVERSARY OF THE LUPUS 5 00:00:15,648 --> 00:00:16,149 CLINICAL RESEARCH. 6 00:00:16,216 --> 00:00:20,887 MY NAME IS JULIA ONYECHI, I AM A 7 00:00:20,954 --> 00:00:22,188 PHYSICIAN ASSISTANT WITH NIAMS 8 00:00:22,255 --> 00:00:26,092 AND I AM ALSO THE NIAMS LEAD 9 00:00:26,159 --> 00:00:28,061 FIGURE THE PROJECT HOPE CENTER. 10 00:00:28,128 --> 00:00:31,097 THIS WILL HIGHLIGHT THE 11 00:00:31,164 --> 00:00:32,365 OUTSTANDING PROGRESS MADE IN 12 00:00:32,432 --> 00:00:35,301 LUPUS BY THE NIH IN THE LAST 30 13 00:00:35,368 --> 00:00:36,836 YEARS, FEATURING TESTIMONIALS 14 00:00:36,903 --> 00:00:37,771 FROM RESEARCH PARTICIPANTS, 15 00:00:37,837 --> 00:00:39,506 UPDATES ON CURRENT LUPUS 16 00:00:39,572 --> 00:00:41,841 RESEARCH ACTIVITIES AT NIAMS AND 17 00:00:41,908 --> 00:00:43,410 DISCUSSION ON FUTURE DIRECTIONS 18 00:00:43,476 --> 00:00:46,513 OF RESEARCH AT THE NIH. 19 00:00:46,579 --> 00:00:49,482 THIS EVENT SEEKS TO BUILD ON THE 20 00:00:49,549 --> 00:00:54,120 SUCCESS OF THE DC LUPUS 21 00:00:54,187 --> 00:00:56,523 CONSORTIUM WHICH IS A PLATFORM 22 00:00:56,589 --> 00:00:58,491 TO COLLABORATE BETWEEN NE H 23 00:00:58,558 --> 00:00:59,192 SCIENTISTS, PHYSICIANS OUTSIDE 24 00:00:59,259 --> 00:01:01,227 OF THE NIH AND PATIENT ADVOCACY 25 00:01:01,294 --> 00:01:03,863 GROUPS INTERESTED IN THE LUPUS 26 00:01:03,930 --> 00:01:04,397 CLINICAL RESEARCH. 27 00:01:04,464 --> 00:01:05,999 WE HAVE A VERY PACKED ARK GENDA 28 00:01:06,065 --> 00:01:07,333 FOR YOU GUYS SO WE WILL GET 29 00:01:07,400 --> 00:01:10,937 STARTED RIGHT,A WAY. 30 00:01:11,004 --> 00:01:13,606 FIRST UP AND DR. LINDE CRISWELL, 31 00:01:13,673 --> 00:01:15,975 SHE IS THE DIRECTOR OF NIAMS AND 32 00:01:16,042 --> 00:01:18,244 SHE WILL GIVE AN INTRODUCTION ON 33 00:01:18,311 --> 00:01:19,646 THE DC LUPUS CONSORTIUM. 34 00:01:19,712 --> 00:01:21,314 PLEASE GIVE HER A WARM WELCOME. 35 00:01:21,381 --> 00:01:29,155 KD--SALLY ARK PLAWZ 36 00:01:29,222 --> 00:01:30,957 --[ APPLAUSE ] 37 00:01:31,024 --> 00:01:31,758 >> SO GOOD MORNING, EVERYONE AND 38 00:01:31,825 --> 00:01:34,093 WELCOME TO THE ANNUAL MEETING OF 39 00:01:34,160 --> 00:01:36,696 THE DC LUPUS CONSORTIUM, THIS 40 00:01:36,763 --> 00:01:38,298 YEAR'S MEETING IS A SPECIAL 1 OF 41 00:01:38,364 --> 00:01:39,566 COURSE BECAUSE WE'RE CELEBRATING 42 00:01:39,632 --> 00:01:41,334 30 YEARS OF LUPUS RESEARCH 43 00:01:41,401 --> 00:01:43,269 WITHIN THE LUPUS NATURAL HISTORY 44 00:01:43,336 --> 00:01:44,704 PROTOCOL HERE AT NIH AND THE 45 00:01:44,771 --> 00:01:46,873 FIRST TIME WE'VE MET IN PERSON 46 00:01:46,940 --> 00:01:49,142 SINCE THE COVID-19 PANDEMIC AND 47 00:01:49,209 --> 00:01:51,778 MY FIRST OPPORTUNITY TO ATTEND 48 00:01:51,845 --> 00:01:52,545 THIS MEETING. 49 00:01:52,612 --> 00:01:55,815 SO BEFORE WE START THOUGH, I 50 00:01:55,882 --> 00:02:00,987 WANT TO ACKNOWLEDGE MISS ELAINE 51 00:02:01,054 --> 00:02:03,189 PONCIEO, AND HER COLLEAGUES FOR 52 00:02:03,256 --> 00:02:04,390 THEIR TREMENDOUS EFFORTS IN 53 00:02:04,457 --> 00:02:05,124 ORGANIZING THIS MEETING. 54 00:02:05,191 --> 00:02:06,659 WE ARE HERE TO CELEBRATE AND 55 00:02:06,726 --> 00:02:09,429 RECOGNIZE THE PATIENTS, THE 56 00:02:09,496 --> 00:02:11,631 PROVIDERS, THE RESEARCHERS, AND 57 00:02:11,698 --> 00:02:13,867 THE ODORS VOCATES WHO SUPPORTED 58 00:02:13,933 --> 00:02:15,435 LUPUS RESEARCH AT THE CLINICAL 59 00:02:15,502 --> 00:02:17,170 CENTER FOR OVER 30IERS AND IN 60 00:02:17,237 --> 00:02:18,438 PARTICULAR WE ACKNOWLEDGE THOSE 61 00:02:18,505 --> 00:02:21,007 OF YOU WHO PARTICIPATED IN THE 62 00:02:21,074 --> 00:02:22,141 LUPUS NATURAL HISTORY PROTOCOL 63 00:02:22,208 --> 00:02:23,810 WHICH GOING ON ITS 30th YEAR. 64 00:02:23,877 --> 00:02:26,246 THIS EFFORT HAS BEEN 1 OF THE 65 00:02:26,312 --> 00:02:26,946 WORLD'S LARMINGEST LUPUS 66 00:02:27,013 --> 00:02:28,915 CLINICAL RESEARCH DATA SETS, AND 67 00:02:28,982 --> 00:02:31,317 ITS BECOME A RESOURCE TO BETTER 68 00:02:31,384 --> 00:02:33,419 UNDERSTAND AND CHARACTERIZE THE 69 00:02:33,486 --> 00:02:36,289 HETEROGENEITY OF LUPUS AND ALSO 70 00:02:36,356 --> 00:02:38,291 TO PROVIDE BIOLOGICAL SPECIMENS 71 00:02:38,358 --> 00:02:40,326 AND CLINICAL PHENOTYPES 72 00:02:40,393 --> 00:02:42,428 SUPPORTING LUPUS RESEARCH, SO I 73 00:02:42,495 --> 00:02:42,962 CONGRATULATE THE CLINICAL 74 00:02:43,029 --> 00:02:44,030 RESEARCH AUTOPSY SERIES FOR 75 00:02:44,097 --> 00:02:46,099 THEIR DEDICATION AND THEIR 76 00:02:46,165 --> 00:02:47,367 DILIGENT WORK OVER THE PAST 77 00:02:47,433 --> 00:02:50,036 SEVERAL YEARS AND TO EXPAND AND 78 00:02:50,103 --> 00:02:50,870 FURTHER STRENGTHEN THIS PROGRAM. 79 00:02:50,937 --> 00:02:52,872 FOR THOSE OF YOU NOT FAMILIAR, I 80 00:02:52,939 --> 00:02:54,841 WANT TO PROVIDE CONTEXT FOR 81 00:02:54,908 --> 00:02:55,875 WHERE THE LUPUS CLINICAL TRIALS 82 00:02:55,942 --> 00:02:58,311 UNIT FITS AMONG THE MANY LUPUS 83 00:02:58,378 --> 00:03:00,380 RESEARCH EFFORTS ACROSS NIH. 84 00:03:00,446 --> 00:03:02,916 THE NIH IS MADE UP OF 27 85 00:03:02,982 --> 00:03:04,517 INSTITUTES AND CENTERS AND IT'S 86 00:03:04,584 --> 00:03:05,485 THE LARGEST MEDICAL RESEARCH 87 00:03:05,552 --> 00:03:08,555 FUNDING AGENCY IN THE WORLD. 88 00:03:08,621 --> 00:03:10,423 AND ALTHOUGH NIAMS IS THE NIH 89 00:03:10,490 --> 00:03:12,158 LEAD FOR LUPUS RESEARCH, SEVERAL 90 00:03:12,225 --> 00:03:13,860 OTHER INSTITUTES AND CENTERS 91 00:03:13,927 --> 00:03:16,296 ALSO SUPPORT MEDICAL RESEARCH ON 92 00:03:16,362 --> 00:03:17,330 LUPUS AND OTHER AUTOIMMUNE 93 00:03:17,397 --> 00:03:18,831 DISEASES AND MANY RESEARCHERS 94 00:03:18,898 --> 00:03:21,034 FROM THOSE OTHER UNITS 95 00:03:21,100 --> 00:03:22,201 COLLABORATE WITH NIAMS 96 00:03:22,268 --> 00:03:23,436 INVESTIGATORS TO STUDY LUPUS AND 97 00:03:23,503 --> 00:03:25,471 TO CARE FOR LUPUS PATIENTS AT 98 00:03:25,538 --> 00:03:33,613 THE NIH CLINICAL CENTER. 99 00:03:33,680 --> 00:03:35,081 NIAMS IS LUPUS CLINICAL TRIALS 100 00:03:35,148 --> 00:03:37,317 UNIT SHOWN ON MY LEFT SIDE 101 00:03:37,383 --> 00:03:38,785 IMPLEMENTS PROTOCOLS IN SUPPORT 102 00:03:38,851 --> 00:03:40,587 OF EMERGING RESEARCH TOPICS AND 103 00:03:40,653 --> 00:03:42,655 THE DC LUPUS CONSORTIUM WAS 104 00:03:42,722 --> 00:03:44,157 ESTABLISHED BY THE LCTU ALMOST 105 00:03:44,223 --> 00:03:45,825 10 YEARS AGO TO BETTER CONNECT 106 00:03:45,892 --> 00:03:50,263 WITH LOCAL AND REGIONAL 107 00:03:50,330 --> 00:03:51,197 PHYSICIANS PATIENT ADVOCACY 108 00:03:51,264 --> 00:03:52,699 GROUPS AND ACADEMIC COMMUNITIES 109 00:03:52,765 --> 00:03:54,334 IN HOPES OF INCREASING AWARENESS 110 00:03:54,400 --> 00:03:56,102 OF IMPORTANT STUDIES AT THE NIH 111 00:03:56,169 --> 00:03:58,538 CLINICAL STUDY SUCH AS THE 112 00:03:58,605 --> 00:03:59,939 NATURAL HISTORY PROTOCOL AS WELL 113 00:04:00,006 --> 00:04:01,574 AS TO PROMOTE PARTNERSHIPS AND 114 00:04:01,641 --> 00:04:04,477 REFERRALS TO THE NIERK AMS LUPUS 115 00:04:04,544 --> 00:04:05,612 CLINICAL RESEARCH PROGRAM. 116 00:04:05,678 --> 00:04:06,446 SUCH EFFORTS ARE MUCH 117 00:04:06,512 --> 00:04:09,582 APPRECIATED AND WELL RESPECTED 118 00:04:09,649 --> 00:04:13,086 IN OUR COMMUNITIES AS MONTGOMERY 119 00:04:13,152 --> 00:04:14,587 COUNCIL MEMBER WILL 120 00:04:14,654 --> 00:04:15,655 [INDISCERNIBLE] RECOGNIZED THE 121 00:04:15,722 --> 00:04:18,791 WORK DONE BY NIH'S LCTU AND THE 122 00:04:18,858 --> 00:04:20,293 LUPUS CLINICAL RESEARCH PROGRAM 123 00:04:20,360 --> 00:04:23,129 IN HIS LUPUS AWARENESS MONTH 124 00:04:23,196 --> 00:04:24,397 PROCLAMATION LAST WEEK AND 125 00:04:24,464 --> 00:04:28,901 THERE'S A BEAUTIFUL PHOTO OF THE 126 00:04:28,968 --> 00:04:30,236 TEAM REPRESENTED ON THE RIGHT 127 00:04:30,303 --> 00:04:31,537 HAND SIDE OF THE SLIDE. 128 00:04:31,604 --> 00:04:33,506 BUT YOUR WORK IN THE FIELD HAS 129 00:04:33,573 --> 00:04:35,608 HAD A TREMENDOUS IMPACT, DECADES 130 00:04:35,675 --> 00:04:37,710 AGO, MANY PEOPLE WITH LUPUS DIED 131 00:04:37,777 --> 00:04:39,646 WITHIN 5 YEARS OF THEIR 132 00:04:39,712 --> 00:04:41,180 DIAGNOSIS, BUT TODAY THANKS TO 133 00:04:41,247 --> 00:04:41,914 COLLABORATIVE MEDICAL RESEARCH 134 00:04:41,981 --> 00:04:43,683 SUPPORTED BY THE NIH AND OTHERS, 135 00:04:43,750 --> 00:04:45,551 PEOPLE WITH LUPUS ARE LIVING 136 00:04:45,618 --> 00:04:47,587 LONGER MORE ACTIVE AND 137 00:04:47,654 --> 00:04:48,721 PRODUCTIVE LIVES. 138 00:04:48,788 --> 00:04:50,390 THE PAST 2 DECADES OF RESEARCH 139 00:04:50,456 --> 00:04:52,558 HAVE YIELDED A WEALTH OF NEW 140 00:04:52,625 --> 00:04:54,060 INFORMATION AND GROWTH IN 141 00:04:54,127 --> 00:04:56,829 IMPROVING OUR UNDERSTANDING OF 142 00:04:56,896 --> 00:04:57,630 LUPUS AND ITS CO-MORBIDITIES AND 143 00:04:57,697 --> 00:05:00,767 I WANT TO TAKE JUST A MOMENT TO 144 00:05:00,833 --> 00:05:02,402 HIGHLIGHT A FEW OF THESE 145 00:05:02,468 --> 00:05:03,336 IMPORTANT SUCCESSES. 146 00:05:03,403 --> 00:05:06,639 FOR EXAMPLE, WE NOW KNOW THAT 147 00:05:06,706 --> 00:05:08,508 MOST WOMEN WHO HAVE LUPUS CAN 148 00:05:08,574 --> 00:05:11,310 EXPECT A GOOD PREGNANCY IF THEIR 149 00:05:11,377 --> 00:05:13,279 DISEASE IS INACTIVE, WE CAN ALSO 150 00:05:13,346 --> 00:05:14,347 NOW IDENTIFY LUPUS PATIENTS WHO 151 00:05:14,414 --> 00:05:16,215 ARE AT THE HIGHEST RISK OF 152 00:05:16,282 --> 00:05:17,850 CARDIAC ISSUES AND WE ALSO HAVE 153 00:05:17,917 --> 00:05:19,485 NEW INSIGHT INTOS WHY WOMEN ARE 154 00:05:19,552 --> 00:05:21,120 AT SUCH GREATER RISK OF LUPUS 155 00:05:21,187 --> 00:05:22,655 THAN MEN, AND OF COURSE, 156 00:05:22,722 --> 00:05:25,858 IMPORTANTLY, WE HAVE NEWER DRUGS 157 00:05:25,925 --> 00:05:30,563 TO TREAT LUPUS, INCRUDING THE 158 00:05:30,630 --> 00:05:33,599 B-LYMPHOCYTE INHIBITOR, THE 159 00:05:33,666 --> 00:05:36,469 ANTAGONIST AND A CALCIUM 160 00:05:36,536 --> 00:05:37,103 [INDISCERNIBLE], SO DISCOVERIES 161 00:05:37,170 --> 00:05:39,172 LIKE THESE ARE A RESULT OF 162 00:05:39,238 --> 00:05:40,373 COLLABORATIONS AND NIH 163 00:05:40,440 --> 00:05:41,074 INVESTMENTS INCREASING OUR 164 00:05:41,140 --> 00:05:42,709 UNDERSTANDING OF THE MANY 165 00:05:42,775 --> 00:05:44,243 COMPLICATIONS OF LUPUS AND 166 00:05:44,310 --> 00:05:48,014 POTENTIALLY NEW WAYS TO TREAT 167 00:05:48,081 --> 00:05:48,347 THEM. 168 00:05:48,414 --> 00:05:50,983 NIAMS, APPRECIATES THE MANY 169 00:05:51,050 --> 00:05:52,385 STRONG PARTNERSHIPS WE HAVE IN 170 00:05:52,452 --> 00:05:53,820 THE LUPUS RESEARCH FIELD, FIRST 171 00:05:53,886 --> 00:05:54,854 AND FOREMOST WITHOUT THE SUPPORT 172 00:05:54,921 --> 00:05:57,223 OF OUR PATIENTS AND CAREGIVERS 173 00:05:57,290 --> 00:05:58,725 THOUGH, OUR EXPLORATIONS TO 174 00:05:58,791 --> 00:05:59,692 BETTER UNDERSTAND LUPUS WOULDN'T 175 00:05:59,759 --> 00:06:00,727 BE POSSIBLE SO YOU ARE AT THE 176 00:06:00,793 --> 00:06:04,630 HEART OF WHY WE DO WHAT WE DO. 177 00:06:04,697 --> 00:06:08,334 NIH ALSO PARTNERS WITH OTHER 178 00:06:08,401 --> 00:06:09,368 FEDERAL AGENCIES, PATIENT 179 00:06:09,435 --> 00:06:11,504 ADVOCACY GROUPS, PROFESSIONAL 180 00:06:11,571 --> 00:06:12,972 ORGANIZATIONS, ACADEMIA, PHARMA 181 00:06:13,039 --> 00:06:17,443 AND BIOCHECK INDUSTRIES TO TAKE 182 00:06:17,510 --> 00:06:18,978 A MULTIDISCIPLINARY APPROACH TO 183 00:06:19,045 --> 00:06:20,379 BETTER UNDERSTAND COMPLICATED 184 00:06:20,446 --> 00:06:21,380 DISEASES LIKE LUPUS. 185 00:06:21,447 --> 00:06:24,050 ONE EXAMPLE OF A VERY SUCCESSFUL 186 00:06:24,117 --> 00:06:26,819 AND WELL DESIGNED AND GOVERNED 187 00:06:26,886 --> 00:06:29,155 PUBLIC-PRIVATE PARTNERSHIP IS 188 00:06:29,222 --> 00:06:30,323 THE ACCELERATING MEDICINES 189 00:06:30,389 --> 00:06:31,758 PARTNERSHIP PROGRAMS OR AMP. 190 00:06:31,824 --> 00:06:34,827 THIS INVOLVES THE NIH, THE FDA, 191 00:06:34,894 --> 00:06:36,896 INDUSTRY, NONPROFIT GROUPS AND 192 00:06:36,963 --> 00:06:39,132 OTHER ORGANIZATIONS TO TACKLE 193 00:06:39,198 --> 00:06:41,033 COMPLICATED BIOMEDICAL RESEARCH 194 00:06:41,100 --> 00:06:43,703 QUESTIONS AND VERY FORTUNATELY, 195 00:06:43,770 --> 00:06:45,171 RHEUMATOID ARTHRITIS AND LUPUS 196 00:06:45,238 --> 00:06:46,873 WERE SELECTED AS THE FOCUS OF 1 197 00:06:46,939 --> 00:06:51,744 OF THE 4 ORIGINAL AMP PROGRAMS 198 00:06:51,811 --> 00:06:52,545 BACK IN 2014. 199 00:06:52,612 --> 00:06:54,614 THIS PROGRAM HAS YIELDED VERY 200 00:06:54,680 --> 00:06:56,482 EXCITING RESULTS THAT PROVIDE US 201 00:06:56,549 --> 00:06:58,584 WITH A BETTER UNDERSTANDING OF 202 00:06:58,651 --> 00:06:59,519 THE UNDERLYING PROCESSES, THAT 203 00:06:59,585 --> 00:07:02,655 CONTRIBUTE TO THESE DISEASES, 204 00:07:02,722 --> 00:07:03,823 FACILITATING THE IDENTIFICATION 205 00:07:03,890 --> 00:07:05,124 OF POTENTIAL NEW TARGETS AND 206 00:07:05,191 --> 00:07:07,627 DEVELOPMENT OF MORE EFFECTIVE 207 00:07:07,693 --> 00:07:07,927 TREATMENTS. 208 00:07:07,994 --> 00:07:10,596 NOW BECAUSE THAT PROGRAM HAS 209 00:07:10,663 --> 00:07:12,698 BEEN SO SUCCESSFUL, THE 210 00:07:12,765 --> 00:07:13,399 ROIMATOID ARTHRITIS LUPUS 211 00:07:13,466 --> 00:07:15,601 PROGRAM HAS NOW BEEN EXPANDED A 212 00:07:15,668 --> 00:07:19,906 COUPLE OF YEARS AGO TO INCLUDE 213 00:07:19,972 --> 00:07:21,874 SIR EYA SIS, SORTING 214 00:07:21,941 --> 00:07:26,846 SIGNALSIATIC AGERRITIS AND 215 00:07:26,913 --> 00:07:27,880 SOJGREN'S DISEASE EMPLOY ALSO 216 00:07:27,947 --> 00:07:30,082 WHAT WE LEARNED AND HOW 217 00:07:30,149 --> 00:07:30,783 IMPORTANT COLLABORATION, TEAM 218 00:07:30,850 --> 00:07:32,518 CONSCIENCE AND TRAINING THE NEXT 219 00:07:32,585 --> 00:07:34,120 GENERATION OF TEAM SCIENCE 220 00:07:34,187 --> 00:07:36,656 LEADERS ARE THOSE HAVE BEEN VERY 221 00:07:36,722 --> 00:07:38,558 WELL ACCELERATED IN THIS 222 00:07:38,624 --> 00:07:39,392 MEDICINE'S PARTNERSHIP PROGRAM. 223 00:07:39,458 --> 00:07:41,194 I WANT TO MENTION 1 OTHER 224 00:07:41,260 --> 00:07:42,228 IMPORTANT PARTNERSHIP YOU MAY 225 00:07:42,295 --> 00:07:44,864 NOT HAVE HEARD ABOUT YET BECAUSE 226 00:07:44,931 --> 00:07:46,866 IT'S RELATIVELY NEW, THE NEW 227 00:07:46,933 --> 00:07:48,434 OFFICE THEA NIH, THE OFFICE OF 228 00:07:48,501 --> 00:07:50,369 IMMUNE DISEASE RESEARCH AND THE 229 00:07:50,436 --> 00:07:51,437 INAUGURAL PROGRAM LAUNCHED OUT 230 00:07:51,504 --> 00:07:55,775 OF THIS NEW OFFICE IS CALLED THE 231 00:07:55,842 --> 00:07:58,211 EXPOETICSOME IN AUTOIMMUNE 232 00:07:58,277 --> 00:07:59,011 DISEASE COLLABORATING TEAMS, 233 00:07:59,078 --> 00:08:01,981 XACT, AND THE GOAL OF THIS 234 00:08:02,048 --> 00:08:03,716 EXCITING NEW EFFORT IS 235 00:08:03,783 --> 00:08:05,218 DISCOVERED ENVIRONMENTAL 236 00:08:05,284 --> 00:08:07,420 EXPOSURES THAT INFLUENCE DISEASE 237 00:08:07,486 --> 00:08:07,954 SUSCEPTIBILITY, ONSET AND 238 00:08:08,020 --> 00:08:11,691 OUTCOMES AND OUT OF THE INITIAL 239 00:08:11,757 --> 00:08:14,493 6, XACT REWARD RECIPIENTS OF 2 240 00:08:14,560 --> 00:08:16,295 OF THEM FOCUS ON LUPUS, SO 241 00:08:16,362 --> 00:08:17,897 THAT'S EXCITING NEWS FOR THIS 242 00:08:17,964 --> 00:08:18,798 COMMUNITY. 243 00:08:18,865 --> 00:08:20,800 BUT NETWORK IAMS ALSO 244 00:08:20,867 --> 00:08:22,668 COORDINATES THE LUPUS WORKING 245 00:08:22,735 --> 00:08:24,170 GROUP WHICH FACILITATES 246 00:08:24,237 --> 00:08:25,571 COLLABORATION AMONG NIH 247 00:08:25,638 --> 00:08:27,240 INSTITUTE ANDS CENTERS, OTHER 248 00:08:27,306 --> 00:08:28,241 AGENCIES, VOLUNTARY AND 249 00:08:28,307 --> 00:08:28,841 PROFESSIONAL ORGANIZATIONS AND 250 00:08:28,908 --> 00:08:30,843 INDUSTRY GROUP WHO IS SHARE AN 251 00:08:30,910 --> 00:08:31,744 INTEREST IN LUPUS. 252 00:08:31,811 --> 00:08:34,280 NOW WE ALSO PARTNER WITH 253 00:08:34,347 --> 00:08:35,214 PROFESSIONAL AND VOLUNTARY 254 00:08:35,281 --> 00:08:37,416 ORGANIZATIONS THROUGH A GROUP 255 00:08:37,483 --> 00:08:39,151 CALLED THE NIAMS COALITION WHICH 256 00:08:39,218 --> 00:08:41,354 IS HAN INDEPENDENT CONSORTIUM OF 257 00:08:41,420 --> 00:08:44,023 ORGANIZATIONS, WE HAVE OVER 90 258 00:08:44,090 --> 00:08:45,157 ORGANIZATIONS CURRENTLY THAT ARE 259 00:08:45,224 --> 00:08:47,260 NATIONAL IN SCOPE AND THROUGH 260 00:08:47,326 --> 00:08:49,395 THE COALITION, WE INVOLVE THE 261 00:08:49,462 --> 00:08:50,663 COMMUNITY IN SCIENTIFIC 262 00:08:50,730 --> 00:08:52,298 MEETINGS, ROUND TABLE DISCUSSION 263 00:08:52,365 --> 00:08:55,067 AND LISTENING SESSIONS THAT 264 00:08:55,134 --> 00:08:56,535 INFORM OUR ACTIVITIES. 265 00:08:56,602 --> 00:08:57,637 MEMBERS INCLUDE MANY OF THE 266 00:08:57,703 --> 00:08:58,771 ORGANIZATIONS THAT ARE HERE 267 00:08:58,838 --> 00:09:00,740 TODAY, SO THANK YOU SO MUCH FOR 268 00:09:00,806 --> 00:09:01,941 YOUR INVOLVEMENT. 269 00:09:02,008 --> 00:09:04,377 SO PARTNERSHIPS ARE POWERFUL AND 270 00:09:04,443 --> 00:09:07,713 BY COMBINING THE RESOURCES AND 271 00:09:07,780 --> 00:09:09,682 TALENTS OF GOVERNMENT, INDUSTRY, 272 00:09:09,749 --> 00:09:11,284 NONPROFITS AND ACADEME IMRA, WE 273 00:09:11,350 --> 00:09:12,685 CAN CONTINUE MAKING GREAT 274 00:09:12,752 --> 00:09:13,452 STRIDES IN LUPUS RESEARCH. 275 00:09:13,519 --> 00:09:15,955 SO I WOULD LIKE TO EMPHASIZE THE 276 00:09:16,022 --> 00:09:18,858 SIGNIFICANCE OF RESEARCH FOR 277 00:09:18,925 --> 00:09:20,726 ENABLING LONGER, HEALTHIER, AND 278 00:09:20,793 --> 00:09:22,361 MORE PRODUCTIVE LIVES FOR LUPUS 279 00:09:22,428 --> 00:09:23,796 PATIENTS AND REALLY ALL 280 00:09:23,863 --> 00:09:25,364 AMERICANS, THAT'S WHY WE'RE HERE 281 00:09:25,431 --> 00:09:26,432 AND WE RECOGNIZE OF COURSE, 282 00:09:26,499 --> 00:09:29,535 THOUGH THAT THERE ARE MANY MORE 283 00:09:29,602 --> 00:09:30,670 IMPORTANT QUESTIONS THAT NEED TO 284 00:09:30,736 --> 00:09:32,371 BE ANSWERED SO WE'RE COMMITTED 285 00:09:32,438 --> 00:09:34,473 TO CONTINUING TO SEEK THOSE 286 00:09:34,540 --> 00:09:36,142 ANSWERS AS YOU HEAR FROM THE 287 00:09:36,208 --> 00:09:38,077 SPEAKERS THIS MORNING, REMEMBER 288 00:09:38,144 --> 00:09:39,812 THAT WE'RE ALL WORKING TOGETHER 289 00:09:39,879 --> 00:09:41,881 TO ADVANCE LUPUS RESEARCH, 290 00:09:41,948 --> 00:09:43,983 EDUCATION AND AWARENESS AND THE 291 00:09:44,050 --> 00:09:46,385 DC LUPUS CONSORTIUM IS A VERY 292 00:09:46,452 --> 00:09:47,420 IMPORTANT CATALYST FOR LUPUS 293 00:09:47,486 --> 00:09:48,621 RESEARCH AND WE THANK YOU FOR 294 00:09:48,688 --> 00:09:50,289 YOUR IMPORTANT ROLE IN EXPANDING 295 00:09:50,356 --> 00:09:52,325 OUR LUPUS RESEARCH EFFORTS. 296 00:09:52,391 --> 00:09:52,825 SO THANK YOU VERY MUCH. 297 00:09:52,892 --> 00:09:55,928 I HOPE YOU ENJOY THE REST OF THE 298 00:09:55,995 --> 00:09:56,095 DAY. 299 00:09:56,162 --> 00:10:05,104 [ APPLAUSE ] 300 00:10:05,171 --> 00:10:07,506 >> THANK YOU DR. CRISWELL, NEXT 301 00:10:07,573 --> 00:10:09,475 WE HAVE DR. [INDISCERNIBLE] 302 00:10:09,542 --> 00:10:11,377 DIRECTOR OF CLINICAL RESEARCH AT 303 00:10:11,444 --> 00:10:13,612 NIAMS, HE WILL BE PRESENTING ON 304 00:10:13,679 --> 00:10:19,852 LUPUS RESEARCH TURNING 30 AT THE 305 00:10:19,919 --> 00:10:20,019 NIH. 306 00:10:20,086 --> 00:10:20,319 [ APPLAUSE ] 307 00:10:20,386 --> 00:10:23,089 >> THANK YOU SO MUCH JULIE AND 308 00:10:23,155 --> 00:10:24,123 GOOD MORNING EVERYONE. 309 00:10:24,190 --> 00:10:26,726 OKAY, SO FIRST OF ALL THANK YOU 310 00:10:26,792 --> 00:10:28,494 FOR COMING IN TODAY AND JOINING 311 00:10:28,561 --> 00:10:30,363 US AND I HOPE COMING TO THE NIH 312 00:10:30,429 --> 00:10:33,799 FOR THOSE WHO DON'T ON WORK HERE 313 00:10:33,866 --> 00:10:35,201 WON'T BE--WASN'T A BIG 314 00:10:35,267 --> 00:10:38,971 CHALLENGE, SOMETIMES IT CAN BE. 315 00:10:39,038 --> 00:10:40,906 SO I JUST WANT TO TALK A LITTLE 316 00:10:40,973 --> 00:10:45,211 BIT ABOUT THE POSTER THAT WE 317 00:10:45,277 --> 00:10:46,779 DESIGNED AND I THINK ALMOST ALL 318 00:10:46,846 --> 00:10:48,414 OF YOU SITTING IN THE AUDIENCE 319 00:10:48,481 --> 00:10:49,348 CAN ACKNOWLEDGE OR APPRECIATE 320 00:10:49,415 --> 00:10:51,450 THAT LUPUS IS A VERY 321 00:10:51,517 --> 00:10:52,585 HETEROGENEOUS DISEASE AND IT 322 00:10:52,651 --> 00:10:54,153 COMES IN ALL SHAPES AND FORMS, 323 00:10:54,220 --> 00:10:56,122 AND NOT ONLY THAT, THE PATIENTS, 324 00:10:56,188 --> 00:10:57,757 EACH AND EVERY PATIENT IS 325 00:10:57,823 --> 00:10:58,057 DIFFERENT. 326 00:10:58,124 --> 00:11:02,228 SO WE CHOSE THE BUTTERFLY WHICH 327 00:11:02,294 --> 00:11:04,196 USUALLY REPRESENT LUPUS BUT WE 328 00:11:04,263 --> 00:11:05,364 CHOOSE THE BUTTERFLY IN ALL 329 00:11:05,431 --> 00:11:07,800 DIFFERENT SHAPES AND SIZES, TO 330 00:11:07,867 --> 00:11:08,901 EMPHASIZE THE POINT THAT EACH 331 00:11:08,968 --> 00:11:11,170 AND EVERY PATIENT IS 332 00:11:11,237 --> 00:11:12,471 INDIVIDUALLY DIFFERENT AND THE 333 00:11:12,538 --> 00:11:14,840 DEC HAS SO MUCH HETEROGENEITY, 334 00:11:14,907 --> 00:11:16,342 SO THAT'S A BIT OF BACK GROWBD 335 00:11:16,409 --> 00:11:18,644 ABOUT WHAT THE POSTER IS ALL 336 00:11:18,711 --> 00:11:18,844 ABOUT. 337 00:11:18,911 --> 00:11:22,181 SO LET ME TAKE YOU BACK TO THE 338 00:11:22,248 --> 00:11:22,448 YEAR 1994. 339 00:11:22,515 --> 00:11:25,317 SOME OF YOU IN THE AUDIENCE LIKE 340 00:11:25,384 --> 00:11:28,020 ME, MAYBE OLD ENOUGH TO REMEMBER 341 00:11:28,087 --> 00:11:29,822 19, SOME MAY NOT BE. 342 00:11:29,889 --> 00:11:32,925 SO FOR THOSE WHO STILL REMEMBER, 343 00:11:32,992 --> 00:11:33,859 THEY WILL REMEMBER SOME OF THE 344 00:11:33,926 --> 00:11:36,495 THINGS THAT HAPPENED IN 19 SO 345 00:11:36,562 --> 00:11:41,200 YOU GOT MAIL, THAT WAS STARTED 346 00:11:41,267 --> 00:11:41,767 IN 19, [LAUGHTER] 347 00:11:41,834 --> 00:11:44,603 , AND THEN A POPULAR SERIES THAT 348 00:11:44,670 --> 00:11:49,608 WE STILL ENJOY WAS THERE, AND 349 00:11:49,675 --> 00:11:51,477 THEN THE WORLD ARENA NELSON 350 00:11:51,544 --> 00:11:54,213 MANDELA WAS ABLE TO CAST HIS 351 00:11:54,280 --> 00:11:56,549 VOTE FOR THE VERY FESTER TIME IN 352 00:11:56,615 --> 00:11:56,916 19. 353 00:11:56,982 --> 00:11:58,551 SO SIGNIFICANT YEAR, A LOT OF 354 00:11:58,617 --> 00:11:59,819 IMPORTANT THINGS HAPPENED AND 355 00:11:59,885 --> 00:12:02,288 THE NOBEL PRIZE WAS AWARDED FOR 356 00:12:02,354 --> 00:12:03,422 DISCOVERING THE G-PROTEIN WHICH 357 00:12:03,489 --> 00:12:05,424 LED TO SEVERAL SIGNIFICANT 358 00:12:05,491 --> 00:12:09,228 DISCOVERIES AND THERAPEUTIC 359 00:12:09,295 --> 00:12:11,197 TARGETS LATER ON BUT RIGHT HERE 360 00:12:11,263 --> 00:12:13,032 IN BETHESDA, SOMETHING ALSO VERY 361 00:12:13,099 --> 00:12:14,300 IMPORTANT AND INTERESTING 362 00:12:14,366 --> 00:12:15,601 HAPPENED IN 1994 AND THAT'S WHY 363 00:12:15,668 --> 00:12:17,336 WE ARE ALL HERE. 364 00:12:17,403 --> 00:12:20,439 SO THE STUDIES OF THE 365 00:12:20,506 --> 00:12:21,507 PATHOGENESIS AND NATURAL HISTORY 366 00:12:21,574 --> 00:12:24,510 OF SLE WAS ESTABLISHED IN 19 AT 367 00:12:24,577 --> 00:12:27,079 NIH AND THIS WAS THE STUDY THAT 368 00:12:27,146 --> 00:12:28,814 FORMALIZED THE LONG-TERM FOLLOW 369 00:12:28,881 --> 00:12:30,716 UP OF LUPUS PATIENTS AT THE NIH 370 00:12:30,783 --> 00:12:32,251 SO I DO RECOGNIZE THAT LUPUS 371 00:12:32,318 --> 00:12:33,986 RESEARCH HAS BEEN GOING ON AT 372 00:12:34,053 --> 00:12:37,857 THE NIH FOR MANY DECADES, EVEN 373 00:12:37,923 --> 00:12:39,859 BEFORE BACK TO 1994 BUT WE HAVE 374 00:12:39,925 --> 00:12:41,360 CHOSEN THIS YEAR, 19 AS A 375 00:12:41,427 --> 00:12:42,895 LANDMARK BECAUSE THIS IS THE 376 00:12:42,962 --> 00:12:44,964 LONGEST STUDY THAT HAS BEEN 377 00:12:45,030 --> 00:12:45,798 ONGOING CONTINUOUSLY FOR THE 378 00:12:45,865 --> 00:12:47,199 LAST 30 YEARS AND WE'VE BEEN 379 00:12:47,266 --> 00:12:48,033 FOLLOWING PATIENT AND SOME OF 380 00:12:48,100 --> 00:12:49,435 THE PATIENTS ARE HERE IN 381 00:12:49,502 --> 00:12:51,137 AUDIENCE WHO HAVE BEEN COMING 382 00:12:51,203 --> 00:12:54,140 HERE FOR THE LAST 30 YEARS SO 383 00:12:54,206 --> 00:12:56,542 THAT'S WHY WE SORT OF DECIDED TO 384 00:12:56,609 --> 00:12:59,645 USE THAT AS A LANDMARK WITH 385 00:12:59,712 --> 00:13:00,913 KEEPING IN MIND THAT IF THIS 386 00:13:00,980 --> 00:13:03,782 RESEARCH HAS BEEN GOING ON FOR 387 00:13:03,849 --> 00:13:07,520 EVEN SEVERAL DECK'SS BEFORE 388 00:13:07,586 --> 00:13:07,753 THAT. 389 00:13:07,820 --> 00:13:09,488 SO YOU KNOW, WHEN I STAND HERE, 390 00:13:09,555 --> 00:13:14,360 I UNDERSTAND THAT I STAND HERE 391 00:13:14,426 --> 00:13:16,562 IN TRYING TO FILL SHOES OF BIG 392 00:13:16,629 --> 00:13:19,532 GIANTS WHO FOLLOWED BEFORE ME, 393 00:13:19,598 --> 00:13:25,504 THE STUDY FIRST PI WAS 394 00:13:25,571 --> 00:13:26,739 DR. DIMITRI [INDISCERNIBLE] WHO 395 00:13:26,805 --> 00:13:28,807 WAS MOVED TO EUROPE, AND 396 00:13:28,874 --> 00:13:29,675 [INDISCERNIBLE] WAS THERE AND 397 00:13:29,742 --> 00:13:33,179 MARK [INDISCERNIBLE] WAS ALSO 1 398 00:13:33,245 --> 00:13:34,847 OF THE PIs AND I HAVE BEEN THE 399 00:13:34,914 --> 00:13:37,650 PI OF THIS STUDY FOR ALMOST 400 00:13:37,716 --> 00:13:40,219 12-13 YEARS NOW. 401 00:13:40,286 --> 00:13:42,755 SO, OVER THE NEXT 30 YEARS, WE 402 00:13:42,821 --> 00:13:44,823 HAVE DONE A LOT OF RESEARCH, WE 403 00:13:44,890 --> 00:13:47,126 HAVE TAKEN CARE OF PATIENTS, WE 404 00:13:47,193 --> 00:13:48,827 HAVE DONE ADVOCACY, WE HAVE DONE 405 00:13:48,894 --> 00:13:52,932 MULTIPLE THINGS AND MULTIPLE 406 00:13:52,998 --> 00:13:54,667 REALMS, AND WE HAVE MANY 407 00:13:54,733 --> 00:13:56,869 SUCCESSES, BUT AT THE SAME TIME 408 00:13:56,936 --> 00:13:59,505 WE HAVE SUCCESSES, WE ALSO HAVE 409 00:13:59,572 --> 00:14:01,207 SOME CHALLENGES AND SOME OF THE 410 00:14:01,273 --> 00:14:02,575 PARTNERS, SOME OF THE COLLEAGUES 411 00:14:02,641 --> 00:14:04,543 THAT STARTED THE JOURNEY WITH US 412 00:14:04,610 --> 00:14:06,745 ARE NOT HERE WITH US ANYMORE. 413 00:14:06,812 --> 00:14:09,582 SO SOME OF THE LUPUS RESEARCHERS 414 00:14:09,648 --> 00:14:10,916 FOR EXAMPLE, DR. GCORRELATED 415 00:14:10,983 --> 00:14:13,385 RLEY, WHO IS NOT WITH US ANYMORE 416 00:14:13,452 --> 00:14:14,820 AND WE HAVE LOST SOME OF THE 417 00:14:14,887 --> 00:14:17,122 PATIENTS, SO EVEN THOUGH WE 418 00:14:17,189 --> 00:14:18,691 CELEBRATE, WE ALSO WANT TO 419 00:14:18,757 --> 00:14:22,528 REMEMBER AND RECOGNIZE THOSE WHO 420 00:14:22,595 --> 00:14:24,663 HAVE LOST THE BATTLE THROUGH OUR 421 00:14:24,730 --> 00:14:26,232 THIS 30 YEARS AND IN HONOR OF 422 00:14:26,298 --> 00:14:27,533 THAT I WOULD REQUEST ALL OF YOU 423 00:14:27,600 --> 00:14:29,368 TO PLEASE STAND UP FOR A FEW 424 00:14:29,435 --> 00:14:31,470 SECONDS TO OBSERVE A MOMENT OF 425 00:14:31,537 --> 00:14:32,638 SILENCE FOR THOSE WHO ARE NOT 426 00:14:32,705 --> 00:14:35,808 WITH US ANYMORE AND HAVE LOST 427 00:14:35,874 --> 00:14:46,085 THE JOURNEY. 428 00:14:51,690 --> 00:14:52,057 THANK YOU. 429 00:14:52,124 --> 00:14:56,128 SO A LITTLE BIT ABOUT THE LUPUS 430 00:14:56,195 --> 00:14:57,329 RESEARCH AT NIH AND WHAT WE HAVE 431 00:14:57,396 --> 00:14:59,098 DONE AND WHAT WE HAVE 432 00:14:59,164 --> 00:14:59,431 ACCOMPLISHED. 433 00:14:59,498 --> 00:15:03,936 SO FAR OVER THE LAST 30 YEARS WE 434 00:15:04,003 --> 00:15:06,071 HAVE RECRUITED 1254 PATIENTS AND 435 00:15:06,138 --> 00:15:10,175 THE RECRUITMENT IS ONGOING AS 436 00:15:10,242 --> 00:15:11,677 DR. CRISWELL MENTIONED, THIS IS 437 00:15:11,744 --> 00:15:13,879 THE LONGEST COHORT OF FOLLOW UP 438 00:15:13,946 --> 00:15:15,314 PATES GOING ON FOR THE LONGEST 439 00:15:15,381 --> 00:15:16,515 TIME AROUND THE WORLD. 440 00:15:16,582 --> 00:15:18,851 WE PUBLISHED CLOSE TO 180 441 00:15:18,917 --> 00:15:19,084 STUDIES. 442 00:15:19,151 --> 00:15:20,719 WE HAVE DONE MULTIPLE CLINICAL 443 00:15:20,786 --> 00:15:21,053 TRIALS. 444 00:15:21,120 --> 00:15:22,688 SOME OF THEM ARE ONGOING, SOME 445 00:15:22,755 --> 00:15:25,658 OF THEM HAVE BEEN PUBLISHED AND 446 00:15:25,724 --> 00:15:27,926 THEN YOU CAN DO A PUB MED SEARCH 447 00:15:27,993 --> 00:15:30,362 TO LOOK THEM UP BUT WE HAVE MADE 448 00:15:30,429 --> 00:15:33,198 MAJOR CONTRIBUTIONS NOT ONLY TO 449 00:15:33,265 --> 00:15:34,600 PATIENT CARE, BUT ALSO TO 450 00:15:34,667 --> 00:15:35,534 ADVANCING THE SCIENCE AND 451 00:15:35,601 --> 00:15:39,571 BRIDGING THE GAP IN KNOWLEDGE OF 452 00:15:39,638 --> 00:15:40,372 UNDERSTANDING THE LUPUS. 453 00:15:40,439 --> 00:15:43,342 AT THE PRESENT OUR CURRENT 454 00:15:43,409 --> 00:15:45,978 COHORT OF LUPUS IS VERY ROBUST 455 00:15:46,045 --> 00:15:50,082 AND MULTIETHNIC, AND WE HAVE 456 00:15:50,149 --> 00:15:50,916 REPRESENTATIVE OF MULTILE 457 00:15:50,983 --> 00:15:52,318 ETHNICITIES, WE ARE TRYING TO 458 00:15:52,384 --> 00:15:55,521 MAKE IT MORE ROBUST AND MORE 459 00:15:55,587 --> 00:15:57,256 PROPORTIONATE IN TERMS OF 460 00:15:57,323 --> 00:16:00,559 PRESENTATION, NOT ONLY IS THAT 461 00:16:00,626 --> 00:16:03,629 IT'S RACIALLY ROBUST AND 462 00:16:03,696 --> 00:16:06,198 DIVERSIFIED AND WE ALSO HAVE GIO 463 00:16:06,265 --> 00:16:06,899 GRAPHICALLY DIVERSE POPULATIONS, 464 00:16:06,965 --> 00:16:09,234 SO WE HAVE PATIENTS COMING FROM 465 00:16:09,301 --> 00:16:12,338 MOSTLY FROM THE DMV AREA, BUT 466 00:16:12,404 --> 00:16:14,673 FROM MULTIPLE AREAS OF PARTS OF 467 00:16:14,740 --> 00:16:16,141 THE UNITED STATES AS WELL AS A 468 00:16:16,208 --> 00:16:17,543 LOT OF INTERNATIONAL PATIENT WHO 469 00:16:17,609 --> 00:16:19,745 IS COME AND SEEK SECOND OPINION 470 00:16:19,812 --> 00:16:22,681 OR PARTICIPATE IN RESEARCH AND 471 00:16:22,748 --> 00:16:24,049 THEN YOU COME HERE ONCE A YEAR 472 00:16:24,116 --> 00:16:25,417 OR SO AND A LOT OF THEM HAVE 473 00:16:25,484 --> 00:16:28,721 BEEN COMING HERE FOR A LONG TIME 474 00:16:28,787 --> 00:16:30,389 EMPLOY SO LUPUS RESEARCHERS AT 475 00:16:30,456 --> 00:16:34,193 THE NIH, WE DO A LOT OF 476 00:16:34,259 --> 00:16:34,793 COMPLICATED LUPUS PATIENT 477 00:16:34,860 --> 00:16:39,832 REFERENCE WE GET FROM THE 478 00:16:39,898 --> 00:16:40,499 CONSORTIUM OUR COLLEAGUES SEND 479 00:16:40,566 --> 00:16:45,304 THEM TO US FOR A SECOND OPINION, 480 00:16:45,371 --> 00:16:47,806 WE ALSO PLAN AND CONDUCT MAJOR 481 00:16:47,873 --> 00:16:52,611 TRIALS BASED ON DISCOVERIES IN 482 00:16:52,678 --> 00:16:53,679 THE EPITHELIAL RAMIEWR AND 483 00:16:53,746 --> 00:16:56,548 EXTRAMURAL PROGRAM AND WE HAVE A 484 00:16:56,615 --> 00:16:58,283 LOT OF COLLABORATIVE PROJECTS 485 00:16:58,350 --> 00:17:03,355 AND THE DC CONSORTIUM WE 486 00:17:03,422 --> 00:17:04,523 ESTABLISHED 30 YEARS AGO AND WE 487 00:17:04,590 --> 00:17:08,494 COME TOGETHER ONCE AIER TO 488 00:17:08,560 --> 00:17:09,895 DISCUSS WHAT SHOULD WE DO NEXT 489 00:17:09,962 --> 00:17:11,196 IN LUPUS RESEARCH AND WE ALSO 490 00:17:11,263 --> 00:17:12,598 INFORM WHAT WE HAVE DONE, WHAT 491 00:17:12,664 --> 00:17:15,000 WE HAVE LEARNED ABOUT LUPUS TO 492 00:17:15,067 --> 00:17:16,201 OUR PATIENTS TO OUR 493 00:17:16,268 --> 00:17:17,136 COLLABORATORS AND SO FORTH AND 494 00:17:17,202 --> 00:17:20,272 IT HAS BEEN A VERY SUCCESSFUL 495 00:17:20,339 --> 00:17:20,539 ENDEAVOR. 496 00:17:20,606 --> 00:17:23,142 IN ADDITION TO THAT WE ARE ALSO 497 00:17:23,208 --> 00:17:30,015 ACTIVELY INVOLVED IN PATIENT 498 00:17:30,082 --> 00:17:32,985 EDUCATION IN TERMS OF WE ALL DO 499 00:17:33,051 --> 00:17:33,652 TRAINING AND MENTORSHIP 500 00:17:33,719 --> 00:17:35,120 ACTIVITIES AND A LOT OF TRAINING 501 00:17:35,187 --> 00:17:36,989 GOING ON HERE AND OVERALL IT HAS 502 00:17:37,055 --> 00:17:43,061 FROM A RATHER SMALLER SET UP TO 503 00:17:43,128 --> 00:17:45,330 A VERY HUGE SET UP TO 504 00:17:45,397 --> 00:17:45,931 MULTIDIMENSIONALKIVITYS SO I 505 00:17:45,998 --> 00:17:47,599 WOULD SAY THAT THERE ARE BRIGHT 506 00:17:47,666 --> 00:17:49,134 FUTURES AHEAD AND WE ARE ALL 507 00:17:49,201 --> 00:17:51,069 HOPEFUL THAT WE WILL MAKE MORE 508 00:17:51,136 --> 00:17:51,804 DISCOVERIES WITH THE 509 00:17:51,870 --> 00:17:54,540 CONTRIBUTIONS FROM OUR PATIENTS 510 00:17:54,606 --> 00:17:56,375 AND WE WILL LEARN MORE ABOUT 511 00:17:56,442 --> 00:18:00,512 LUPUS AND WE WILL 1 DAY HOPE TO 512 00:18:00,579 --> 00:18:02,347 SOLVE THIS CRUEL MYSTERY. 513 00:18:02,414 --> 00:18:04,950 SO, THIS IS OUR LUPUS CLINICAL 514 00:18:05,017 --> 00:18:08,654 TRIALS UNIT AND YOU WILL SEE 515 00:18:08,720 --> 00:18:10,088 MULTIPLE PEOPLE OF OUR UNIT 516 00:18:10,155 --> 00:18:11,023 WORKING AROUND HERE, SOME ARE 517 00:18:11,089 --> 00:18:12,891 HERE IN THE AUDIENCE, SOME ARE 518 00:18:12,958 --> 00:18:13,826 OUTSIDE HELPING OUT AND I DO 519 00:18:13,892 --> 00:18:18,397 WANT TO GIVE A SHOUT OUT TO ALL 520 00:18:18,464 --> 00:18:19,731 THE VOLUNTEERS SO TO SET UP THIS 521 00:18:19,798 --> 00:18:22,034 EVENT IT TOOK AN ENORMOUS EFFORT 522 00:18:22,100 --> 00:18:22,734 FROM MULTIPLE, MULTIPLE PEOPLE 523 00:18:22,801 --> 00:18:24,837 AND A LOT OF PEOPLE WORKED 524 00:18:24,903 --> 00:18:28,106 BEHIND THE SCENES TO GET THIS 525 00:18:28,173 --> 00:18:31,143 EVENT DONE AT THIS HUGE LEVEL 526 00:18:31,210 --> 00:18:33,011 AND I CANNOT NAME EACH AND EVERY 527 00:18:33,078 --> 00:18:34,313 1 BECAUSE I MAY FORGET 528 00:18:34,379 --> 00:18:35,814 SOMEBODY'S NAME AND I MAY GET IN 529 00:18:35,881 --> 00:18:37,783 TROUBLE BUT I DO WANT TO GIVE A 530 00:18:37,850 --> 00:18:39,751 SHOUT OUT TO 2 PEOPLE WHO HAVE 531 00:18:39,818 --> 00:18:47,726 BEEN VERY INSTRUMENTAL IN THIS, 532 00:18:47,793 --> 00:18:49,495 SO [INDISCERNIBLE] AND 533 00:18:49,561 --> 00:18:50,362 [INDISCERNIBLE] AND THEY ARE 534 00:18:50,429 --> 00:18:54,566 BOTH HERE AND THANK YOU SO MUCH. 535 00:18:54,633 --> 00:18:56,869 AND AND THEN I WOULD SAY, THANK 536 00:18:56,935 --> 00:18:58,804 YOU FOR EVERYONE FOR COMING 537 00:18:58,871 --> 00:18:59,972 HERE, THANK YOU ESPECIALLY TO 538 00:19:00,038 --> 00:19:01,373 ALL THE PATIENTS WHO HAVE 539 00:19:01,440 --> 00:19:02,941 CONTRIBUTED SO MUCH AND WITHOUT 540 00:19:03,008 --> 00:19:03,742 OUR PATIENTS, OBVIOUSLY WE WILL 541 00:19:03,809 --> 00:19:09,047 NOT BE ABLE TO DO ANYTHING. 542 00:19:09,114 --> 00:19:11,617 SO THANK YOU FOR BEING SO 543 00:19:11,683 --> 00:19:12,551 ALTRUISTIC, CONTRIBUTING TO 544 00:19:12,618 --> 00:19:13,652 RESEARCH HERE, DOING THANK YOU 545 00:19:13,719 --> 00:19:14,586 TO ALL THE FAMILIES AND FRIEND 546 00:19:14,653 --> 00:19:16,421 WHO IS SUPPORT THE PATIENTS AND 547 00:19:16,488 --> 00:19:17,523 ALL THE VOLUNTEERS AND ALL THE 548 00:19:17,589 --> 00:19:21,059 COLLEAGUES WHO ARE HERE, AND I 549 00:19:21,126 --> 00:19:23,662 HOPE THAT YOU'LL ENJOY THE EVENT 550 00:19:23,729 --> 00:19:25,130 TODAY, THANK YOU. 551 00:19:25,197 --> 00:19:34,606 [ APPLAUSE ] 552 00:19:34,673 --> 00:19:38,043 >> THANK YOU DOCTOR, NEXT UP WE 553 00:19:38,110 --> 00:19:39,912 HAVE DR. COLBERT, HE IS THE 554 00:19:39,978 --> 00:19:44,583 DIRECTOR OF NIARK MS AND HE WILL 555 00:19:44,650 --> 00:19:46,251 GIVE AN NIAMS OVERVIEW, GIVE HIM 556 00:19:46,318 --> 00:19:49,454 A WARM WELCOME. 557 00:19:49,521 --> 00:19:50,389 >> THANK YOU JULIE. 558 00:19:50,455 --> 00:19:50,822 WELCOME EVERYBODY. 559 00:19:50,889 --> 00:19:53,625 IT'S NICE TO SEE SUCH A PACKED 560 00:19:53,692 --> 00:19:53,992 AUDITORIUM. 561 00:19:54,059 --> 00:19:57,062 SO, AS JULIE MENTIONED, 562 00:19:57,129 --> 00:19:57,863 DR. [INDISCERNIBLE] ASKED IF I 563 00:19:57,930 --> 00:20:00,766 COULD GIVE A BRIEF OVERVIEW OF 564 00:20:00,832 --> 00:20:01,600 THE NIAMS INTRAMURAL RESEARCH 565 00:20:01,667 --> 00:20:03,869 PROGRAM AND ALSO TO FOCUS A 566 00:20:03,936 --> 00:20:12,978 LINGS BIT ON JUST THE SUPPORT 567 00:20:13,045 --> 00:20:14,146 THAT THE NIAMS SUPPORT THAT IT 568 00:20:14,212 --> 00:20:15,447 PUTS INTO THE RESEARCH. 569 00:20:15,514 --> 00:20:17,049 SO THE 1 THING YOU ARE AT THAT 570 00:20:17,115 --> 00:20:21,253 TIME SUPPOSED TO DO TO--THAT YOU 571 00:20:21,320 --> 00:20:23,522 ARE NOT SUPPOSED TO START WITH 572 00:20:23,589 --> 00:20:25,824 IS A ORGCHART BUT I WILL MAKE A 573 00:20:25,891 --> 00:20:26,024 POINT. 574 00:20:26,091 --> 00:20:27,726 FIRST I WILL TART WITH THE FACT 575 00:20:27,793 --> 00:20:29,494 THAT WE ARE A MEDIUM SIZED 576 00:20:29,561 --> 00:20:31,697 EN--STRATEGIESITUTE, WE HAVE A 577 00:20:31,763 --> 00:20:32,864 MEDIUM SIZED IMPOSSIBLE TO BUILD 578 00:20:32,931 --> 00:20:33,465 RAMURAL PROGRAM AND CLINICAL 579 00:20:33,532 --> 00:20:34,766 PROGRAM BUT I THINK WE DO QUITE 580 00:20:34,833 --> 00:20:36,068 A BIT AND I'M REALLY PROUD OF 581 00:20:36,134 --> 00:20:37,469 THAT SO WHAT THIS SLIDE SHOWS 582 00:20:37,536 --> 00:20:39,905 YOU IS HOW WE'RE DIVIDED INTO 583 00:20:39,972 --> 00:20:42,207 DIFFERENT LABS AND SECTIONS AND 584 00:20:42,274 --> 00:20:43,275 UNITS, ET CETERA, YOU DON'T NEED 585 00:20:43,342 --> 00:20:45,944 TO LOOK AT ALL THOSE DETAILS. 586 00:20:46,011 --> 00:20:50,148 WHAT I HIGHLIGHTED IN PURPLE, IS 587 00:20:50,215 --> 00:20:51,550 VARIOUS EFFORTS THAT ARE 588 00:20:51,617 --> 00:20:52,584 INVOLVED THIS CLINICAL RESEARCH 589 00:20:52,651 --> 00:20:55,587 AND THEN EACH SECTION THAT HAS 590 00:20:55,654 --> 00:20:57,189 AN ASTERISK HAS SOMETHING TO DO 591 00:20:57,255 --> 00:20:58,156 WITH LUPUS RESEARCH AND I WILL 592 00:20:58,223 --> 00:21:02,794 GO INTO A FEW OF THOSE AREAS. 593 00:21:02,861 --> 00:21:05,897 WE HAVE A LITTLE OVER 40 594 00:21:05,964 --> 00:21:07,432 CLINICAL AND RESEARCH FACULTY OF 595 00:21:07,499 --> 00:21:08,900 SENIOR INVESTIGATORS TO EARLY 596 00:21:08,967 --> 00:21:11,169 CAREER INVESTIGATORS AND A 597 00:21:11,236 --> 00:21:14,706 COUPLE OF ADJUNCT INVESTIGATORS 598 00:21:14,773 --> 00:21:15,273 FROM OTHER INSTITUTES. 599 00:21:15,340 --> 00:21:18,243 SO THIS IS A DIFFERENT VIEW NOW 600 00:21:18,310 --> 00:21:20,012 OF THE CLINICAL PROGRAM, TELLING 601 00:21:20,078 --> 00:21:22,214 YOU THAT WE NOT ONLY DO LUPUS 602 00:21:22,280 --> 00:21:24,683 RESEARCH BUT WE ACTUALLY DO 603 00:21:24,750 --> 00:21:25,851 RESEARCH IN SEVERAL OTHER 604 00:21:25,917 --> 00:21:27,819 DISEASES AND A SIGNIFICANT 605 00:21:27,886 --> 00:21:31,023 PROPORTION OF RESOURCES GO TO 606 00:21:31,089 --> 00:21:31,757 DERMATOLOGY RESEARCH, SO YOU CAN 607 00:21:31,823 --> 00:21:34,993 SEE IN THE BLUE, THAT'S THE 608 00:21:35,060 --> 00:21:37,663 UPPER LEFT, WE BASIC SKIN 609 00:21:37,729 --> 00:21:39,297 IMMUNOLOGY RESEARCH, MICROBIOME 610 00:21:39,364 --> 00:21:40,399 RESEARCH, CAR SIN O GENESIS 611 00:21:40,465 --> 00:21:43,568 RESEARCH, WE HAVE A SIGNIFICANT 612 00:21:43,635 --> 00:21:44,503 VASC LIGHT ISOTOPE RESEARCH 613 00:21:44,569 --> 00:21:53,211 PROGRAM AND WE ALSO DO 614 00:21:53,278 --> 00:21:54,279 SPONDYLOROSIS AND ARTHRITIS 615 00:21:54,346 --> 00:21:54,546 RESEARCH. 616 00:21:54,613 --> 00:21:57,482 WE DO CONSULT SERVICES FOR 617 00:21:57,549 --> 00:21:58,984 RHEUMATOLOGY IN ARK DULT AND 618 00:21:59,051 --> 00:22:00,185 PEDIATRIC BUT THE REASON O 619 00:22:00,252 --> 00:22:01,853 REASON WE'RE HERE TODAY IS TO 620 00:22:01,920 --> 00:22:03,855 TALK ABOUT WAWE DO IN LUPUS 621 00:22:03,922 --> 00:22:05,357 RELATED RESEARCH WHICH IS SHOWN 622 00:22:05,424 --> 00:22:10,262 IN THE ORANGE OVALS IN THE 623 00:22:10,328 --> 00:22:11,930 BOTTOM. 624 00:22:11,997 --> 00:22:13,598 SO OVERALL ABOUT 25% OF THE 625 00:22:13,665 --> 00:22:16,768 CLINICAL PROGRAM RESOURCES GO TO 626 00:22:16,835 --> 00:22:22,107 LUPUS AND SYSTEMIC AUTOIMMUNITY. 627 00:22:22,174 --> 00:22:25,077 ANOTHER--LET'S SEE IF I CAN MAKE 628 00:22:25,143 --> 00:22:26,011 IT WORK. 629 00:22:26,078 --> 00:22:27,713 ANOTHER 30% GOES TO FELLOWSHIP 630 00:22:27,779 --> 00:22:29,181 AND EARLY CAREER INVESTIGATOR 631 00:22:29,247 --> 00:22:31,016 PATHWAYS, THAT'S SCHOLARS AND 632 00:22:31,083 --> 00:22:32,284 CLINICAL ASSISTANT INVESTIGATORS 633 00:22:32,350 --> 00:22:35,053 IN ADDITION TO OUR RHEUMATOLOGY 634 00:22:35,120 --> 00:22:37,589 FELLOWS, ABOUT 15% TOWARDS 635 00:22:37,656 --> 00:22:38,223 SYSTEMIC VASC LIGHTIS RESEARCH 636 00:22:38,290 --> 00:22:40,492 AND THEN THE REST IS DIVIDED 637 00:22:40,559 --> 00:22:43,662 AMONGST THE OTHER DISEASE AREAS 638 00:22:43,729 --> 00:22:48,300 THAT I MENTIONED TO YOU. 639 00:22:48,366 --> 00:22:50,869 SO I WANT TO TAKE A COUPLE 640 00:22:50,936 --> 00:22:53,371 MINUTES AND HIGHLIGHT SOME OF 641 00:22:53,438 --> 00:22:54,206 THE INDIVIDUALS WHO YOU'VE HEARD 642 00:22:54,272 --> 00:22:55,307 ABOUT AND YOU WILL HEAR FROM IN 643 00:22:55,373 --> 00:22:57,342 THE REST OF THE PROGRAM AND JUST 644 00:22:57,409 --> 00:23:00,011 TO SAY THAT WHILE THIS IS 645 00:23:00,078 --> 00:23:01,279 ABSOLUTELY A TEAM EFFORT, THE 646 00:23:01,346 --> 00:23:04,549 TEAM IS LED BY DR. MARRIANA 647 00:23:04,616 --> 00:23:05,851 KAPLAN WHO IS A SENIOR 648 00:23:05,917 --> 00:23:08,386 INVESTIGATOR AND CHIEF OF THE 649 00:23:08,453 --> 00:23:09,654 SYSTEMIC AUTOIMMUNITY BRANCH AND 650 00:23:09,721 --> 00:23:12,991 MARRIANA IS AN NIH DISTINGUISHED 651 00:23:13,058 --> 00:23:13,658 INVESTIGATOR. 652 00:23:13,725 --> 00:23:16,828 SHE WILL BE TALKING SHORTLY IN 653 00:23:16,895 --> 00:23:18,196 THE PROGRAM. 654 00:23:18,263 --> 00:23:20,699 IN ADDITION, YOU'VE OBVIOUSLY 655 00:23:20,766 --> 00:23:24,169 HEARD FROM DR. HASNI, HE'S DONE 656 00:23:24,236 --> 00:23:26,138 A WONDERFUL YOB CORPS OF 657 00:23:26,204 --> 00:23:27,439 ORGANIZING THE TEAM AND THE 658 00:23:27,506 --> 00:23:28,673 PROGRAM. 659 00:23:28,740 --> 00:23:30,876 HE'S THE DIRECTOR OF THE 660 00:23:30,942 --> 00:23:32,144 CLINICAL TRIALS LUPUS UNIT. 661 00:23:32,210 --> 00:23:33,445 AND ANOTHER STAFF CLINICIAN WHO 662 00:23:33,512 --> 00:23:36,448 WILL YOU HEAR FROM LATER 663 00:23:36,515 --> 00:23:37,482 DR. GUPTA IS INTERESTED IN HOW 664 00:23:37,549 --> 00:23:39,484 WE CAN LEARN FROM RARE GENETIC 665 00:23:39,551 --> 00:23:40,786 DISEASES ABOUT PATHWAYS THAT 666 00:23:40,852 --> 00:23:45,090 BECOME ACTIVATED IN SYSTEMIC 667 00:23:45,157 --> 00:23:47,492 LUPUS, DR. FRANCO IS A TENURED 668 00:23:47,559 --> 00:23:48,660 TRACK INVESTIGATOR WHO IS 669 00:23:48,727 --> 00:23:51,329 INTERESTED IN UNDERSTANDING MORE 670 00:23:51,396 --> 00:23:55,233 ABOUT HOW GLUE CO CORTICOIDS 671 00:23:55,300 --> 00:23:57,302 WORK, A TREMENDOUS AREA FOR 672 00:23:57,369 --> 00:23:59,037 LUPUS AND OTHER RHEUM TO LOGIC 673 00:23:59,104 --> 00:23:59,304 DISEASES. 674 00:23:59,371 --> 00:24:04,442 YOU WILL HEAR ALSO FROM 675 00:24:04,509 --> 00:24:05,510 DR. LAURA LEWANDOWSKI, SHE'S A 676 00:24:05,577 --> 00:24:06,211 CLINICAL RATHER AND HE'S 677 00:24:06,278 --> 00:24:07,879 INTERESTED THIS THE GENETICS OF 678 00:24:07,946 --> 00:24:10,649 LUPUS FROM A GLOBAL PERSPECTIVE. 679 00:24:10,715 --> 00:24:12,384 WE HAVE 2 SCHOLARS IN 680 00:24:12,450 --> 00:24:14,019 TRANSLATIONAL RESEARCH WHO WORK 681 00:24:14,085 --> 00:24:18,523 IN LUPUS RELATED AREAS, WILL 682 00:24:18,590 --> 00:24:21,426 AMBLER WHO IS IN DR. KAPLAN'S 683 00:24:21,493 --> 00:24:22,961 LAB AND HE'S INTERESTED IN 684 00:24:23,028 --> 00:24:25,964 UNDERSTANDING MORE ABOUT HOW SEX 685 00:24:26,031 --> 00:24:27,232 DIFFERENCES INFLUENCE THE IMMUNE 686 00:24:27,299 --> 00:24:28,066 RESPONSE WHICH IS VERY IMPORTANT 687 00:24:28,133 --> 00:24:30,101 IN MANY OF OUR AUTOIMMUNE 688 00:24:30,168 --> 00:24:32,704 DISEASES AND DR. MEGAN NELSON, 689 00:24:32,771 --> 00:24:35,240 DR. NELSON WORKS WITH 690 00:24:35,307 --> 00:24:36,775 DR. CRISWELL, WHO WE HEARD FROM 691 00:24:36,842 --> 00:24:42,514 SHE'S INTERESTED IN THE GENETICS 692 00:24:42,581 --> 00:24:46,251 OF LUPUS IN LUPUS ASIAN 693 00:24:46,318 --> 00:24:47,018 POPULATIONS. 694 00:24:47,085 --> 00:24:49,588 SO THE LUPUS TEAM HAS 2 695 00:24:49,654 --> 00:24:52,190 OUTSTANDING PROVIDERS, UNIAND 696 00:24:52,257 --> 00:24:53,458 MICHAEL, JUNE WILL TELL YOU 697 00:24:53,525 --> 00:24:55,093 ABOUT THE QUALITY INDICATOR 698 00:24:55,160 --> 00:24:56,595 PROJECTS SHE'S BEEN WORKING ON 699 00:24:56,661 --> 00:24:58,797 WITH THE LUPUS TEAM AND MICHAEL 700 00:24:58,864 --> 00:25:02,834 WILL UPDATE YOU ON THE 701 00:25:02,901 --> 00:25:04,536 ANTIFROLIMAB STUDY, THERE ARE 3 702 00:25:04,603 --> 00:25:06,638 RESEARCH COORDINATORS IN THE 703 00:25:06,705 --> 00:25:08,073 PROGRAM, ELAINE, AND LUPNA, AND 704 00:25:08,139 --> 00:25:15,480 YOU WILL HEAR FROM ELAINE AND 705 00:25:15,547 --> 00:25:16,081 YENEALEM, AND THEY INTERVIEW 706 00:25:16,147 --> 00:25:17,349 SOME OF THE PATIENT WHO IS ARE 707 00:25:17,415 --> 00:25:18,650 HERE TODAY AND LAST BUT NOT 708 00:25:18,717 --> 00:25:21,353 LEAST WE HAVE THE VOTER 709 00:25:21,419 --> 00:25:23,388 IMPORTANT PATIENT CARE 710 00:25:23,455 --> 00:25:23,855 COORDINATORS. 711 00:25:23,922 --> 00:25:24,589 ISOTOPE BELLA HAS BEEN 712 00:25:24,656 --> 00:25:26,825 INTRODUCED TO YOU AND EMILY 713 00:25:26,892 --> 00:25:28,026 JONES, EMILY WE NEED A PICTURE 714 00:25:28,093 --> 00:25:31,329 OF YOU FOR THE WEBSITE. 715 00:25:31,396 --> 00:25:33,832 THE LUPUS TEAM ALSO HAS CLINICAL 716 00:25:33,899 --> 00:25:37,202 RESEARCH SPECIALIST DR. NAQI AND 717 00:25:37,269 --> 00:25:39,938 DR. MANNA WHO ARE HERE TODAY AS 718 00:25:40,005 --> 00:25:40,138 WELL. 719 00:25:40,205 --> 00:25:42,173 SO I WANT TO FINISH UP WITH A 720 00:25:42,240 --> 00:25:43,909 PICTURE YOU'VE SEEN BEFORE, 721 00:25:43,975 --> 00:25:45,677 EMILY DID GET CAPTURED BY THE 722 00:25:45,744 --> 00:25:47,746 PHOTOGRAPHER HERE, AND ALSO I 723 00:25:47,812 --> 00:25:51,049 WANTED TO MENTION DR. CHRISTINA 724 00:25:51,116 --> 00:25:52,884 [INDISCERNIBLE] CHRISTINA IS 725 00:25:52,951 --> 00:25:57,756 ALSO A MEMBER OF DR. CRISWELL'S 726 00:25:57,822 --> 00:25:58,156 RESEARCH PROGRAM. 727 00:25:58,223 --> 00:25:59,190 SHE'S A THROW A FOOTBALL 728 00:25:59,257 --> 00:26:00,926 CLINICIAN AND SHE'S DOES LUPUS 729 00:26:00,992 --> 00:26:02,394 RESEARCH AND HELPS OUT 730 00:26:02,460 --> 00:26:03,528 SIGNIFICANTLY IN THE LUPUS 731 00:26:03,595 --> 00:26:04,562 CLINIC SO THANK YOU FOR YOUR 732 00:26:04,629 --> 00:26:05,630 EXPOSURE TO RADIATIONS AND THANK 733 00:26:05,697 --> 00:26:08,500 YOU TO THE ENTIRE LUPUS TEAM. 734 00:26:08,566 --> 00:26:10,735 YOU MAKE US VERY PROUD, BUT MORE 735 00:26:10,802 --> 00:26:13,939 IMPORTANTLY, YOU DO A TREMENDOUS 736 00:26:14,005 --> 00:26:15,807 AMOUNT FOR OUR PATIENTS, PUSHING 737 00:26:15,874 --> 00:26:17,208 THE NEEDLE FORWARD IN TERMS OF 738 00:26:17,275 --> 00:26:18,376 RESEARCH BUT ALSO THE 739 00:26:18,443 --> 00:26:20,645 OUTSTANDING CARE THAT YOU 740 00:26:20,712 --> 00:26:21,579 DELIVER. 741 00:26:21,646 --> 00:26:30,088 SO THANK YOU VERY MUCH. 742 00:26:30,155 --> 00:26:31,589 [ APPLAUSE ] 743 00:26:31,656 --> 00:26:33,291 >> THANK YOU DOCTOR, NEXT WE 744 00:26:33,358 --> 00:26:36,361 WOULD LIKE TO TAKE THIS MOMENT 745 00:26:36,428 --> 00:26:37,662 TO RECOGNIZE DR. GENE 746 00:26:37,729 --> 00:26:39,497 [INDISCERNIBLE]. 747 00:26:39,564 --> 00:26:49,941 HE IS FORMER CLINICAL DIRECTOR 748 00:26:50,008 --> 00:26:52,277 OF NIDDK TO SAY A FEW WORDS. 749 00:26:52,344 --> 00:26:56,448 OKAY, THANK YOU AGAIN, JULIE. 750 00:26:56,514 --> 00:26:57,816 SO AGAIN, DOING RESEARCH IN 751 00:26:57,882 --> 00:27:00,885 LUPUS IS NOT POSSIBLE WITHOUT 752 00:27:00,952 --> 00:27:03,021 COLLABORATION AND COLLABORATIVE 753 00:27:03,088 --> 00:27:05,290 EFFORT AND I THINK DR. BALO, 754 00:27:05,357 --> 00:27:07,792 MANY OF THE IN THE AUDIENCE 755 00:27:07,859 --> 00:27:09,527 RECOGNIZE HIM VERY WELL FOR THE 756 00:27:09,594 --> 00:27:11,229 CONTRIBUTIONS HE HAS MADE AND 757 00:27:11,296 --> 00:27:13,298 HAVE MADE A SIGNIFICANT IMPACT 758 00:27:13,365 --> 00:27:15,467 IN CLINICAL RESEARCH WHICH HAS 759 00:27:15,533 --> 00:27:17,102 CHANGED THE LIFE OF MANY 760 00:27:17,168 --> 00:27:18,269 PATIENTS AROUND THE WORLD, NOT 761 00:27:18,336 --> 00:27:21,272 ONLY IN THE UNITED STATES, SO 762 00:27:21,339 --> 00:27:24,709 DR. BALO CAME TO THE NIH IN 763 00:27:24,776 --> 00:27:26,945 1972, AS A CLINICAL SOCIETY 764 00:27:27,012 --> 00:27:29,080 STUDYING IMIEWNLOLOGY, HE 765 00:27:29,147 --> 00:27:30,248 DEVELOPED THE FIRST INHOUSE 766 00:27:30,315 --> 00:27:31,549 NEPHROLOGY SERVICE FOR PATIENTS 767 00:27:31,616 --> 00:27:34,152 AT THE NIH CLINICAL CENTER ASK 768 00:27:34,219 --> 00:27:36,688 CLINICAL NEPHROLOGY. 769 00:27:36,755 --> 00:27:38,323 DR. BALO'S CLINICAL SERVICE GREW 770 00:27:38,390 --> 00:27:40,058 EXPONENTIALLY AND AS HIS 771 00:27:40,125 --> 00:27:40,992 REPUTATION AFTER SEVERAL YEARS 772 00:27:41,059 --> 00:27:43,428 HE'S BEEN THERE, THEN HE STARTED 773 00:27:43,495 --> 00:27:45,997 AS A PHYSICIAN AT THE NATIONAL 774 00:27:46,064 --> 00:27:47,399 INSTITUTES OF ARTHRITIS AND 775 00:27:47,465 --> 00:27:50,268 METABOLIC DISEASE WHICH WAS THE 776 00:27:50,335 --> 00:27:53,071 PREDECESSOR INSTITUTE OF NIAMS 777 00:27:53,138 --> 00:27:54,773 AND NIDDK. 778 00:27:54,839 --> 00:27:57,142 AFTER JOINING IN 1997, HE 779 00:27:57,208 --> 00:28:00,178 DEVELOPED A WORLD CLASS CLINICAL 780 00:28:00,245 --> 00:28:02,480 RESEARCH PROGRAM ON 781 00:28:02,547 --> 00:28:03,014 IMMUNOLOGICALLY MEDIATED 782 00:28:03,081 --> 00:28:03,982 [INDISCERNIBLE] DISEASE AND HE 783 00:28:04,049 --> 00:28:05,316 QUICKLY ROSE THROUGH THE RANKS 784 00:28:05,383 --> 00:28:08,520 OF THE NIH, BECAME THE CHIEF OF 785 00:28:08,586 --> 00:28:12,357 THE NEVERROLOGY SERVICES, AND 786 00:28:12,424 --> 00:28:15,427 THEN AFTER THAT HE JOINED THE 787 00:28:15,493 --> 00:28:17,829 NIDDK'S CLINICAL DIRECTOR IN 788 00:28:17,896 --> 00:28:21,599 1988 AND THIS IS A POSITION HE 789 00:28:21,666 --> 00:28:24,669 HELD FOR 31 YEARS WHO BECAME THE 790 00:28:24,736 --> 00:28:25,737 LONGEST SERVING CLINICAL 791 00:28:25,804 --> 00:28:31,543 DIRECTOR AT THE NIH AND AFTER 792 00:28:31,609 --> 00:28:34,312 THIS LONG ILLUSTRIOUS CAREER, HE 793 00:28:34,379 --> 00:28:38,049 RETIRED FROM THE CLINICAL 794 00:28:38,116 --> 00:28:38,783 DIRECTOR POSITION IN 2022 AND 795 00:28:38,850 --> 00:28:43,221 AFTER THAT HE SERVED AS AN 796 00:28:43,288 --> 00:28:45,924 ACTING CHIEF FOR SINCE 797 00:28:45,990 --> 00:28:46,624 JULY 2022. 798 00:28:46,691 --> 00:28:50,695 HE'S WIDELY RECOGNIZED AN EXPERT 799 00:28:50,762 --> 00:28:53,064 IN GLUE MERRIAL DISEASES 800 00:28:53,131 --> 00:28:54,466 PARTICULARLY IN FOR LUPUS 801 00:28:54,532 --> 00:28:56,234 NEPHRITIS AND HAS BEEN INVOLVED 802 00:28:56,301 --> 00:28:58,069 IN THE PIVOTAL TRIALS WHICH HAS 803 00:28:58,136 --> 00:29:00,772 LED TO THE SO CALLED NIH 804 00:29:00,839 --> 00:29:03,975 PROTOCOL FOR TREATMENT OF LUPUS 805 00:29:04,042 --> 00:29:04,542 NEPHRITIS USING PSYCHOFOSTER 806 00:29:04,609 --> 00:29:05,310 NURSED FOCUSED ON MADE WHICH HAS 807 00:29:05,376 --> 00:29:06,411 BEEN USED ALL OVER THE WORLD. 808 00:29:06,478 --> 00:29:13,985 HE HAS PUBLISHED OVER 250 PAPES 809 00:29:14,052 --> 00:29:15,620 AND CHAPTERS AND HE ALSO HELPED 810 00:29:15,687 --> 00:29:17,255 US TREAT A LOT OF PATIENTS 811 00:29:17,322 --> 00:29:21,759 THROUGH THE RENAL CONSULTATION 812 00:29:21,826 --> 00:29:25,130 SERVICE. 813 00:29:25,196 --> 00:29:26,798 HE HAS TAUGHT OWL OF US 814 00:29:26,865 --> 00:29:28,099 INCLUDING ME ABOUT HOW TO LOOK 815 00:29:28,166 --> 00:29:30,168 AT KIDNEY PATHOLOGY AND LOOKING 816 00:29:30,235 --> 00:29:30,835 AT THE MICROSCOPE TO UNDERSTANDS 817 00:29:30,902 --> 00:29:32,437 WHAT IS GOING ON AND HE IS VERY 818 00:29:32,504 --> 00:29:35,373 GOOD IN TERMS OF CORRELATING 819 00:29:35,440 --> 00:29:37,275 THAT WITH THE CLINICAL SYMPTOMS 820 00:29:37,342 --> 00:29:38,810 THAT HAS BEEN GOING ON WITH THE 821 00:29:38,877 --> 00:29:40,044 PATIENT. 822 00:29:40,111 --> 00:29:42,747 HE HAS RECEIVED SEVERAL AWARDS 823 00:29:42,814 --> 00:29:47,218 INCLUDING THE NIH CLINICAL 824 00:29:47,285 --> 00:29:48,620 DIRECTORS AWARD, PUBLIC SERVICE 825 00:29:48,686 --> 00:29:51,890 AWARD, AWARD FROM VARIOUS OTHER 826 00:29:51,956 --> 00:29:53,291 OUTSIDE INSTITUTIONS, NIH 827 00:29:53,358 --> 00:29:55,560 DIRECTOR'S AWARD, AND THEN 828 00:29:55,627 --> 00:29:56,861 DR. BALO CONTINUES TO 829 00:29:56,928 --> 00:29:59,030 PARTICIPATE IN PROVIDING 830 00:29:59,097 --> 00:30:00,465 GUIDANCE AND MENTORSHIP TO 831 00:30:00,532 --> 00:30:01,733 TRAINERS AND INVESTIGATORS IN 832 00:30:01,799 --> 00:30:02,567 THE KIDNEY DISEASE BRANCH. 833 00:30:02,634 --> 00:30:07,238 HE WILL CONTINUE TO ADVISE IN 834 00:30:07,305 --> 00:30:07,839 CLINICAL CONSULTATIVE MATTERS 835 00:30:07,906 --> 00:30:10,375 GIVEN HIS YEARS OF EXPERTISE IN 836 00:30:10,441 --> 00:30:11,676 CLINICAL NEPHROLOGY, SO IT'S A 837 00:30:11,743 --> 00:30:13,912 BRIEF INTRODUCTION BUT I WOULD 838 00:30:13,978 --> 00:30:17,415 LIKE JIM TO PLEASE--HERE. 839 00:30:17,482 --> 00:30:27,692 [ APPLAUSE ] 840 00:30:32,197 --> 00:30:33,998 >> WELL, THANK YOU SO FOR FOR 841 00:30:34,065 --> 00:30:34,499 YOUR GENEROUS COMMENT. 842 00:30:34,566 --> 00:30:35,667 I DIDN'T KNOW WHO YOU WERE 843 00:30:35,733 --> 00:30:38,269 TALKING ABOUT AT FESTER BUT I 844 00:30:38,336 --> 00:30:40,705 DID CATCH THE DRIFT SOONER OR 845 00:30:40,772 --> 00:30:42,040 LATER. 846 00:30:42,106 --> 00:30:46,277 I CAME IN 1972 AS WAS MENTIONED 847 00:30:46,344 --> 00:30:50,081 AND I CAME TO WORK IN NIAID, I 848 00:30:50,148 --> 00:30:52,784 WAS 1 OF TONY FAUCI'S FIRST 849 00:30:52,850 --> 00:30:55,687 FELLOWS AND BEING TRAINED IN 850 00:30:55,753 --> 00:30:58,623 NEPHROLOGY, I ACTUALLY HELPED 851 00:30:58,690 --> 00:30:59,824 DEVELOP THE PROGRAMS THROUGHOUT 852 00:30:59,891 --> 00:31:03,661 THE CLINICAL CENTER, BUT I SAW 853 00:31:03,728 --> 00:31:07,699 THE GREATEST OPPORTUNITY TO 854 00:31:07,765 --> 00:31:12,136 REALLY INTERACT IN DEEP 855 00:31:12,203 --> 00:31:16,174 COLLABORATION WITH RHEUMATOLOGY 856 00:31:16,241 --> 00:31:16,407 FACULTY. 857 00:31:16,474 --> 00:31:18,810 MY GREATEST MENTOR IN THE LUPUS 858 00:31:18,876 --> 00:31:20,845 AREA WAS JOHN DECKER WHO IS NO 859 00:31:20,912 --> 00:31:23,214 LONGER WITH US. 860 00:31:23,281 --> 00:31:30,321 OTHERS LIKE PAUL CLAUS, FRED, 861 00:31:30,388 --> 00:31:33,925 JACK, AND THEN ORIGEINALLY I 862 00:31:33,992 --> 00:31:35,226 ENVISIONED THAT--ORIGEINALLILY I 863 00:31:35,293 --> 00:31:36,694 ENVISIONED THAT PEOPLE LIKE 864 00:31:36,761 --> 00:31:37,996 WILLIAM [INDISCERNIBLE] WERE 865 00:31:38,062 --> 00:31:38,663 CONFUSED ABOUT LUPUS. 866 00:31:38,730 --> 00:31:42,400 YOU KNOW HE BASICALLY CONSIDERED 867 00:31:42,467 --> 00:31:47,171 THERE WAS A SKIN DISEASE THAT 868 00:31:47,238 --> 00:31:49,607 WAS RELATED TO ARATHEMA GROUP OF 869 00:31:49,674 --> 00:31:51,609 SKIN DISEASES AND IT DID INCLUDE 870 00:31:51,676 --> 00:31:53,111 LUPUS AND I ENVISIONED IF WE 871 00:31:53,177 --> 00:31:55,580 COULD TEASE ALL THAT APART, WE 872 00:31:55,647 --> 00:31:59,884 WOULD FIND 1 SINGLE DISEASE THAT 873 00:31:59,951 --> 00:32:01,286 WAS REALLY BENEFITING LUPUS AS 874 00:32:01,352 --> 00:32:03,054 OPPOSE TO A MISHMASH OF LOTS AND 875 00:32:03,121 --> 00:32:06,224 LOTS OF DIFFERENT THINGS 876 00:32:06,291 --> 00:32:09,827 ENCLUEDING GLUE MERRIAL 877 00:32:09,894 --> 00:32:10,895 NEPHRITIS, ENDOCARTITEIS, 878 00:32:10,962 --> 00:32:11,562 RHEUMATOID ARTHRITIS, EVERYTHING 879 00:32:11,629 --> 00:32:16,801 SEEM TO HAVE BEEN A MIX OF 880 00:32:16,868 --> 00:32:20,305 SYNDROMES BACK IN THOSE EARLY 881 00:32:20,371 --> 00:32:28,846 DAYS BUT NAIVE ETICSY OVER THE 882 00:32:28,913 --> 00:32:30,715 YEARS, LUPUS ISN'T JUST 1 883 00:32:30,782 --> 00:32:33,785 DISEASE, IT'S MOSTLY A SYNDROME 884 00:32:33,851 --> 00:32:37,522 COMPOSED OF DIFFERENT 885 00:32:37,588 --> 00:32:37,822 COMPONENTS. 886 00:32:37,889 --> 00:32:42,927 THE KIDNEY DISEASE WHICH IS MY 887 00:32:42,994 --> 00:32:43,695 PARTICULAR PROFESSIONAL LOVE 888 00:32:43,761 --> 00:32:47,365 BEING A VERY PROMINENT FACTOR IN 889 00:32:47,432 --> 00:32:50,368 THE PROGNOSIS OF LUPUS AND I'M 890 00:32:50,435 --> 00:32:53,071 JUST SO GRATIFIED TO HAVE MET A 891 00:32:53,137 --> 00:32:55,907 FEW PATIENTS WHO CAME UP TO ME 892 00:32:55,973 --> 00:32:56,874 THIS MORNING. 893 00:32:56,941 --> 00:32:59,143 IT REALLY WAS HEART WARMING TO 894 00:32:59,210 --> 00:33:03,247 SEE YOU AND TO SEE HOW WELL YOU 895 00:33:03,314 --> 00:33:08,686 HAVE DONE OVER THE YEARS. 896 00:33:08,753 --> 00:33:09,854 BUT, AGAIN, AS [INDISCERNIBLE] 897 00:33:09,921 --> 00:33:15,393 HAS SHOWN US, THE SUCCESSES HAVE 898 00:33:15,460 --> 00:33:17,762 BEEN VERY REWARDING BUT THEY'RE 899 00:33:17,829 --> 00:33:18,863 NOT ALWAYS SUCCESSFUL SO WE HAVE 900 00:33:18,930 --> 00:33:24,268 TO KEEP ON WITH THE BATTLE. 901 00:33:24,335 --> 00:33:26,137 I'M VERY HUMBLED BY THE AWARD 902 00:33:26,204 --> 00:33:29,374 AND THIS RECOGNITION, BUT I'M 903 00:33:29,440 --> 00:33:29,974 REALLY DEEPLY TOUCHED. 904 00:33:30,041 --> 00:33:33,578 SO THANK YOU ALL FOR WHAT YOU'VE 905 00:33:33,644 --> 00:33:35,213 GIVEN TO ME OVER THE YEARS 906 00:33:35,279 --> 00:33:44,055 BECAUSE I'VE LEARNED SO MUCH AND 907 00:33:44,122 --> 00:33:47,191 I HOPE I'VE GIVEN JUST A LITTLE 908 00:33:47,258 --> 00:33:47,625 BACK. 909 00:33:47,692 --> 00:33:47,892 THANK YOU. 910 00:33:47,959 --> 00:33:48,226 [ APPLAUSE ] 911 00:33:48,292 --> 00:33:49,394 >> WE HAD A LITTLE SOMETHING FOR 912 00:33:49,460 --> 00:33:57,402 YOU BUT IT'S ON ITS WAY. 913 00:33:57,468 --> 00:33:58,903 SO EVERYTHING--IF IT MAYBES IT 914 00:33:58,970 --> 00:34:02,774 IN TIME, WE WILL ASK YOU AGAIN 915 00:34:02,840 --> 00:34:03,975 BUT YOU KNOW THANK YOU VERY 916 00:34:04,041 --> 00:34:08,946 MUCH. 917 00:34:09,013 --> 00:34:09,147 SORRY. 918 00:34:09,213 --> 00:34:09,847 [ APPLAUSE ] 919 00:34:09,914 --> 00:34:12,583 >> THANK YOU DR. HASNI, THANK 920 00:34:12,650 --> 00:34:15,353 YOU DR. BALOW, OUR NEXT SPEAKER 921 00:34:15,420 --> 00:34:17,722 IS DR. MEGAN MOCKWOOD, SHE IS 922 00:34:17,789 --> 00:34:19,357 ASSISTANT PROFESSOR OF MEDICINE 923 00:34:19,424 --> 00:34:20,258 AT GEORGETOWN UNIVERSITY. 924 00:34:20,324 --> 00:34:22,427 SHE'S THE DIRECTOR OF LUPUS 925 00:34:22,493 --> 00:34:23,194 PROGRAM AT GEORGETOWN UNIVERSITY 926 00:34:23,261 --> 00:34:24,896 HOSPITAL AND SHE WILL BE 927 00:34:24,962 --> 00:34:27,432 SPEAKING ON IMPROVING LUPUS 928 00:34:27,498 --> 00:34:28,366 OUTCOMES THROUGH PARTICIPATION 929 00:34:28,433 --> 00:34:29,200 IN CLINICAL RESEARCH, PLEASE 930 00:34:29,267 --> 00:34:39,677 GIVE HER A WARM WELCOME. 931 00:34:41,779 --> 00:34:42,380 >> GOOD MORNING. 932 00:34:42,447 --> 00:34:43,381 I'M SO DELIGHTED TO BE HERE AND 933 00:34:43,448 --> 00:34:44,515 THANK YOU VERY MUCH FOR THE 934 00:34:44,582 --> 00:34:45,349 INVITATION TO SPEAK ABOUT A 935 00:34:45,416 --> 00:34:47,385 TOPIC THAT I THINK IS IMPORTANT 936 00:34:47,452 --> 00:34:53,257 TO ALL OF US IN THIS ROOM. 937 00:34:53,324 --> 00:34:55,860 I WANT TO TART BY SAYING THAT 938 00:34:55,927 --> 00:34:57,562 THE ACCURATE REPRESENTATION OF 939 00:34:57,628 --> 00:34:58,763 PATIENT FIST CLINICAL TRIALS NOT 940 00:34:58,830 --> 00:35:01,098 ONLY HELPS TO FIGHT HEALTH 941 00:35:01,165 --> 00:35:01,999 DISPARITIES AND HEALTH 942 00:35:02,066 --> 00:35:04,502 INIQUITIES BUT IT'S JUST GOOD 943 00:35:04,569 --> 00:35:04,769 SCIENCE. 944 00:35:04,836 --> 00:35:08,105 AND THAT'S WHY IT'S CRITICAL 945 00:35:08,172 --> 00:35:09,373 THAT PARTICIPANTS ACCURATELY 946 00:35:09,440 --> 00:35:13,911 REPRESENT THE POPULATIONS THAT 947 00:35:13,978 --> 00:35:14,512 POTENTIAL MEDICATIONS ARE 948 00:35:14,579 --> 00:35:16,614 DESIGNED TO TREAT AND DESPITE A 949 00:35:16,681 --> 00:35:17,982 GREATER PREVALENCE OF LUPUS 950 00:35:18,049 --> 00:35:20,451 AMONG RACIAL AND ETHNIC 951 00:35:20,518 --> 00:35:21,853 MINORITIES, MARKET GAPS EXIST 952 00:35:21,919 --> 00:35:23,120 BETWEEN POPULATIONS AFFECTED BY 953 00:35:23,187 --> 00:35:25,823 LUPUS AND THOSE ENROLL INDEED 954 00:35:25,890 --> 00:35:26,190 CLINICAL TRIALS. 955 00:35:26,257 --> 00:35:28,359 SO THE CHART ON THE LEFT 956 00:35:28,426 --> 00:35:29,227 REPRESENTS THE PREVALENCE OF 957 00:35:29,293 --> 00:35:30,728 LUPUS, YOU CAN SEE THAT BLACK 958 00:35:30,795 --> 00:35:33,364 PEOPLE IN PURPLE MAKE UP A 959 00:35:33,431 --> 00:35:35,900 PREVALENT 43% OF LUPUS CASES, 960 00:35:35,967 --> 00:35:37,301 THE CHARTOT RIGHT, SHOWS THE 961 00:35:37,368 --> 00:35:38,769 NUMBER OF PATIENTS REPRESENTED 962 00:35:38,836 --> 00:35:42,139 IN CLINICAL TRIALS, AND YOU CAN 963 00:35:42,206 --> 00:35:43,541 SEE THAT BLACK PEOPLE ONLY MAKE 964 00:35:43,608 --> 00:35:46,711 UP 14% OF PATES IN CLINICAL 965 00:35:46,777 --> 00:35:47,812 LUPUS TRIALS. 966 00:35:47,879 --> 00:35:49,213 IN CONTRAST, GOING BACK TO THE 967 00:35:49,280 --> 00:35:50,982 CHART ON THE LEFT, YOU CAN SEE 968 00:35:51,048 --> 00:35:54,051 HERE THAT 33% OF PREVALENT LUPUS 969 00:35:54,118 --> 00:35:57,154 CASES ARE IN WHITE PEOPLE BUT 970 00:35:57,221 --> 00:35:58,489 THEY'RE VASTLY OVERREPRESENTED 971 00:35:58,556 --> 00:36:00,424 IN LUPUS CLINICAL TRIALS, MAKING 972 00:36:00,491 --> 00:36:02,560 UP OVER 50% OF THE PARTICIPANTS 973 00:36:02,627 --> 00:36:05,029 IN LUPUS CLINICAL TRIALS. 974 00:36:05,096 --> 00:36:06,464 AND WHAT WE'RE HERE TODAY TO 975 00:36:06,531 --> 00:36:08,065 TALK ABOUT LUPUS, THIS IS REALLY 976 00:36:08,132 --> 00:36:10,167 NOT JUST A PROBLEM IN LUPUS, 977 00:36:10,234 --> 00:36:12,803 THIS IS A PROBLEM IN ALL 978 00:36:12,870 --> 00:36:13,771 CLINICAL TRIALS AND ALL 979 00:36:13,838 --> 00:36:15,439 DISEASES, THE CHART ON THE LEFT 980 00:36:15,506 --> 00:36:18,309 DISPLAYS DATA FROM THE U.S. 981 00:36:18,376 --> 00:36:19,377 CENSUS, THAT SHOWS THAT 60% OF 982 00:36:19,443 --> 00:36:20,912 THE PEOPLE IN THIS COUNTRY ARE 983 00:36:20,978 --> 00:36:23,347 WHITE AND THE LIGHT BLUE, BUT 984 00:36:23,414 --> 00:36:25,917 COMPARING THIS TO THE U.S. TRIAL 985 00:36:25,983 --> 00:36:26,751 STATISTICS AS REPRESENTED IN THE 986 00:36:26,817 --> 00:36:28,653 CHART ON THE RIGHT, CAN YOU 987 00:36:28,719 --> 00:36:31,155 AGAIN SEE THAT WHITE PATIENTS 988 00:36:31,222 --> 00:36:35,993 ARE VASTLY OVERREPRESENTED IN 989 00:36:36,060 --> 00:36:37,495 CLINICAL TRIALS AT 80% SO THE 990 00:36:37,562 --> 00:36:39,030 POINT HERE IS NOT THAT WE WANT 991 00:36:39,096 --> 00:36:41,032 TO DISCOURAGE WHITE PATIENTS 992 00:36:41,098 --> 00:36:41,566 FROM PARTICIPATE NOTHING 993 00:36:41,632 --> 00:36:43,000 CLINICAL TRIALS BUT RATHER WE 994 00:36:43,067 --> 00:36:44,201 WANT TO ENCOURAGE THE 995 00:36:44,268 --> 00:36:48,573 PARTICIPATION OF EVERYBODY ELSE. 996 00:36:48,639 --> 00:36:50,007 AND THIS HAS REALLY LED TO A 997 00:36:50,074 --> 00:36:51,442 DATA GAP IN LUPUS, AND I WOULD 998 00:36:51,509 --> 00:36:53,945 ARGUE THAT THIS IS NOT JUST A 999 00:36:54,011 --> 00:36:56,013 RESEARCH PROGRAM BUT A SOCIAL 1000 00:36:56,080 --> 00:36:58,683 JUSTICE PROGRAM AND WHEN GROUPS 1001 00:36:58,749 --> 00:37:01,152 OF PEOPLE ARE NOT ACCURATELY 1002 00:37:01,218 --> 00:37:01,886 REPRESENTED IN CLINICAL TRIALS 1003 00:37:01,953 --> 00:37:04,388 IT CAN CONTRIBUTE TO A WIDENING 1004 00:37:04,455 --> 00:37:04,922 OF HEALTH INIQUITIES. 1005 00:37:04,989 --> 00:37:08,225 WE KNOW THAT ALL INDIVIDUALS DO 1006 00:37:08,292 --> 00:37:09,760 NOT EXPERIENCE DEC OR RESPOND TO 1007 00:37:09,827 --> 00:37:13,965 THERAPIES IN THE SAME WAY. 1008 00:37:14,031 --> 00:37:15,266 AND WHEN DISEASES AND MEDICAL 1009 00:37:15,333 --> 00:37:17,635 TREATMENTS ARE NOT STUDIED IN 1010 00:37:17,702 --> 00:37:18,970 DIRVERSE POPULATIONS, 1011 00:37:19,036 --> 00:37:19,870 RESEARCHERS AND SCIENTISTS MAY 1012 00:37:19,937 --> 00:37:22,139 NOT HAVE THE INFORMATION THEY 1013 00:37:22,206 --> 00:37:24,942 NEED TO UNDERSTAND HOW CERTAIN 1014 00:37:25,009 --> 00:37:25,710 GROUPS ARE AFFECTED. 1015 00:37:25,776 --> 00:37:27,378 AND THE DATA GAP CAN REALLY 1016 00:37:27,445 --> 00:37:28,546 IMPACT THE DEVELOPMENT OF 1017 00:37:28,613 --> 00:37:30,481 MEDICAL TREATMENTS AND MAY LEAD 1018 00:37:30,548 --> 00:37:33,551 TO DISEASES GOING UNDER 1019 00:37:33,618 --> 00:37:34,518 DIAGNOSED, UNTREATED, OR TREATED 1020 00:37:34,585 --> 00:37:36,120 WITH MEDICINES THAT MAY NOT WORK 1021 00:37:36,187 --> 00:37:38,856 AS WELL FOR CERTAIN PEOPLE 1022 00:37:38,923 --> 00:37:40,157 EMPLOY SO THEREFORE DIVERSE 1023 00:37:40,224 --> 00:37:42,893 PARTICIPATION IS NECESSARY FOR 1024 00:37:42,960 --> 00:37:45,129 THE APPROVAL OF NEW, SAFE, AND 1025 00:37:45,196 --> 00:37:47,865 EFFECTIVE THERAPIES FOR ALL 1026 00:37:47,932 --> 00:37:48,532 PATIENTS. 1027 00:37:48,599 --> 00:37:49,900 AND THIS IS PARTICULARLY 1028 00:37:49,967 --> 00:37:51,836 IMPORTANT IN LUPUS BECAUSE 1029 00:37:51,902 --> 00:37:53,371 SIGNIFICANT RACIAL AND ETHNIC 1030 00:37:53,437 --> 00:37:54,705 DISPARITIES EXIST IN LUPUS, WE 1031 00:37:54,772 --> 00:37:57,008 ALL KNOW THAT LUPUS 1032 00:37:57,074 --> 00:37:58,042 DISPROPORTIONATELY AFFECTS OUR 1033 00:37:58,109 --> 00:37:58,976 BLACK AND LATINO PATIENT WHO IS 1034 00:37:59,043 --> 00:38:01,812 HAVE BOTH THE GREATER MORBIDITY 1035 00:38:01,879 --> 00:38:04,448 AND GREATER MORTALITY FROM THE 1036 00:38:04,515 --> 00:38:07,685 DISEASE. 1037 00:38:07,752 --> 00:38:08,419 BLACK AFRICAN ANCESTRY IN 1038 00:38:08,486 --> 00:38:09,920 PARTICULAR IS ASSOCIATE WIDE A 1039 00:38:09,987 --> 00:38:11,656 HIGHER PREVALENCE OF LUPUS, 1040 00:38:11,722 --> 00:38:14,425 GREATER DEC SEVERE MITRALIT AND 1041 00:38:14,492 --> 00:38:15,493 INCREASED RISK OF CARDIOVASCULAR 1042 00:38:15,559 --> 00:38:17,962 EVENTS AS WELL AS MORE AND/OR 1043 00:38:18,029 --> 00:38:19,930 ORGAN DAMAGE AND MORTALITY RATES 1044 00:38:19,997 --> 00:38:21,132 COMPARED TO WHITE PAIBTS WITH 1045 00:38:21,198 --> 00:38:22,967 LUPUS AND WE ALSO KNOW THAT 1046 00:38:23,034 --> 00:38:24,602 BLACK PEOPLE WITH LUPUS HAVE 1047 00:38:24,669 --> 00:38:25,903 LOWER LEVELS OF SOCIAL SUPPORT 1048 00:38:25,970 --> 00:38:28,939 COMPARED TO WHITE PEOPLE WITH 1049 00:38:29,006 --> 00:38:30,207 LUPUS. 1050 00:38:30,274 --> 00:38:33,744 AND THE CHALLENGES AND 1051 00:38:33,811 --> 00:38:35,680 CONSEQUENCES OF 1052 00:38:35,746 --> 00:38:36,514 UNDERREPRESENTATION AND CLINICAL 1053 00:38:36,580 --> 00:38:39,717 TRIAL RECRUITMENT AND 1054 00:38:39,784 --> 00:38:50,194 PARTICIPATION ARE REALLY 1055 00:38:54,265 --> 00:38:58,169 EXEMPLIFIED BY BELIMUMAB, AND IT 1056 00:38:58,235 --> 00:38:59,904 WAS EFFICACIOUS AND THE NUMBER 1057 00:38:59,970 --> 00:39:02,273 OF PEOPLE IN THE TRIAL WAS SMALL 1058 00:39:02,339 --> 00:39:05,710 AND MOST GROUP ANALYSIS GAVE 1059 00:39:05,776 --> 00:39:07,011 RESULS REGARDING EFFICACY IN THE 1060 00:39:07,078 --> 00:39:10,548 BLACK POPULATION EMPLOY SO AS A 1061 00:39:10,614 --> 00:39:16,487 RESULT THE FDA ADD A CAUTIONARY 1062 00:39:16,554 --> 00:39:19,490 STATEMENT REGARDING BELIMUMAB IN 1063 00:39:19,557 --> 00:39:21,025 RELATING TO THE AFRICAN AMERICAN 1064 00:39:21,092 --> 00:39:22,259 ANCESTRY AND YOU CAN IMAGINE 1065 00:39:22,326 --> 00:39:24,795 THESE WARNINGS LED TO 1066 00:39:24,862 --> 00:39:28,099 SIGNIFICANT CONFUSION ABOUT 1067 00:39:28,165 --> 00:39:29,467 PRESCRIBING BELIMUMAB LIKELY 1068 00:39:29,533 --> 00:39:31,435 RESULTING IN DELAYED TREATMENT 1069 00:39:31,502 --> 00:39:33,404 FOR MANY PATIENTS WITH LUPUS WHO 1070 00:39:33,471 --> 00:39:34,905 WE KNOW INCUR THE GREATEST 1071 00:39:34,972 --> 00:39:35,539 DISEASE BURDEN. 1072 00:39:35,606 --> 00:39:37,608 AND THE FDA THEN MANDATED A POST 1073 00:39:37,675 --> 00:39:39,610 MARKETING STUDY TO ALLEVIATE THE 1074 00:39:39,677 --> 00:39:42,346 CONCERNS ABOUT THE SAFETY AND 1075 00:39:42,413 --> 00:39:43,981 EFFICACY OF BELLE IN BLACK 1076 00:39:44,048 --> 00:39:45,950 PATIENTS CALLED EMBRACE AND 1077 00:39:46,016 --> 00:39:47,251 EMBRACE RECRUITED ONLY PATIENT 1078 00:39:47,318 --> 00:39:49,153 WHO IS SELF-IDENTIFIED AS BEING 1079 00:39:49,220 --> 00:39:51,088 A BLACK RACE AND ALTHOUGH THE 1080 00:39:51,155 --> 00:39:53,390 STUDY DID NOT MEET THE PRIMARY 1081 00:39:53,457 --> 00:39:56,360 END POINT, IT DID PROVIDE ENOUGH 1082 00:39:56,427 --> 00:39:58,763 EVIDENCE OF THE EFFICACY OF 1083 00:39:58,829 --> 00:40:00,798 BELIMUMAB FOR THE FDA TO REMOVE 1084 00:40:00,865 --> 00:40:03,033 THE CAUTIONARY STATEMENT FROM 1085 00:40:03,100 --> 00:40:03,467 THE PRODUCT LABEL. 1086 00:40:03,534 --> 00:40:05,369 SO I THINK WE COULD SPEAK AT 1087 00:40:05,436 --> 00:40:08,172 LENGTH ABOUT THE LESSONS LEARNED 1088 00:40:08,239 --> 00:40:10,341 FROM THE STORY FOR THE SAKE OF 1089 00:40:10,407 --> 00:40:11,876 TIME, I WILL JUST COMMENT THAT 1090 00:40:11,942 --> 00:40:13,377 IF PARTICIPANTS AND RECRUITMENT 1091 00:40:13,444 --> 00:40:16,147 IN THESE INITIAL PHASE 2 AND 1092 00:40:16,213 --> 00:40:18,249 PHASE 3 RANDOMIZED CONTROL 1093 00:40:18,315 --> 00:40:20,785 TRIALS HAD ADEQUATELY REFLECTED 1094 00:40:20,851 --> 00:40:21,752 THE LUPUS POPULATION, THIS 1095 00:40:21,819 --> 00:40:23,020 EMBRACE STUDY MIGHT NOT BE 1096 00:40:23,087 --> 00:40:24,421 NECESSARY AND THESE DELAYS IN 1097 00:40:24,488 --> 00:40:28,759 TREATMENT LIKELY WOULD NOT HAVE 1098 00:40:28,826 --> 00:40:29,160 OCCURRED. 1099 00:40:29,226 --> 00:40:30,761 SO IN OUR LAST MINUTE, I WOULD 1100 00:40:30,828 --> 00:40:32,596 LIKE TO TAKE THE COMMUNITY TO 1101 00:40:32,663 --> 00:40:33,364 SPEAK DIRECTLY TO THE PATIENTS 1102 00:40:33,430 --> 00:40:35,566 THAT ARE HERE TODAY, COMMUNITY 1103 00:40:35,633 --> 00:40:36,367 LEADERS AND PROVIDERS LIKE 1104 00:40:36,433 --> 00:40:37,668 MYSELF IN THE COMMUNITY WHO MAY 1105 00:40:37,735 --> 00:40:39,537 OR MAY NOT BE INVOLVED IN 1106 00:40:39,603 --> 00:40:41,272 CLINICAL RESEARCH, YOU REALLY DO 1107 00:40:41,338 --> 00:40:42,573 HAVE THE POWER TO CONTRIBUTE TO 1108 00:40:42,640 --> 00:40:46,177 THE HEALTH OF YOUR COMMUNITY. 1109 00:40:46,243 --> 00:40:47,044 DIVERSITY AND CLINICAL TRIALS 1110 00:40:47,111 --> 00:40:50,781 NOT ONLY HELP TO FIGHT HEALTH 1111 00:40:50,848 --> 00:40:51,949 INEQUALITYYS BUT IT COULD LEAD 1112 00:40:52,016 --> 00:40:53,584 TO KNOWLEDGE ABOUT DISEASE ASKS 1113 00:40:53,651 --> 00:40:54,552 POTENTIAL TREATMENTS FOR ALL, 1114 00:40:54,618 --> 00:40:57,354 THAT'S WHY WHEN YOU TAKE PART IN 1115 00:40:57,421 --> 00:40:59,089 A CLINICAL TRIAL, YOU REALLY ARE 1116 00:40:59,156 --> 00:41:01,625 SUPPORTING YOUR FAMILY, YOUR 1117 00:41:01,692 --> 00:41:03,127 FRIENDS, YOUR ENTIRE COMMUNITY 1118 00:41:03,194 --> 00:41:05,729 AND YOUR PARTICIPATION PROVIDES 1119 00:41:05,796 --> 00:41:06,797 UNIQUE AND IMPORTANT INFORMATION 1120 00:41:06,864 --> 00:41:08,199 THAT CAN HELP RESEARCHERS AND 1121 00:41:08,265 --> 00:41:09,500 SCIENTISTS LIKE THOSE HERE AT 1122 00:41:09,567 --> 00:41:11,902 THE NIH TAKE STEPS TOWARDS 1123 00:41:11,969 --> 00:41:14,171 DEVELOPING A HEALTHIER WORLD. 1124 00:41:14,238 --> 00:41:18,509 SO WITH THAT I WILL SAY THANK 1125 00:41:18,576 --> 00:41:19,777 YOU VERY MUCH. 1126 00:41:19,844 --> 00:41:29,787 [ APPLAUSE ] 1127 00:41:29,854 --> 00:41:31,322 >> THANK YOU DR. LOCKWOOD. 1128 00:41:31,388 --> 00:41:34,658 NEXT WE HAVE COMING UP ELAINE 1129 00:41:34,725 --> 00:41:36,694 PONSIEO. 1130 00:41:36,760 --> 00:41:42,399 HE WILL INTERVIEWING 1131 00:41:42,466 --> 00:41:48,873 MRS. JENNIFER FAULK. 1132 00:41:48,939 --> 00:41:54,445 GIVE THEM A WARM WELCOME. 1133 00:41:54,511 --> 00:41:57,615 >> OKAY, GOOD MORNING EVERYONE. 1134 00:41:57,681 --> 00:41:59,550 GOOD MORNING MRS. FAULK. 1135 00:41:59,617 --> 00:42:00,584 FIRST THANK YOU SO MUCH FOR 1136 00:42:00,651 --> 00:42:01,986 TRAVELING ALL THIS WAY TO SHARE 1137 00:42:02,052 --> 00:42:02,686 YOUR STORY. 1138 00:42:02,753 --> 00:42:03,954 I KNOW WE'VE TALKED NUMEROUS 1139 00:42:04,021 --> 00:42:06,323 TIMES BUT I THINK THIS AUDIENCE 1140 00:42:06,390 --> 00:42:07,591 WILL BE VERY INTERESTED IN WHAT 1141 00:42:07,658 --> 00:42:09,793 YOU HAVE TO SHARE WITH US. 1142 00:42:09,860 --> 00:42:13,063 AND THEN ALSO, YOU ACTUALLY HAVE 1143 00:42:13,130 --> 00:42:14,331 PICTURES FOR US FOR THE AUDIENCE 1144 00:42:14,398 --> 00:42:17,201 TO SEE AS WELL SO YOU CAN TAKE 1145 00:42:17,268 --> 00:42:18,936 ACROSS YOUR JOURNEY WITH LUPUS 1146 00:42:19,003 --> 00:42:27,244 AND HOW IT HAS IMPACTED YOU. 1147 00:42:27,311 --> 00:42:28,712 SO FIRST MRS. FAULK, I WILL 1148 00:42:28,779 --> 00:42:30,114 START WITH THE INITIAL QUESTION, 1149 00:42:30,180 --> 00:42:32,082 COULD YOU PLEAS TELL US ABOUT 1150 00:42:32,149 --> 00:42:34,318 WHEN YOU'RE FIRST DIAGNOSED WITH 1151 00:42:34,385 --> 00:42:34,518 LUPUS? 1152 00:42:34,585 --> 00:42:35,586 >> ABSOLUTELY, SO I FESTER WANT 1153 00:42:35,653 --> 00:42:37,755 TO ALSO SAY THANK TO YOU 1154 00:42:37,821 --> 00:42:39,723 EVERYONE FOR BEING HERE, THIS IS 1155 00:42:39,790 --> 00:42:41,425 QUITE A SHOCK FOR SOMEONE WHO'S 1156 00:42:41,492 --> 00:42:43,694 40 YEARS IN THE PROGRAM 1157 00:42:43,761 --> 00:42:45,629 DR. BALOW, I'M PART OF YOUR CREW 1158 00:42:45,696 --> 00:42:47,031 AND I'M STILL STANDING. 1159 00:42:47,097 --> 00:42:49,366 SO THIS PICTURE IS ACTUALLY 1160 00:42:49,433 --> 00:42:53,203 AFTER I WAS DIAGNOSED WITH LUPUS 1161 00:42:53,270 --> 00:42:55,172 AT 16 IN 1981, I WENT TO THE 1162 00:42:55,239 --> 00:42:58,275 LIBRARY, THERE WAS NO GOOGLE 1163 00:42:58,342 --> 00:42:58,642 YET. 1164 00:42:58,709 --> 00:43:00,911 MY NIECE KIDS ME THAN THIS THAT 1165 00:43:00,978 --> 00:43:02,646 I'M OLDER THAN GOOGLE BUT THE 1166 00:43:02,713 --> 00:43:05,082 ONLY THING IT SAID WAS FATAL 1167 00:43:05,149 --> 00:43:06,050 BLOOD DISEASE, SO 16 YEAR-OLD 1168 00:43:06,116 --> 00:43:08,619 WALKING OUT OF THE LIBRARY AND 1169 00:43:08,686 --> 00:43:11,088 BY 18, I WAS--HAD THE RENAL 1170 00:43:11,155 --> 00:43:12,389 FUNCTION INVOLVEMENT, AND I WENT 1171 00:43:12,456 --> 00:43:15,159 TO A RENAL DOCTOR WHO 1172 00:43:15,225 --> 00:43:16,627 ESSENTIALLY TOLD ME THAT I WOULD 1173 00:43:16,694 --> 00:43:18,696 NOT LIVE TO SEE 20 AND THAT I 1174 00:43:18,762 --> 00:43:22,266 HAD TO DECIDE BETWEEN 2 DRUGS, 1175 00:43:22,333 --> 00:43:24,435 [INDISCERNIBLE] THAT I HAD TO 1176 00:43:24,501 --> 00:43:26,870 DECIDE WHICH I ALSO HAD VERY BIG 1177 00:43:26,937 --> 00:43:27,905 INTEREST IN CHEMISTRY AT THE 1178 00:43:27,972 --> 00:43:29,540 TIME AND I KNEW THAT CAN'T BE 1179 00:43:29,606 --> 00:43:29,873 RIGHT. 1180 00:43:29,940 --> 00:43:33,844 NOW CAN I DOCTOR ASK A PATE TO 1181 00:43:33,911 --> 00:43:34,578 CHOOSE. 1182 00:43:34,645 --> 00:43:36,080 WELL, WE ENDED UP HAVING 1183 00:43:36,146 --> 00:43:40,217 IRONICALLY MET A YOUNG LADY WHO 1184 00:43:40,284 --> 00:43:41,185 HAD WORK WIDE 1185 00:43:41,251 --> 00:43:41,785 DR. [INDISCERNIBLE] AND HAD A 1186 00:43:41,852 --> 00:43:43,620 PHONE NUMBER AND CALLED HIM AND 1187 00:43:43,687 --> 00:43:48,759 SO WE DREEF HERE THAT YEAR. 1188 00:43:48,826 --> 00:43:50,861 THIS ACTUALLY IN 1983, I HAD 1189 00:43:50,928 --> 00:43:52,963 JUST SIGNED ON AS A PATIENT, MY 1190 00:43:53,030 --> 00:43:54,365 KIDNEYS WERE BAD ENOUGH, GO 1191 00:43:54,431 --> 00:43:55,766 JENNIFER THAT I WAS ABLE GET IN 1192 00:43:55,833 --> 00:43:57,101 THE PROGRAM, SO THIS IS MY FIRST 1193 00:43:57,167 --> 00:43:59,803 DAY OF COLLEGE WHICH I WAS TOLD 1194 00:43:59,870 --> 00:44:02,239 WHY TO OR WHY WOULD I EVER WANT 1195 00:44:02,306 --> 00:44:03,741 TO CONSIDER GOING TO COLLEGE 1196 00:44:03,807 --> 00:44:05,042 BECAUSE I WASN'T GOING TO LIVE 1197 00:44:05,109 --> 00:44:07,344 TO BE 20 EMPLOY SO IT WAS QUITE 1198 00:44:07,411 --> 00:44:13,317 A GREAT DAY, THIS IS MY MOM AND 1199 00:44:13,384 --> 00:44:13,517 DAD. 1200 00:44:13,584 --> 00:44:19,690 SO THE NEXT PICTURE IS THE 1201 00:44:19,757 --> 00:44:25,095 DAMAGE AND WHAT HAPPENS WITH ... 1202 00:44:25,162 --> 00:44:25,562 SORRY. 1203 00:44:25,629 --> 00:44:27,131 >> IT'S OKAY. 1204 00:44:27,197 --> 00:44:30,734 >> I'M SURE--THANK YOU. 1205 00:44:30,801 --> 00:44:33,637 [ APPLAUSE ] 1206 00:44:33,704 --> 00:44:35,606 >> I ENCOURAGE YOU TO TAKE 1207 00:44:35,672 --> 00:44:36,907 PICTURES TO LOOK BACK BECAUSE 1208 00:44:36,974 --> 00:44:40,611 LOOKING BACK IS JUST AS 1209 00:44:40,677 --> 00:44:43,047 IMPORTANT AND IT WREAKS HAVOC, 1210 00:44:43,113 --> 00:44:44,114 THE DRUGS SOMETIMES ARE WORSE 1211 00:44:44,181 --> 00:44:46,650 THAN THE DISEASE, I LOST ALL MY 1212 00:44:46,717 --> 00:44:49,887 HAIR, I GAINED 60-POUNDS, I WAS 1213 00:44:49,953 --> 00:44:52,423 REALLY NOT DOING WELL AND BY 1214 00:44:52,489 --> 00:44:56,260 1988 I HAD COME BACK BECAUSE 1215 00:44:56,326 --> 00:44:57,761 WITH THE PROGRAM I PULLED 1216 00:44:57,828 --> 00:44:59,396 [INDISCERNIBLE] SO I WAS TAKING 1217 00:44:59,463 --> 00:45:00,931 THE [INDISCERNIBLE] BUT WITH THE 1218 00:45:00,998 --> 00:45:01,765 PREDNISONE, THIS IS WHAT 1219 00:45:01,832 --> 00:45:03,033 HAPPENED AND THEN I OF COURSE 1220 00:45:03,100 --> 00:45:05,869 LOST MY HAIR SHORTLY THEREAFTER. 1221 00:45:05,936 --> 00:45:08,472 BUT I DID MAKE IT THROUGH 1222 00:45:08,539 --> 00:45:09,940 COLLEGE, I DROPPED OUT 4 TIMES, 1223 00:45:10,007 --> 00:45:11,475 BACHELOR OF BUSINESS WITH A 1224 00:45:11,542 --> 00:45:13,010 MINOR IN CHEMISTRY WHICH I THINK 1225 00:45:13,077 --> 00:45:14,278 PROBABLY ANNOYED MY DOCTORS EVEN 1226 00:45:14,344 --> 00:45:16,914 MORE BECAUSE I ASK QUESTIONS 1227 00:45:16,980 --> 00:45:24,288 CONSTANTLY. 1228 00:45:24,354 --> 00:45:25,155 THANK YOU. 1229 00:45:25,222 --> 00:45:26,723 I DID WANT TO SAY WHEN I CAME 1230 00:45:26,790 --> 00:45:29,026 AND SIGNED ON, I HAD TO DECIDE 1231 00:45:29,093 --> 00:45:30,661 WHEN I WAS AN 18 YEAR-OLD TO 1232 00:45:30,727 --> 00:45:33,030 GIVE MY BODY TO SCIENCE WHILE I 1233 00:45:33,097 --> 00:45:34,498 WAS ALIVE. 1234 00:45:34,565 --> 00:45:38,802 I WAS WANDERING THE HALLS, AND 1235 00:45:38,869 --> 00:45:40,704 LISTENING TO A WALKMAN, AND YES, 1236 00:45:40,771 --> 00:45:43,607 YOU MAY NOT KNOW WHAT THAT WAS, 1237 00:45:43,674 --> 00:45:45,309 AND IT I FOUND A BIBLE VERSE 1238 00:45:45,375 --> 00:45:46,643 THAT SAYS THERE A'S POOL OF 1239 00:45:46,710 --> 00:45:48,145 WATER WHERE THE ANGELS GATHER 1240 00:45:48,212 --> 00:45:51,248 AND IT SAYS WHEN THE SICK PERSON 1241 00:45:51,315 --> 00:45:53,383 STIRS THE WATER, THE SICK PERSON 1242 00:45:53,450 --> 00:45:53,650 IS HEALED. 1243 00:45:53,717 --> 00:45:56,286 SO I HAD THE FAITH AND NIH 1244 00:45:56,353 --> 00:45:57,754 PROVIDED THE HOPE AND YOU DID 1245 00:45:57,821 --> 00:45:59,223 BECAUSE HERE I SIT TODAY. 1246 00:45:59,289 --> 00:46:00,891 SO WHEN I JOINED, IF YOU CAN GO 1247 00:46:00,958 --> 00:46:02,192 TO THE NEXT PICTURE, THIS WAS 1248 00:46:02,259 --> 00:46:04,862 WHEN I WAS AT MY WORST AND AGAIN 1249 00:46:04,928 --> 00:46:06,396 TAKE PICTURES AS HORRIBLE AS 1250 00:46:06,463 --> 00:46:08,031 THAT LOOKS AND AS HORRIBLE IS TO 1251 00:46:08,098 --> 00:46:09,933 LOOK BACK AT IT, IT'S REALLY 1252 00:46:10,000 --> 00:46:12,302 IMPORTANT TO REFLECT AND THIS 1253 00:46:12,369 --> 00:46:18,475 WAS THIS IS WHEN YOU SWITCHED ME 1254 00:46:18,542 --> 00:46:23,347 FROM THE SOLUMEDEROL TO CYTOXAN, 1255 00:46:23,413 --> 00:46:26,383 I LOST THIRD POUNDS WATER WEIGHT 1256 00:46:26,450 --> 00:46:29,019 AND MY KIDNEYS KICKED AND BY THE 1257 00:46:29,086 --> 00:46:30,587 FIFTH TREATMENT I WAS STABLE AND 1258 00:46:30,654 --> 00:46:34,591 I AM 53 NOW. 1259 00:46:34,658 --> 00:46:37,461 SO THIS WAS MY FIRST DOSE, 1260 00:46:37,528 --> 00:46:38,762 FRIENDS AND MY FAMILY MEMBERS TO 1261 00:46:38,829 --> 00:46:41,798 GET ME THROUGH THAT FIRST DOSE. 1262 00:46:41,865 --> 00:46:43,333 THIS WAS MY LAST TIME I DROPPED 1263 00:46:43,400 --> 00:46:44,801 OUT OF COLLEGE BUT THIS IS WHEN 1264 00:46:44,868 --> 00:46:46,136 I RETURNED AND DID ACTUALLY 1265 00:46:46,203 --> 00:46:47,638 FINISH, SO THIS WAS A GREAT, 1266 00:46:47,704 --> 00:46:49,640 AGAIN, THIS WAS ON THE 90S. 1267 00:46:49,706 --> 00:46:52,042 SO THERE WAS IN-PATIENT THEN, 1268 00:46:52,109 --> 00:46:54,811 TOO, SO THE NEXT-- 1269 00:46:54,878 --> 00:46:56,914 >> YEAH AND THEN MRS. FAULK WHEN 1270 00:46:56,980 --> 00:46:58,549 WE WERE SPEAKING AND THE YOU 1271 00:46:58,615 --> 00:47:00,551 KNOW THE STUDY YOU PARTICIPATED 1272 00:47:00,617 --> 00:47:02,519 IN OVER 30 YEARS AGO NOW. 1273 00:47:02,586 --> 00:47:03,086 >> FORTY. 1274 00:47:03,153 --> 00:47:04,588 >> FORTY YEARS AGO, NOW THIS IS 1275 00:47:04,655 --> 00:47:06,123 OUR STANDARD OF TREATMENT NOW WE 1276 00:47:06,190 --> 00:47:07,591 PROVIDE OUR PATIENTS FLOABALLY. 1277 00:47:07,658 --> 00:47:10,260 SO IT DOES PUT IT INTO 1278 00:47:10,327 --> 00:47:12,196 PERSPECTIVE WHAT RESEARCH CAN DO 1279 00:47:12,262 --> 00:47:13,797 AND HELP FUTURE PATIENTS. 1280 00:47:13,864 --> 00:47:15,866 SO AS A RESEARCHER, YOU KNOW I 1281 00:47:15,933 --> 00:47:17,734 THANK YOU AS A VOLUNTEER FOR 1282 00:47:17,801 --> 00:47:20,070 DOING THIS BECAUSE WITHOUT YOUR 1283 00:47:20,137 --> 00:47:21,205 PARTICIPATION THEN, MAYBE YOU 1284 00:47:21,271 --> 00:47:22,372 WOULDN'T HAVE THIS TREATMENT 1285 00:47:22,439 --> 00:47:24,942 TODAY, SO I DO THANK YOU EMPLOY. 1286 00:47:25,008 --> 00:47:26,109 >> THANK YOU NAND THEN WE'LL GO 1287 00:47:26,176 --> 00:47:30,414 TO THE NEXT PICTURE. 1288 00:47:30,480 --> 00:47:32,683 >> SO 1999 I DID GET MARRIED, 1289 00:47:32,749 --> 00:47:34,418 ANY OPPORTUNITY TO GET YOUR 1290 00:47:34,484 --> 00:47:35,419 WEDDING PICTURE IN SOMETHING, 1291 00:47:35,485 --> 00:47:37,421 BECAUSE YOU NEVER PULL THEM OUT 1292 00:47:37,487 --> 00:47:38,956 AGAIN, SO HERE'S MY WEDDING 1293 00:47:39,022 --> 00:47:40,023 PICTURE WITH MY HUSBAND GLEN, 1294 00:47:40,090 --> 00:47:41,692 HERE TODAY, IT'S LIKE A LIFE 1295 00:47:41,758 --> 00:47:43,060 THAT HE WASN'T AFTER THE 1296 00:47:43,126 --> 00:47:44,795 ACCIDENT WARE OF IN TERMS OF 1297 00:47:44,861 --> 00:47:46,763 LIKE, IT WAS THIS NIGHTMARE THAT 1298 00:47:46,830 --> 00:47:48,298 I CAME THROUGH AND THEN TO LOOK 1299 00:47:48,365 --> 00:47:49,433 BACK AT THIS NOW. 1300 00:47:49,499 --> 00:47:54,638 SO I THANK YOU GLEN FOR BEING 1301 00:47:54,705 --> 00:47:55,372 HERE. 1302 00:47:55,439 --> 00:47:56,273 I WAS REMISSION, 10 YEARS AT 1303 00:47:56,340 --> 00:47:57,941 THIS POINT AND THEN THIS IS MOST 1304 00:47:58,008 --> 00:47:59,142 RECENTLY BUT I WANTED TO YOU 1305 00:47:59,209 --> 00:48:01,345 KNOW TO THAT IF PARTICIPATING IN 1306 00:48:01,411 --> 00:48:03,080 NIH STUDY CAN SAVE A LIFE, IT'S 1307 00:48:03,146 --> 00:48:04,848 WORTH IT BECAUSE THAT 1 LIFE 1308 00:48:04,915 --> 00:48:15,425 MIGHT ACTUALLY BE YOUR OWN SO 1309 00:48:18,962 --> 00:48:19,296 THANK YOU. 1310 00:48:19,363 --> 00:48:21,164 >> I DO HAVE JUST A FEW 1311 00:48:21,231 --> 00:48:22,566 QUESTIONS, THANK YOU SO MUCH. 1312 00:48:22,633 --> 00:48:24,101 I DO THANK YOU FOR REACHING OUT 1313 00:48:24,167 --> 00:48:26,670 TO US BECAUSE WE STARTED TOWKING 1314 00:48:26,737 --> 00:48:27,738 BACK IN 2021 AND YOU'RE 1315 00:48:27,804 --> 00:48:28,705 INTERESTED IN TELLING YOUR STORY 1316 00:48:28,772 --> 00:48:31,908 AND I'M SO GLAD NOW THAT WE HAVE 1317 00:48:31,975 --> 00:48:34,678 PLATFORM FOR YOU TO BE ABLE TO 1318 00:48:34,745 --> 00:48:35,579 SHARE YOUR MESSAGE. 1319 00:48:35,646 --> 00:48:37,514 IS THERE ANYTHING ELSE THAT YOU 1320 00:48:37,581 --> 00:48:39,116 MIGHT WANT TO SHARE WITH 1321 00:48:39,182 --> 00:48:40,150 EVERYONE HERE. 1322 00:48:40,217 --> 00:48:41,785 >> YES, LET'S LOOK AT LONG-TERM 1323 00:48:41,852 --> 00:48:43,720 SIDE EVENS. 1324 00:48:43,787 --> 00:48:45,789 THAT'S PROBABLY OBVIOUSLY WITH 1325 00:48:45,856 --> 00:48:46,990 ALL THE DRUGS LOOKINGA THE IT 1326 00:48:47,057 --> 00:48:48,792 AND IF MYSELF AND I KNOW MANY OF 1327 00:48:48,859 --> 00:48:50,627 YOU PATIENTS SITTING IN THE ROOM 1328 00:48:50,694 --> 00:48:54,698 TODAY, THAT'S A CONCERN, IT'S A 1329 00:48:54,765 --> 00:48:55,565 CONCERN OBVIOUSLY BECAUSE BACK 1330 00:48:55,632 --> 00:48:57,401 40 YEARS AGO WHEN I TOOK THE 1331 00:48:57,467 --> 00:48:58,669 DRUG, THE ONLY INFORMATION THAT 1332 00:48:58,735 --> 00:49:01,405 EVEN LOOKING AT WHAT IT WAS AND 1333 00:49:01,471 --> 00:49:03,707 WHAT COULD POSSIBLY HAPPEN, IT 1334 00:49:03,774 --> 00:49:04,975 WAS A LIFE-DEATH CHOICE. 1335 00:49:05,042 --> 00:49:07,411 YOU HAD TO BUT THINK OF IT 1336 00:49:07,477 --> 00:49:09,413 FLOABALLY, WHAT THIS CAN DO FOR 1337 00:49:09,479 --> 00:49:11,114 GENERATIONS, FOR WHAT THIS CAN 1338 00:49:11,181 --> 00:49:13,917 CHANGE AND SO, THAT FOR ME, FOR 1339 00:49:13,984 --> 00:49:17,988 ENCOURAGING ALL OF YOU, IT 1340 00:49:18,055 --> 00:49:19,723 UPSETS ME ABOUT THE DISPARITIES 1341 00:49:19,790 --> 00:49:20,724 IN THE ETHNICITY OF PEOPLE 1342 00:49:20,791 --> 00:49:21,958 SIGNING UP AND WE NEED TO WORK 1343 00:49:22,025 --> 00:49:23,493 ON THAT, WE NEED TO DO BETTER ON 1344 00:49:23,560 --> 00:49:25,962 THAT, WE MUST DO BETTER ON THAT 1345 00:49:26,029 --> 00:49:28,031 BECAUSE THAT'S THE ONLY WAY WE 1346 00:49:28,098 --> 00:49:29,099 WILL REFLECT OUR COMMUNITY AS A 1347 00:49:29,166 --> 00:49:30,767 WHOLE SO I DO FEEL VERY STRONGLY 1348 00:49:30,834 --> 00:49:32,369 ABOUT THAT BUT AGAIN, I JUST 1349 00:49:32,436 --> 00:49:35,939 WOULD LIKE TO SAY THANK YOU TO 1350 00:49:36,006 --> 00:49:41,011 THE RESEARCHERS, TO YOU, ELAINE, 1351 00:49:41,078 --> 00:49:43,580 TO DR. BALOW, DR. GUPTA, THINK 1352 00:49:43,647 --> 00:49:44,915 ABOUT 40 YEARS AGO THAT I READ 1353 00:49:44,981 --> 00:49:46,883 AT 16 YEARS OLD, THAT WAS IT. 1354 00:49:46,950 --> 00:49:48,085 SO TODAY IT'S A NEW REALITY, 1355 00:49:48,151 --> 00:49:49,986 IT'S A NEW REALITY FOR YOUNG 1356 00:49:50,053 --> 00:49:50,921 PATIENTS GETTING DIAGNOSED AND 1357 00:49:50,987 --> 00:49:53,990 I'M GRATEFUL BUT I SEE 1358 00:49:54,057 --> 00:50:00,497 GENERATIONS BEING GRATEFUL TOO. 1359 00:50:00,564 --> 00:50:02,299 >> THANK YOU SO MUCH. 1360 00:50:02,366 --> 00:50:04,901 WITH THAT MRS. FAULK, WE JUST 1361 00:50:04,968 --> 00:50:08,305 WANT TO DO 1 OR 2 MINUTES OF ANY 1362 00:50:08,372 --> 00:50:09,673 AUDIENCE QUESTIONS. 1363 00:50:09,740 --> 00:50:10,841 YOU'RE WELCOME TO PLEASE GO TO 1364 00:50:10,907 --> 00:50:13,343 THE MICROPHONE AND IF YOU HAVE A 1365 00:50:13,410 --> 00:50:23,820 QUESTION FOR MRS. FAULK, PLEASE 1366 00:50:23,887 --> 00:50:28,825 FEEL FREE. 1367 00:50:28,892 --> 00:50:29,659 >> UH OH. 1368 00:50:29,726 --> 00:50:31,995 >> SO I'M YOU KNOW KIND OF 1369 00:50:32,062 --> 00:50:35,999 CURIOUS THAT YOU CAME TO NIH FOR 1370 00:50:36,066 --> 00:50:40,437 SO MANY YEARS AND COMING BACK 1371 00:50:40,504 --> 00:50:43,740 NOW AFTER 30, 40IERS HOW DO YOU 1372 00:50:43,807 --> 00:50:46,276 THINK THINGS HAVE CHANGED AND IN 1373 00:50:46,343 --> 00:50:47,677 TERMS OF RESEARCH, WE LIKE TO 1374 00:50:47,744 --> 00:50:48,945 HEAR TRUSTEES PATIENTS WHO 1375 00:50:49,012 --> 00:50:50,580 SHOULD BE ON OUR AGENDA SO 1376 00:50:50,647 --> 00:50:51,915 ANYTHING FROM THE PATIENTS 1377 00:50:51,982 --> 00:50:53,583 PERSPECTIVE, 1 ABOUT THE NIH HOW 1378 00:50:53,650 --> 00:50:55,886 THINGS HAVE CHANGED AND WHAT SHE 1379 00:50:55,952 --> 00:50:59,523 WE BE THINKING ABOUT IN 1380 00:50:59,589 --> 00:51:01,391 EMERGINGS OF NEXT IN RESEARCH. 1381 00:51:01,458 --> 00:51:06,530 NFIRST TO COME BACK, I HAVEN'T 1382 00:51:06,596 --> 00:51:08,598 BEEN BACK IN 24 YEARS I AM 1383 00:51:08,665 --> 00:51:10,600 HUMBLED BY ALL THE RESEARCH THAT 1384 00:51:10,667 --> 00:51:11,868 IS HAPPENING RIGHT NONAPOPTOTIC 1385 00:51:11,935 --> 00:51:12,969 AND SEEING THE SLIDES. 1386 00:51:13,036 --> 00:51:14,604 THAT WASN'T GOING ON, THAT 1387 00:51:14,671 --> 00:51:16,339 WASN'T GOING ON 40 YEARS AGO AT 1388 00:51:16,406 --> 00:51:17,140 ALL. 1389 00:51:17,207 --> 00:51:20,243 SO THAT WARMS MY HEART AND FILLS 1390 00:51:20,310 --> 00:51:23,313 ME, I THINK THE GENETICS AND 1391 00:51:23,380 --> 00:51:24,314 THAT'S HUGELY IMPORTANT, THE 1392 00:51:24,381 --> 00:51:25,449 GENOME STUDY AND KNOWING AND 1393 00:51:25,515 --> 00:51:28,652 MAPPING AND FIGURE IT OUT. 1394 00:51:28,718 --> 00:51:30,587 THE PROBLEM IS IT'S WHACK A 1395 00:51:30,654 --> 00:51:31,888 MOLE, EVERYTHING'S BLAME OFFICE 1396 00:51:31,955 --> 00:51:33,056 OF DIVERSITY SYMPTOMS OF LUPUS 1397 00:51:33,123 --> 00:51:33,824 AND EVERY SINGLE THING THAT 1398 00:51:33,890 --> 00:51:35,425 HAPPENED TO ME AND I'M SURE MANY 1399 00:51:35,492 --> 00:51:37,327 OF YOU PATIENTS CAN SPEAK TO 1400 00:51:37,394 --> 00:51:38,995 THIS, OH THAT'S LUPUS, THAT'S 1401 00:51:39,062 --> 00:51:40,297 THE LUPUS, OH COME ON PEOPLE. 1402 00:51:40,363 --> 00:51:41,364 AND THERE HAS TO BE A 1403 00:51:41,431 --> 00:51:42,199 QUARTERBACK, THAT'S THE OTHER 1404 00:51:42,265 --> 00:51:44,100 THING I WANTED TO MENTION. 1405 00:51:44,167 --> 00:51:45,702 YOU CAN'T FARM OUT A PERSON'S 1406 00:51:45,769 --> 00:51:47,304 BODY TO DIFFERENT PEOPLE AND NOT 1407 00:51:47,370 --> 00:51:49,372 HAVE 1 PERSON IN CHARGE. 1408 00:51:49,439 --> 00:51:53,343 SO PATIENTS PLEASE BE ACTIVE, 1409 00:51:53,410 --> 00:51:54,978 TAKE THE ACTION IN WHAT YOU'RE 1410 00:51:55,045 --> 00:51:56,279 DOING IN THAT RESPECT AND USING 1411 00:51:56,346 --> 00:51:57,814 THE PATIENT TO BE A PART OF THAT 1412 00:51:57,881 --> 00:52:00,584 ROLE SO THAT THEY HAVE CONTROL. 1413 00:52:00,650 --> 00:52:01,751 BECAUSE YOU HAVE NO CONTROL OVER 1414 00:52:01,818 --> 00:52:02,819 WHAT'S HAPPENING TO YOUR BODY, 1415 00:52:02,886 --> 00:52:05,222 IT'S LIKE THIS OUT OF THE WAY, 1416 00:52:05,288 --> 00:52:06,156 OUT OF CONTROL FREIGHT TRAIN 1417 00:52:06,223 --> 00:52:07,457 GOING DOWN THE TRACKS SO HAVING 1418 00:52:07,524 --> 00:52:08,658 THE PATIENT WORK ON THAT, I 1419 00:52:08,725 --> 00:52:10,293 WOULD LIKE TO SEE IT, TOO, 1420 00:52:10,360 --> 00:52:14,264 BECAUSE WITH BACK WHEN I FIRST 1421 00:52:14,331 --> 00:52:17,567 TOOK THAT CYTOXIN, THE 1422 00:52:17,634 --> 00:52:18,602 [INDISCERNIBLE] AND CYTOXIN, 1423 00:52:18,668 --> 00:52:20,470 SOMEONE HAD ME SPEAK TO AN ASIAN 1424 00:52:20,537 --> 00:52:21,872 DOCTOR WHO WORK WIDE ME ON 1425 00:52:21,938 --> 00:52:23,840 MEDITATION AND I WAS GETTING SO 1426 00:52:23,907 --> 00:52:25,842 SICK AND I WAS SO STRESSED OUT 1427 00:52:25,909 --> 00:52:27,477 ABOUT TAKING THIS AND THEY 1428 00:52:27,544 --> 00:52:29,246 HELPED ME WORK ON BREATHING, 1429 00:52:29,312 --> 00:52:31,014 DIDN'T WORK TOO WELL, EARLIER 1430 00:52:31,081 --> 00:52:33,283 BUT WORKED ON BREATHING, WORKED 1431 00:52:33,350 --> 00:52:37,120 ON VISUALIZATION, ON BUILDING MY 1432 00:52:37,187 --> 00:52:38,388 WHITE COUNT, BUILDING MY ARMY 1433 00:52:38,455 --> 00:52:40,257 EVERY TIME I CLOSE MY EYES SO I 1434 00:52:40,323 --> 00:52:42,425 WOULD LOVE TO SEE CROSS OVER, 1435 00:52:42,492 --> 00:52:44,895 GIVING PEASHTS WHOLISTIC AS WELL 1436 00:52:44,961 --> 00:52:51,601 AS THE SCIENCE BECAUSE--THANK 1437 00:52:51,668 --> 00:52:51,801 YOU. 1438 00:52:51,868 --> 00:52:52,502 [ APPLAUSE ] 1439 00:52:52,569 --> 00:52:53,570 TAKE CHARGE, UNDERSTAND WHAT 1440 00:52:53,637 --> 00:52:55,238 THESE TEFS ME BUT HELPING YOUR 1441 00:52:55,305 --> 00:52:57,407 PATIENTS TO UNDERSTAND IT, TALK 1442 00:52:57,474 --> 00:52:59,409 OVER THEIR HEADS, TALK TO THEM 1443 00:52:59,476 --> 00:53:00,043 TO UNDERSTAND WHAT'S HAPPENING 1444 00:53:00,110 --> 00:53:02,913 AS BEST YOU CAN, IT'S SO 1445 00:53:02,979 --> 00:53:04,281 UNBELIEVABLY COMPLICATED BUT 1446 00:53:04,347 --> 00:53:06,149 THAT WHOLE WHACK A MOLE GAME IS 1447 00:53:06,216 --> 00:53:07,684 SO DIFFICULT, IT'S SO DIFFICULT 1448 00:53:07,751 --> 00:53:08,818 BECAUSE EVERYTHING'S POPPING UP 1449 00:53:08,885 --> 00:53:11,655 DIFFERENTLY FOR EACH PERSON SO I 1450 00:53:11,721 --> 00:53:13,857 APPLAUD ALL OF YOU PATIENTS TOO, 1451 00:53:13,924 --> 00:53:15,058 BECAUSE GET ACTIVE, GET INVOLVED 1452 00:53:15,125 --> 00:53:16,560 BUT ALSO TRY TO LOOK AT NEW 1453 00:53:16,626 --> 00:53:17,394 THINGS THAT ARE HAPPENING THAT 1454 00:53:17,460 --> 00:53:18,962 CAN HELP YOU BECAUSE YOU HAVE TO 1455 00:53:19,029 --> 00:53:26,303 BE YOUR QUARTERBACK. 1456 00:53:26,369 --> 00:53:26,770 [ APPLAUSE ] 1457 00:53:26,836 --> 00:53:31,508 >> CAN I ASK YOU SOMETHING? 1458 00:53:31,575 --> 00:53:31,908 >> SURE. 1459 00:53:31,975 --> 00:53:34,244 >> LIKE YOU I'M A PATIENT. 1460 00:53:34,311 --> 00:53:35,879 ONE OF THE ISSUES THAT AFFECT ME 1461 00:53:35,946 --> 00:53:40,517 THE MOST IS THE HAIR LOSS BUT I 1462 00:53:40,584 --> 00:53:41,818 HAVE PERMANENT HAIR LOSS. 1463 00:53:41,885 --> 00:53:44,087 I SEE THAT WHEN YOU IT'S BEEN 1464 00:53:44,154 --> 00:53:47,624 DIFFERENT, CAN YOU EXPLAIN I 1465 00:53:47,691 --> 00:53:47,824 MEAN? 1466 00:53:47,891 --> 00:53:50,393 >> SO I THINK THIS IS ALSO PLACE 1467 00:53:50,460 --> 00:53:51,661 TWHO AND I'M SURE A DOCTOR CAN 1468 00:53:51,728 --> 00:53:53,296 SPEAK TO THIS AS WELL BUT I 1469 00:53:53,363 --> 00:53:54,998 THINK FOR EACH PERSON IT'S 1470 00:53:55,065 --> 00:53:55,265 DIFFERENT. 1471 00:53:55,332 --> 00:53:56,733 I DID LOSE ALL MY HAIR, IT I DID 1472 00:53:56,800 --> 00:53:59,202 LOSE IT, IT COMES BACK BABY FINE 1473 00:53:59,269 --> 00:54:03,239 AND THAT WAS SOMETHING THAT TOOK 1474 00:54:03,306 --> 00:54:05,875 TIME BUT I--THIS IS GOING TO 1475 00:54:05,942 --> 00:54:07,043 SOUND--TALK TO YOUR HAIR DRESSER 1476 00:54:07,110 --> 00:54:08,478 BUT WHAT CAN YOU DO, THE LESS 1477 00:54:08,545 --> 00:54:10,580 YOU TOUCH IT, THE LESS YOU DO 1478 00:54:10,647 --> 00:54:13,917 THINGS TO IT USING--WASHING IT, 1479 00:54:13,984 --> 00:54:15,685 USE MORE CONDITIONER, I THINK 1480 00:54:15,752 --> 00:54:16,820 THAT'S PROBABLY SIMPLISTIC SOME 1481 00:54:16,886 --> 00:54:18,655 OF YOU DON'T CARE ABOUT THAT BUT 1482 00:54:18,722 --> 00:54:20,090 FROM PATIENT TO PATIENT, I WOULD 1483 00:54:20,156 --> 00:54:22,092 LOVE TO TALK TO YOU AFTERWARDS 1484 00:54:22,158 --> 00:54:24,127 AS WELL EMPLOY THANK YOU. 1485 00:54:24,194 --> 00:54:29,833 THANK YOU AGAIN, SO MUCH 1486 00:54:29,899 --> 00:54:37,073 KD--SALLY A. 1487 00:54:37,140 --> 00:54:38,775 >> THANK YOU MRS. JENNIFER FAULK 1488 00:54:38,842 --> 00:54:39,643 FOR SHARING YOUR STORY. 1489 00:54:39,709 --> 00:54:41,745 NEXT WE HAVE COMING UP TO THE 1490 00:54:41,811 --> 00:54:43,313 STAGE DR. MARRIANA KAPLAN, SHE 1491 00:54:43,380 --> 00:54:46,116 IS THE CHIEF OF THE SYSTEMIC 1492 00:54:46,182 --> 00:54:48,151 AUTOIMMUNITY BRANCH AND SHE'S 1493 00:54:48,218 --> 00:54:49,586 THE DEPUTY SCIENTIFIC DIRECTOR 1494 00:54:49,653 --> 00:54:51,321 OF NETWORK IAMS, SHE WILL SPEAK 1495 00:54:51,388 --> 00:54:52,756 ON CARDIOVASCULAR DISEASE IN 1496 00:54:52,822 --> 00:54:54,858 LUPUS, AND RESEARCH DISCOVERIES 1497 00:54:54,924 --> 00:55:02,766 HERE AT NIAMS, IMIF HER A WARM 1498 00:55:02,832 --> 00:55:02,999 WELCOME. 1499 00:55:03,066 --> 00:55:05,535 NTHANK YOU VERY MUCH, GOOD 1500 00:55:05,602 --> 00:55:06,102 MORNING EVERYONE. 1501 00:55:06,169 --> 00:55:07,237 IT'S WONDER EVERL TO SEE 1502 00:55:07,303 --> 00:55:08,271 PATIENTS AND COLLEAGUES HERE AS 1503 00:55:08,338 --> 00:55:12,475 WE TALK ABOUT SOME OF THE 1504 00:55:12,542 --> 00:55:15,078 DISCOVERIES THAT HAVE BEEN MADE 1505 00:55:15,145 --> 00:55:19,349 AT NIAMS OVER MANY DECADES AND I 1506 00:55:19,416 --> 00:55:23,253 WANT TO FOCUS TODAY ON 1 1507 00:55:23,319 --> 00:55:25,155 COMPLICATION THAT IMPACTS LUPUS 1508 00:55:25,221 --> 00:55:26,556 SIGNIFICANTLY WHICH IS 1509 00:55:26,623 --> 00:55:27,691 CARDIOVASCULAR COMPLICATIONS BUT 1510 00:55:27,757 --> 00:55:29,092 ALSO TO EMPHASIZE THE IMPORTANCE 1511 00:55:29,159 --> 00:55:29,726 OF TRANSLATIONAL RESEARCH AND 1512 00:55:29,793 --> 00:55:31,127 HOW CAN WE LEARN AND BRING 1513 00:55:31,194 --> 00:55:32,395 THINGS THAT WE LEARN AT THE 1514 00:55:32,462 --> 00:55:35,565 BENCH TO THE BEDSIDE AND THEN 1515 00:55:35,632 --> 00:55:37,500 BACK FROM THE DISCOVERIES WE 1516 00:55:37,567 --> 00:55:41,304 MAKE THROUGH CLINICAL TRIALS TO 1517 00:55:41,371 --> 00:55:42,772 MORE BENCH AND REDIRECT SOME OF 1518 00:55:42,839 --> 00:55:46,209 THE BENCH RESEARCH AS WE DO 1519 00:55:46,276 --> 00:55:48,945 EVERY DAY, SO, JUST WANT TO 1520 00:55:49,012 --> 00:55:51,815 EMPHASIZE THAT ALTHOUGH WE HAVE 1521 00:55:51,881 --> 00:55:55,251 MADE AMAZING PROGRESS IN 1522 00:55:55,318 --> 00:55:57,287 DIAGNOSING AND TREATING LUPUS 1523 00:55:57,353 --> 00:55:58,788 THERE ARE TILL SOME AREAS THAT 1524 00:55:58,855 --> 00:56:00,023 ARE LAGGING IN UNDERSTANDING AND 1525 00:56:00,090 --> 00:56:01,858 PREVENTION AND TREATMENT AND 1 1526 00:56:01,925 --> 00:56:03,593 OF THEM IS CARDIOVASCULAR 1527 00:56:03,660 --> 00:56:07,430 DISEASE AS MANY OF YOU KNOW 1528 00:56:07,497 --> 00:56:09,065 VASCULAR EVENTS ARE IMPORTANT 1529 00:56:09,132 --> 00:56:11,935 CONTRIBUTORS TO MORBIDITY AND 1530 00:56:12,001 --> 00:56:13,670 MORTALITY IN LUPUS, IN YOUNG BEM 1531 00:56:13,737 --> 00:56:16,172 THERE IS TO GET A HEART ATTACK 1532 00:56:16,239 --> 00:56:17,841 OR STREAK IS ABOUT 50 FOLD 1533 00:56:17,907 --> 00:56:19,909 GREATER THAN A WOMAN WHO DOESN'T 1534 00:56:19,976 --> 00:56:21,978 HAVE LUPUS, AND CONTRARY TO WHAT 1535 00:56:22,045 --> 00:56:24,614 WAS CONSIDERED MANY DECADES AGO, 1536 00:56:24,681 --> 00:56:27,016 THIS IS DUE TO ACCELERATED 1537 00:56:27,083 --> 00:56:29,185 ABNORMAL GLUCOSE TOLERANCELER O 1538 00:56:29,252 --> 00:56:30,787 CLEROSEIS, WHAT PEOPLE MUCH 1539 00:56:30,854 --> 00:56:32,989 OLDER MAY GET AS OUR ARTERIES 1540 00:56:33,056 --> 00:56:36,760 AGE AND THIS HAPPENS IN LUPUS 1541 00:56:36,826 --> 00:56:38,027 MUCH EARLIER. 1542 00:56:38,094 --> 00:56:39,829 AND WE CANNOT EXPLAIN THESE BY 1543 00:56:39,896 --> 00:56:43,066 THE TYPICAL RISK FACTORS OF 1544 00:56:43,133 --> 00:56:44,667 CARDIOVASCULAR DISEASE, SMOKING, 1545 00:56:44,734 --> 00:56:45,602 DIABETES, NOT THAT THEY DON'T 1546 00:56:45,668 --> 00:56:47,237 PLAY A ROLE AND THEY SHOULDN'T 1547 00:56:47,303 --> 00:56:48,538 BE CONTROLLING LUPUS BUT THERE'S 1548 00:56:48,605 --> 00:56:52,742 SOMETHING MORE GOING ON IN LUPUS 1549 00:56:52,809 --> 00:56:54,477 PATIENTS AND I HAVE SPENT 1550 00:56:54,544 --> 00:56:55,411 SEVERAL DECADES OF MY RESEARCH 1551 00:56:55,478 --> 00:56:57,380 AT TRYING TO UNDERSTAND HOW THE 1552 00:56:57,447 --> 00:56:59,115 IMMUNE SYSTEM IN LUPUS PATIENTS 1553 00:56:59,182 --> 00:57:02,018 MAY CONTRIBUTE TO THE DEVELOPING 1554 00:57:02,085 --> 00:57:02,719 PREMATURE VASCULAR DEC. 1555 00:57:02,786 --> 00:57:05,088 AND THE DAMAGE TO THE BLOOD 1556 00:57:05,155 --> 00:57:06,289 VESSELS NOT ONLY IMPORTANT FOR 1557 00:57:06,356 --> 00:57:07,590 THE RACE FOR HEART ATTACKS CAN 1558 00:57:07,657 --> 00:57:08,525 STROKE BUT THE THING THAT 1559 00:57:08,591 --> 00:57:10,059 CONTRIBUTES TO SOME OF THE 1560 00:57:10,126 --> 00:57:11,661 COMPLICATIONS THAT AFFECT WOMEN 1561 00:57:11,728 --> 00:57:14,531 WITH LUPUS, THE KIDNEYS, THE 1562 00:57:14,597 --> 00:57:15,832 BRAIN, EVEN COMPLICATIONS DURING 1563 00:57:15,899 --> 00:57:17,600 PREGNANCY AND JUST TO MENTION 1564 00:57:17,667 --> 00:57:19,002 THIS IS--THIS IS HAPPENING ALSO 1565 00:57:19,068 --> 00:57:22,605 IN KIDS THAT DEVELOP LUPUS EARLY 1566 00:57:22,672 --> 00:57:22,772 ON. 1567 00:57:22,839 --> 00:57:24,007 SO THIS IS SOMETHING UNUSUAL 1568 00:57:24,073 --> 00:57:26,876 ABOUT THIS BECAUSE AS I 1569 00:57:26,943 --> 00:57:28,144 MENTIONED WOMEN TYPICALLY HAVE A 1570 00:57:28,211 --> 00:57:31,114 LOWER RISK FOR HEART DISEASE AND 1571 00:57:31,181 --> 00:57:33,683 DISEASE THAT PRIMARILY STRIKES 1572 00:57:33,750 --> 00:57:35,618 YOUNG WOMEN ALTHOUGH IT CAN 1573 00:57:35,685 --> 00:57:37,487 AFFECT AT ANY AGE AND MANY OF 1574 00:57:37,554 --> 00:57:39,889 THE REASONS BY WHICH WE EXPLAIN 1575 00:57:39,956 --> 00:57:41,524 CARDIO VASCULARY DEC OUTSIDE OF 1576 00:57:41,591 --> 00:57:43,560 LUPUS REALLY DO NOT APPLY IN 1577 00:57:43,626 --> 00:57:44,794 THIS DISEASE AND IN FACT SOME OF 1578 00:57:44,861 --> 00:57:51,034 THE TRIALS OF DRUGS OF EFFECTIVE 1579 00:57:51,100 --> 00:57:54,237 IN PREVENTING CVD, HAVE BEEN IN 1580 00:57:54,304 --> 00:57:55,905 LUPUS SO THERE'S A BIG NEED TO 1581 00:57:55,972 --> 00:57:57,073 FURTHER LANE WHAT'S GOING ON AND 1582 00:57:57,140 --> 00:57:59,242 COME UP WITH DRUGS THAT CAN 1583 00:57:59,309 --> 00:58:02,111 PREVENT AND DO EARLY TREATMENT 1584 00:58:02,178 --> 00:58:04,714 OF THIS COMPLICATION. 1585 00:58:04,781 --> 00:58:08,384 AND SO, ABOUT OVER 10 YEARS AGO, 1586 00:58:08,451 --> 00:58:11,321 SHORTLY AFTER I JOINED NIAMS, WE 1587 00:58:11,387 --> 00:58:14,090 ESTABLISHED WITHIN THE NATURAL 1588 00:58:14,157 --> 00:58:15,592 HISTORY, LUPUS PROTOCOL, ARDIO 1589 00:58:15,658 --> 00:58:18,094 VASCULAR NATURAL HISTORY 1590 00:58:18,161 --> 00:58:20,263 PROTOCOL, THAT HAS BEEN 1591 00:58:20,330 --> 00:58:24,200 INVALUABLE IN TRYING TO FURTHER 1592 00:58:24,267 --> 00:58:26,069 UNDERSTAND WHY WOMEN OR PATIENTS 1593 00:58:26,135 --> 00:58:26,903 WITH LUPUS DEVELOP 1594 00:58:26,970 --> 00:58:27,704 CARDIOVASCULAR DOZE AND ALSO 1595 00:58:27,770 --> 00:58:30,039 START TO TRY TO IDENTIFY DRUGS 1596 00:58:30,106 --> 00:58:33,042 THAT MAY HELP US PREVENT OR 1597 00:58:33,109 --> 00:58:35,645 TARGET THIS COMPLICATION. 1598 00:58:35,712 --> 00:58:37,480 AND JUST BROADLY SPEAKING, WE 1599 00:58:37,547 --> 00:58:39,048 ARE BRINGING THE PEASHTS TO THE 1600 00:58:39,115 --> 00:58:40,583 NIH CLINICAL CENTER ASK WE'RE 1601 00:58:40,650 --> 00:58:42,318 DOING A VERY COMPREHENSIVE 1602 00:58:42,385 --> 00:58:43,853 ASSESSMENT OF WHAT'S HAPPENING 1603 00:58:43,920 --> 00:58:46,723 TO THE BLOOD VESSELS SO WE CAN 1604 00:58:46,789 --> 00:58:48,658 IDENTIFY EARLY ON BEFORE END 1605 00:58:48,725 --> 00:58:51,628 ORGAN DAMAGE OCCURS HOW THE 1606 00:58:51,694 --> 00:58:53,062 ARTERIES MAY BE SUFFERING, WHY 1607 00:58:53,129 --> 00:58:54,731 IS THIS HAPPENING, CAN WE 1608 00:58:54,797 --> 00:58:56,499 IDENTIFY BY O MARKERS THAT WILL 1609 00:58:56,566 --> 00:58:58,301 ALLOW US TO DETECT THOSE 1610 00:58:58,368 --> 00:58:59,702 PATIENTS AT HIGHER RISK TO 1611 00:58:59,769 --> 00:59:01,671 DEVELOP CARDIO VASC LOOR DISEASE 1612 00:59:01,738 --> 00:59:04,040 AND ALSO TO START TESTING SOME 1613 00:59:04,107 --> 00:59:06,009 DRUGS THAT WE THINK MAY BE 1614 00:59:06,075 --> 00:59:08,111 IMPORTANT OR PLAY AN IMPORTANT 1615 00:59:08,177 --> 00:59:08,811 ROLE IN PREVENTING CARDIO VASC 1616 00:59:08,878 --> 00:59:10,580 LOOR DISEASE AND SOME OF THESE 1617 00:59:10,647 --> 00:59:12,448 DRUGS ACTUALLY WE HAVE 1618 00:59:12,515 --> 00:59:13,650 REPURPOSED, THEY HAVE BEEN 1619 00:59:13,716 --> 00:59:16,286 APPROVED FOR OTHER CONDITIONS 1620 00:59:16,352 --> 00:59:17,020 BUT WE THOUGHT BASED ON OUR 1621 00:59:17,086 --> 00:59:17,987 RESEARCH AND THE RESEARCH OF 1622 00:59:18,054 --> 00:59:22,392 OTHERS IT MAY BE USEFUL TO 1623 00:59:22,458 --> 00:59:24,360 PREVENT BLOOD CELL DAMAGE IN 1624 00:59:24,427 --> 00:59:25,762 PATIENTS WITH LUPUS, SOME DRUGS 1625 00:59:25,828 --> 00:59:28,631 ARE APPROVE INDEED LUPUS, USED 1626 00:59:28,698 --> 00:59:30,433 IN LUPUS BUT THEY HAVEN'T BEEN 1627 00:59:30,500 --> 00:59:31,134 STUDIED FOR CARDIOVASCULAR 1628 00:59:31,200 --> 00:59:33,436 DISEASE AND WE ARE HOPING ALSO 1629 00:59:33,503 --> 00:59:35,538 TO IN THE BEST CASE SCENARIO TO 1630 00:59:35,605 --> 00:59:37,240 USE DRUGS THAT WON'T SUPPRESS 1631 00:59:37,307 --> 00:59:38,541 THE IMMUNE SYSTEM OF LUPUS 1632 00:59:38,608 --> 00:59:40,944 PATIENTS BUT MAY HAVE AN EFFECT 1633 00:59:41,010 --> 00:59:43,146 IN MODULATING HOW THEIR IMMUNE 1634 00:59:43,212 --> 00:59:44,514 SYSTEM IS AFFECTING THE BLOOD 1635 00:59:44,580 --> 00:59:45,748 VESSEL SO IT'S STILL EARLY BUT 1636 00:59:45,815 --> 00:59:46,816 WE ARE MAKING PROGRESS AND I 1637 00:59:46,883 --> 00:59:50,586 WOULD LIKE TO EMPHASIZE JUST A 1638 00:59:50,653 --> 00:59:51,888 COUPLE OF TRIALS WE HAVE 1639 00:59:51,955 --> 00:59:53,589 FINISHED A COUPLE THAT ARE 1640 00:59:53,656 --> 00:59:57,994 ONGOING OR MAYBE ABOUT TO START 1641 00:59:58,061 --> 00:59:59,395 AND WHAT I CAN SAY IS ALL OF 1642 00:59:59,462 --> 01:00:00,363 THIS CAME FROM RESEARCH THAT WE 1643 01:00:00,430 --> 01:00:03,666 DID IN THE LAB AND OBSERVES WE 1644 01:00:03,733 --> 01:00:05,101 DID THAT LED HYPOTHESIZE THAT 1645 01:00:05,168 --> 01:00:07,770 THIS MAY BE A WAY TO GO. 1646 01:00:07,837 --> 01:00:09,973 SO 1 OF THEM IS A DRUG THAT IS 1647 01:00:10,039 --> 01:00:14,277 ACTUALLY USED TO TREAT TYPE 2 1648 01:00:14,344 --> 01:00:15,545 DIABETES, [INDISCERNIBLE] 1649 01:00:15,611 --> 01:00:17,347 AGONIST AND THEY HAVE BEEN 1650 01:00:17,413 --> 01:00:21,451 PROPOSED TO HAVE PROTECTION OF 1651 01:00:21,517 --> 01:00:24,053 THE CARDIOVASCULAR SYSTEM JUST 1652 01:00:24,120 --> 01:00:25,922 BEYOND CONTROLLING GLUCOSE THIS 1653 01:00:25,989 --> 01:00:27,223 DIABETICS AND THEY HAVE BEEN 1654 01:00:27,290 --> 01:00:29,559 TESTED IN OTHER CONDITIONS SO WE 1655 01:00:29,625 --> 01:00:31,060 COMPLETED A TRIAL SEVERAL YEARS 1656 01:00:31,127 --> 01:00:33,696 AGO TO TEST WHETHER 1 OF THESE 1657 01:00:33,763 --> 01:00:35,765 DRUGS WOULD IMPROVE FUNCTION IN 1658 01:00:35,832 --> 01:00:37,533 PATIENTS WITH LUPUS HERE AT THE 1659 01:00:37,600 --> 01:00:39,268 NIH CLINICAL CENTER AND I'M 1660 01:00:39,335 --> 01:00:41,838 SORRY TO SHOW GRAPHS BUT IN A 1661 01:00:41,904 --> 01:00:43,139 SHORT PERIOD OF TIME, WHEN WE 1662 01:00:43,206 --> 01:00:45,341 TREAT THESE PATIENTS WITH THE 1663 01:00:45,408 --> 01:00:46,843 DRUG [INDISCERNIBLE] COMPARED TO 1664 01:00:46,909 --> 01:00:48,011 PLACEBO WE SAW VERY STRIKING 1665 01:00:48,077 --> 01:00:49,345 EFFECT -S WHEN THE PATIENTS WERE 1666 01:00:49,412 --> 01:00:50,613 ON THE DRUG THAT WERE NOT 1667 01:00:50,680 --> 01:00:52,181 PRESENT WHEN THEY WERE ON THE 1668 01:00:52,248 --> 01:00:55,018 PLACEBO AND THIS INCLUDED 1669 01:00:55,084 --> 01:00:56,285 IMPROVING HOW THEIR BLOOD 1670 01:00:56,352 --> 01:00:57,687 VESSELS FUNCTION WHICH IS VERY 1671 01:00:57,754 --> 01:00:58,855 IMPORTANT IN PREDICKING WHETHER 1672 01:00:58,921 --> 01:01:00,757 A PATIENT MAY DEVELOP CARDIO 1673 01:01:00,823 --> 01:01:01,724 VASC LOOR DISEASE BUT ALSO AT 1674 01:01:01,791 --> 01:01:06,095 THE LEVEL OF THINGS THAT MAY GO, 1675 01:01:06,162 --> 01:01:07,730 MAY BE ABNORMAL IN LUPUS 1676 01:01:07,797 --> 01:01:09,799 PATIENTS THAT MAY DEVELOP 1677 01:01:09,866 --> 01:01:11,868 CARDIOVASCULAR DISEASE SUCH AS 1678 01:01:11,934 --> 01:01:13,136 HAVING ABNORMAL LIPIDS WE KNOW 1679 01:01:13,202 --> 01:01:15,038 IS A RISK FACTOR IN MANY DISEE E 1680 01:01:15,104 --> 01:01:17,473 DISEASES, WE FOUND A VERY 1681 01:01:17,540 --> 01:01:18,541 TRIKING IMPROVEMENT FROM JUST 1682 01:01:18,608 --> 01:01:20,610 THESE DRUGS, SO JUST IN DRUGS 1683 01:01:20,676 --> 01:01:22,011 THAT TREAT INSULIN RESISTANCE 1684 01:01:22,078 --> 01:01:24,680 MAY EFFECTS IN PEOPLE WITH 1685 01:01:24,747 --> 01:01:25,348 INFLAMMATION, WITH INFLAMMATORY 1686 01:01:25,415 --> 01:01:27,116 DISEASE SUCH AS LUPUS AND WE'RE 1687 01:01:27,183 --> 01:01:30,753 HOPING TO EXPAND SIMILAR STUDIES 1688 01:01:30,820 --> 01:01:31,220 IN THE FUTURE. 1689 01:01:31,287 --> 01:01:33,189 MY LAB HAS BEEN VERY INTERESTING 1690 01:01:33,256 --> 01:01:35,024 IN UNDERSTANDING HOW CERTAIN 1691 01:01:35,091 --> 01:01:36,225 COMPONENTS OF THE IMMUNE SYSTEM, 1692 01:01:36,292 --> 01:01:38,194 THE INNATE WHAT WE CALL THE 1693 01:01:38,261 --> 01:01:41,197 INNATE IMMUNE SYSTEM, MAY 1694 01:01:41,264 --> 01:01:45,368 CONTRIBUTE TO PREMATURE CARDIO 1695 01:01:45,435 --> 01:01:46,335 CARDIOVASCULAR DISEASE IN LUPUS 1696 01:01:46,402 --> 01:01:46,903 IN GENERAL. 1697 01:01:46,969 --> 01:01:48,404 SO WHAT WE HAVE CONE OVER THE 1698 01:01:48,471 --> 01:01:50,873 YEARS IS WE HAVE HYPOTHESIZED 1699 01:01:50,940 --> 01:01:52,708 THAT THESE COMPONENTS OF THE 1700 01:01:52,775 --> 01:01:54,010 INNATE IMMUNE SYSTEM, ARE 1701 01:01:54,077 --> 01:01:54,844 DRIVING CARDIO VASC LOOR 1702 01:01:54,911 --> 01:01:57,780 DISEASE, SO SOME OF THE 1703 01:01:57,847 --> 01:01:58,714 COMPONENTS WE THINK ARE 1704 01:01:58,781 --> 01:02:01,484 IMPORTANT CAN NOW BE TARGETED 1705 01:02:01,551 --> 01:02:03,252 THROUGH DRUGS THAT WERE RECENTLY 1706 01:02:03,319 --> 01:02:05,455 APPROVED EITHER IN LUPUS OR IN 1707 01:02:05,521 --> 01:02:06,389 OTHER AUTOIMMUNE DECS AND I JUST 1708 01:02:06,456 --> 01:02:09,926 WANT TO SHOW YOU THAT 1 OF THEM 1709 01:02:09,992 --> 01:02:11,761 WHICH WAS THE JACK INHIBITORS 1710 01:02:11,828 --> 01:02:13,296 THAT THERE HAVE BEEN A FEW 1711 01:02:13,362 --> 01:02:14,730 CLINICAL TRIALS IN LUPUS 1712 01:02:14,797 --> 01:02:15,998 SUGGESTING THIS DRUG MAY BE 1713 01:02:16,065 --> 01:02:18,101 USEFUL EVEN IF THEY HAVEN'T BEEN 1714 01:02:18,167 --> 01:02:19,836 APROWF PROVED FOR LUPUS YET BUT 1715 01:02:19,902 --> 01:02:30,113 WE HAVE ALSO TESTED THESE DRUGS 1716 01:02:30,179 --> 01:02:32,849 TOFACITINIB, AND FOUND IT 1717 01:02:32,915 --> 01:02:34,684 IMPROVED FUNCTIONS IN PATIENTS 1718 01:02:34,750 --> 01:02:36,652 AND SOME PARAMETERS THAT MIGHT 1719 01:02:36,719 --> 01:02:38,054 EXPOSE PATIENTS TO 1720 01:02:38,121 --> 01:02:38,888 CARDIOVASCULAR DISEASE EMPLOY SO 1721 01:02:38,955 --> 01:02:39,856 NOW WE'RE MOVING FORWARD WITH 1722 01:02:39,922 --> 01:02:42,658 ANOTHER DRUG AND THE STUDY IS 1723 01:02:42,725 --> 01:02:46,129 ABOUT TO START, THE TOFACITINIB 1724 01:02:46,195 --> 01:02:48,264 TRIAL AND WE'RE HOPING TO DO 1725 01:02:48,331 --> 01:02:49,799 INHIBITION OF A COUPLE PATHWAYS 1726 01:02:49,866 --> 01:02:51,200 THAT ARE NORMALLY IN LUPUS AND 1727 01:02:51,267 --> 01:02:53,002 AS 1 OF THE READ OUTS WE WILL 1728 01:02:53,069 --> 01:02:54,837 LOOK AT THE VASCULAR DISEASE OF 1729 01:02:54,904 --> 01:02:55,505 THIS PATIENT. 1730 01:02:55,571 --> 01:03:00,910 AND THE OTHER DRUG THAT WE ARE 1731 01:03:00,977 --> 01:03:01,811 ALREADY ONGOING CLINICAL TRIAL 1732 01:03:01,878 --> 01:03:03,713 BASED ON PREVIOUS STUDIES WE DID 1733 01:03:03,779 --> 01:03:05,982 IS WHAT HAPPENS WHEN WE BLOCK 1734 01:03:06,048 --> 01:03:07,617 THIS COMPOUND OF TYPE 1 1735 01:03:07,683 --> 01:03:09,018 INTERFERONS WHICH WE THINK ARE 1736 01:03:09,085 --> 01:03:10,520 VERY IMPORTANT IN PROMOTING 1737 01:03:10,586 --> 01:03:13,389 LUPUS BUT WE HAVE ALSO 1738 01:03:13,456 --> 01:03:14,690 HYPOTHESIZED THEY PLAY A ROLE IN 1739 01:03:14,757 --> 01:03:15,992 CARDIO VASC LOOR DISEASE, AND 1740 01:03:16,058 --> 01:03:18,661 WHEN WE HAVE SEEN STUDIES THAT 1741 01:03:18,728 --> 01:03:20,796 BLOCK THIS DRUG, WE SEE SIGNALS 1742 01:03:20,863 --> 01:03:22,865 APPROXIMATE AND WE MAY BE ABLE 1743 01:03:22,932 --> 01:03:23,799 TO IMPROVE VASCULAR FUNCTION AND 1744 01:03:23,866 --> 01:03:24,867 DEC IN THESE PATIENTS. 1745 01:03:24,934 --> 01:03:26,269 SO YOU WILL HEAR MORE ABOUT THIS 1746 01:03:26,335 --> 01:03:27,003 STUDY FROM MICHAEL DAVIS ABOUT 1747 01:03:27,069 --> 01:03:31,207 YOU THIS IS A STUDY THAT I AM 1748 01:03:31,274 --> 01:03:33,476 VERY HAPPY TO HAVE EMBARKED IN 1749 01:03:33,543 --> 01:03:35,645 BECAUSE IT REFLEBS MANY YEARS OF 1750 01:03:35,711 --> 01:03:37,013 RESEARCH AND TESTING THE 1751 01:03:37,079 --> 01:03:38,981 HYPOTHESIS WHETHER IF WE BLOCK 1752 01:03:39,048 --> 01:03:40,850 THESE MOLECULES WE WILL BE ABLE 1753 01:03:40,917 --> 01:03:43,619 TO PREVENT OR MITIGATE 1754 01:03:43,686 --> 01:03:45,922 CARDIOVASCULAR DISEASE 1755 01:03:45,988 --> 01:03:46,222 DEVELOPMENT. 1756 01:03:46,289 --> 01:03:47,390 AND FINALLY, I TOLD YOU ABOUT 1757 01:03:47,456 --> 01:03:50,026 ARE THERE WAYS WE ARE MAY BE 1758 01:03:50,092 --> 01:03:52,094 ABLE TO MODULATE CARDIOVASCULAR 1759 01:03:52,161 --> 01:03:53,162 DISEASE WITHOUT CAUSING 1760 01:03:53,229 --> 01:03:54,530 SIGNIFICANT SUPPRESSION OF THE 1761 01:03:54,597 --> 01:03:56,165 IMMUNE SYSTEM AND ALSO TO 1762 01:03:56,232 --> 01:03:56,899 EMPHASIZE THE COLLABORATIVE 1763 01:03:56,966 --> 01:03:59,368 NATURE OF OUR WORK, THIS IS 1764 01:03:59,435 --> 01:04:01,704 ACTUALLY A CLINICAL TRIAL THAT 1765 01:04:01,771 --> 01:04:04,774 IS GOING TO BE STARTED BY NHLBI, 1766 01:04:04,840 --> 01:04:06,242 BY DR. MICHAEL [INDISCERNIBLE] 1767 01:04:06,309 --> 01:04:08,578 AN INVESTIGATOR AT NHLBI IN 1768 01:04:08,644 --> 01:04:11,080 COLLABORATION WITH THE LCTU WITH 1769 01:04:11,147 --> 01:04:12,582 US AND THIS WILL TEST ACTUALLY 1770 01:04:12,648 --> 01:04:15,117 IF WE IMPROVE THE METABOLISM OF 1771 01:04:15,184 --> 01:04:21,557 IMMUNE CELLS IN LUPUS THROUGH 1772 01:04:21,624 --> 01:04:22,258 SUPPLEMENT CALLED 1773 01:04:22,325 --> 01:04:24,994 [INDISCERNIBLE], IF NOT ONLY IT 1774 01:04:25,061 --> 01:04:26,829 WILL IMPROVE THE IMMUNE 1775 01:04:26,896 --> 01:04:28,931 FUNCTIONS OF THESE PATIENTS OR 1776 01:04:28,998 --> 01:04:29,732 HOW DISREGULATED THE IMMUNE 1777 01:04:29,799 --> 01:04:31,234 SYSTEM BUT ALSO ARE WE GOING TO 1778 01:04:31,300 --> 01:04:33,869 HAVE AN IMPACT ON THE 1779 01:04:33,936 --> 01:04:34,604 CARDIOVASCULAR DISEASE. 1780 01:04:34,670 --> 01:04:35,938 SO THESE ARE HIGHLIGHTS I WANT 1781 01:04:36,005 --> 01:04:38,241 TO EMPHASIZE BECAUSE WE'RE 1782 01:04:38,307 --> 01:04:38,841 MAKING SIGNATURES NEFF CANT 1783 01:04:38,908 --> 01:04:40,009 PROGRESS AND ALTHOUGH IT WILL 1784 01:04:40,076 --> 01:04:41,410 TAKE TIME TO DEFINE WHICH DRUG 1785 01:04:41,477 --> 01:04:43,613 MAY BE THE BEST FOR CARDIO VASC 1786 01:04:43,679 --> 01:04:44,647 LOOR DISEASE PREVENTION AND WE 1787 01:04:44,714 --> 01:04:47,049 MAY NEED MORE THAN 1 SO I THINK 1788 01:04:47,116 --> 01:04:48,684 THE LAST IMMENSE PROGRESS IN 1789 01:04:48,751 --> 01:04:49,685 BETTER BEDDING THIS IMPORTANT 1790 01:04:49,752 --> 01:04:51,821 COMPLICATION AND I JUST WANT TO 1791 01:04:51,887 --> 01:04:54,390 THANK ALL THE SUPPORT FROM NIAMS 1792 01:04:54,457 --> 01:04:59,262 AND THE CLINICAL PROGRAM FROM 1793 01:04:59,328 --> 01:04:59,895 DR. GOLGBERG AND EVERYONE WHO 1794 01:04:59,962 --> 01:05:01,163 MADE THIS POSSIBLE AND THE 1795 01:05:01,230 --> 01:05:03,132 PEASHTS WITH WHOM THESE HAVE 1796 01:05:03,199 --> 01:05:04,166 BEEN--YOU ARE THE 1S THAT 1797 01:05:04,233 --> 01:05:05,701 INSPIRE US AND WE'RE HOPING TO 1798 01:05:05,768 --> 01:05:07,203 MAKE IN CONTRIBUTIONS IN THE 1799 01:05:07,270 --> 01:05:09,138 NEXT FEW YEARS TO BETTER 1800 01:05:09,205 --> 01:05:11,340 UNDERSTAND THIS AND OTHER 1801 01:05:11,407 --> 01:05:12,141 COMPLICATIONS IN THE DEC. 1802 01:05:12,208 --> 01:05:19,448 THANK YOU VERY MUCH. 1803 01:05:19,515 --> 01:05:21,050 >> THANK YOU DR. KAPLAN. 1804 01:05:21,117 --> 01:05:23,286 NEXT I WOULD LIKE TO INVITE BACK 1805 01:05:23,352 --> 01:05:31,494 TO THE STAGE PLSES JENNIFER 1806 01:05:31,560 --> 01:05:37,033 FAULK, DR. HASNI, AND 1807 01:05:37,099 --> 01:05:46,742 DR. CRISWELL, AND DR. BALLOW, WE 1808 01:05:46,809 --> 01:05:48,878 CAUGHT HIM JUST IN TIME. 1809 01:05:48,944 --> 01:05:50,846 >> WE HAVE A QUICK PRESENTATION 1810 01:05:50,913 --> 01:05:54,083 THIS IS FOR DR. BALOW FOR ALL 1811 01:05:54,150 --> 01:06:04,527 HIS WORK HE HAS DONE. 1812 01:06:04,994 --> 01:06:15,137 [ APPLAUSE ] 1813 01:06:27,516 --> 01:06:32,822 >> OUR NEXT SPEAKER IS DR. LAURA 1814 01:06:32,888 --> 01:06:33,289 LEWANDOWSKI. 1815 01:06:33,356 --> 01:06:35,491 SHE IS THE CLINICAL INVESTIGATOR 1816 01:06:35,558 --> 01:06:36,092 AT NIAMS. 1817 01:06:36,158 --> 01:06:37,960 HER PRESENTATION WILL BE ON 1818 01:06:38,027 --> 01:06:39,662 YEENS AND LUPUS, UNDERSTANDING 1819 01:06:39,729 --> 01:06:41,697 THE GENETICS OF LUPUS IN GLOBAL 1820 01:06:41,764 --> 01:06:42,031 POPULATIONS. 1821 01:06:42,098 --> 01:06:48,804 GIVE HER A WARM WELCOME. 1822 01:06:48,871 --> 01:06:49,739 [ APPLAUSE ] 1823 01:06:49,805 --> 01:06:50,639 >> HI, EVERYONE. 1824 01:06:50,706 --> 01:06:52,708 IT'S SO WONDERFUL TO BE HERE 1825 01:06:52,775 --> 01:06:53,876 WITH ALL OF YOU TODAY. 1826 01:06:53,943 --> 01:06:55,811 IT'S GREAT TO LOOK OUT AND SEE 1827 01:06:55,878 --> 01:06:59,682 SO MANY FAMILIAR FACES FROM SO 1828 01:06:59,749 --> 01:07:02,685 MANY DIFFERENT PLACES, COMMUNITY 1829 01:07:02,752 --> 01:07:04,720 ORGANIZERS, ADVOCATES AND 1830 01:07:04,787 --> 01:07:05,821 PATIENTS SO THANK YOU FOR 1831 01:07:05,888 --> 01:07:07,123 ALLOWING ME TO BE HERE WITH YOU 1832 01:07:07,189 --> 01:07:09,492 TODAY, YOU KNOW I WANT TO 1833 01:07:09,558 --> 01:07:10,126 ACKNOWLEDGE ALL THE INCREDIBLE 1834 01:07:10,192 --> 01:07:11,360 PEOPLE THAT ARE A PART OF THE 1835 01:07:11,427 --> 01:07:12,928 WORK WE DO HERE INCLUDING THE 1836 01:07:12,995 --> 01:07:16,866 YOU ISSUE THE AMAZING PATIENTS 1837 01:07:16,932 --> 01:07:18,901 BECAUSE WITHOUT YOU THE PATIENTS 1838 01:07:18,968 --> 01:07:19,935 PARTICIPATE NOTHING OUR 1839 01:07:20,002 --> 01:07:21,837 RESEARCH, ABSOLUTELY NONE OF 1840 01:07:21,904 --> 01:07:23,139 THIS WOULD BE POSSIBLE SEE A BIG 1841 01:07:23,205 --> 01:07:24,306 SHOUT OUT TO YOU EMPLOY SO WE 1842 01:07:24,373 --> 01:07:25,841 HEARD A LOT TODAY ABOUT THE 1843 01:07:25,908 --> 01:07:28,577 IMPACT OF LUPUS AND WE ALL KNOW 1844 01:07:28,644 --> 01:07:30,546 THAT IT IS A DEVASTATING DISEASE 1845 01:07:30,613 --> 01:07:32,415 THAT CAN AFFECT ANY ORGAN 1846 01:07:32,481 --> 01:07:33,849 SYSTEM, THE FLARES CAN BE 1847 01:07:33,916 --> 01:07:35,351 UNPREDICTABLE AND THAT CAN MAKE 1848 01:07:35,418 --> 01:07:38,587 LIFE WITH LUPUS REALLY, REALLY 1849 01:07:38,654 --> 01:07:39,155 DIFFICULT. 1850 01:07:39,221 --> 01:07:40,556 I'M A PEDIATRIC RHEUMATOLOGIST 1851 01:07:40,623 --> 01:07:41,991 SO I'M REALLY INTERESTED IN 1852 01:07:42,057 --> 01:07:44,794 LUPUS THAT STARTS IN CHILDHOOD. 1853 01:07:44,860 --> 01:07:46,562 AND ACTUALLY 1 OUT OF EVERY 5 1854 01:07:46,629 --> 01:07:48,264 LUPUS CASES IS DIAGNOSED BEFORE 1855 01:07:48,330 --> 01:07:49,932 AGE 18 AND WE HEARD A LITTLE 1856 01:07:49,999 --> 01:07:52,701 ABOUT THAT IN THE PATIENT STORY 1857 01:07:52,768 --> 01:07:57,273 EARLIER THIS MORNING WITH 1858 01:07:57,339 --> 01:07:57,573 MRS. FAULK. 1859 01:07:57,640 --> 01:07:59,141 KIDSWITH LUPUS HAVE A VERY 1860 01:07:59,208 --> 01:08:00,743 SEVERE DISEASE AND LOTS OF 1861 01:08:00,810 --> 01:08:02,311 DIFFERENT WAYS SO THEY HAVE MORE 1862 01:08:02,378 --> 01:08:03,813 DISEASE ACTIVITY, THEY HAVE MORE 1863 01:08:03,879 --> 01:08:05,414 OF THE SEVERE ORGAN SYSTEM 1864 01:08:05,481 --> 01:08:08,717 INVOLVEMENT LIKE THEIR KIDNEYS 1865 01:08:08,784 --> 01:08:10,886 OR THEIR BRAINS AND THEY 1866 01:08:10,953 --> 01:08:12,955 ACTUALLY GET MORE ORGAN DAMAGE 1867 01:08:13,022 --> 01:08:15,958 DESPITE HAVING YOUNGER HEALTHIER 1868 01:08:16,025 --> 01:08:16,759 BODIES THAN ADULTS. 1869 01:08:16,826 --> 01:08:18,394 I BECAME REALLY INTERESTED IN 1870 01:08:18,461 --> 01:08:21,597 LUPUS IN TBLOABAL POPULATIONS 1871 01:08:21,664 --> 01:08:22,965 DURING MY TRAINING EMPLOY 1872 01:08:23,032 --> 01:08:24,500 BECAUSE WE HAVE HEARD EARLIER 1873 01:08:24,567 --> 01:08:27,536 TODAY THAT LUPUS IS MORE SEVERE 1874 01:08:27,603 --> 01:08:28,604 AND PREVALENT IN NONWHITE 1875 01:08:28,671 --> 01:08:31,474 POPPULESS AND YOU KNOW JUST 1876 01:08:31,540 --> 01:08:33,008 PRESENTED HOW LUPUS IS MORE 1877 01:08:33,075 --> 01:08:34,276 SEVERE IN CHILDREN AND I WAS 1878 01:08:34,343 --> 01:08:35,778 ASKING THE QUESTION, WELL WHAT 1879 01:08:35,845 --> 01:08:37,379 ABOUT CHILDREN IN AFRICA? 1880 01:08:37,446 --> 01:08:38,948 AND THERE WAS VERY LITTLE DATA 1881 01:08:39,014 --> 01:08:40,449 AT THE TIME, SO THERE WAS 1 1882 01:08:40,516 --> 01:08:42,418 PAPER OF 30 PATIENTS FROM THE 1883 01:08:42,485 --> 01:08:44,186 1990S FROM SOUTH AFRICA AND THAT 1884 01:08:44,253 --> 01:08:46,088 WAS ABOUT IT. 1885 01:08:46,155 --> 01:08:47,823 AND SO WITH THIGH MENTORS AT 1886 01:08:47,890 --> 01:08:49,959 DUKE WHICH IS WHERE I TRAINED, I 1887 01:08:50,025 --> 01:08:52,661 DEVELOPED A COLLABORATION WITH 1888 01:08:52,728 --> 01:08:54,263 AN AMAZING PERSON, DR. CHRIS COT 1889 01:08:54,330 --> 01:08:57,600 AND WENT TO SOUTH AFRICA TO HELP 1890 01:08:57,666 --> 01:08:59,235 HIM CHARACTERIZE THOSE LUPUS 1891 01:08:59,301 --> 01:09:00,402 PATIENTS BECAUSE WHEN I 1892 01:09:00,469 --> 01:09:01,737 CONTACTED HIM, I SAID, YOU KNOW 1893 01:09:01,804 --> 01:09:03,439 I'M NOT SEEING A LOT ABOUT THIS 1894 01:09:03,506 --> 01:09:04,406 IN THE LITERATURE, DO YOU HAVE 1895 01:09:04,473 --> 01:09:06,175 ANY PATIENTS AND HE SAID, I HAVE 1896 01:09:06,242 --> 01:09:07,676 PATIENTS COMING OUT OF MY EARS 1897 01:09:07,743 --> 01:09:08,878 AND THEY'RE SUPER SICK BUT I'M 1898 01:09:08,944 --> 01:09:10,312 HERE TAKING CARE OF THEM AND I 1899 01:09:10,379 --> 01:09:11,814 JUST DON'T REALLY HAVE THE TIME 1900 01:09:11,881 --> 01:09:13,449 AND THE RESOURCES TO REPORT THEM 1901 01:09:13,516 --> 01:09:16,418 IN THE LITERATURE AND SO WE 1902 01:09:16,485 --> 01:09:18,721 WORKED TOGETHER TO CREATE THE 1903 01:09:18,787 --> 01:09:21,790 LARGEST REGISTRY OF LUPUS 1904 01:09:21,857 --> 01:09:22,992 PATIENTS IN SUB-SAHARAN AFRICA 1905 01:09:23,058 --> 01:09:24,493 AND DESCRIBE THEM. 1906 01:09:24,560 --> 01:09:25,427 SO LIKE PEDIATRIC PATIENTS IN 1907 01:09:25,494 --> 01:09:27,630 THE USES, THEY WERE MORE SEVERE 1908 01:09:27,696 --> 01:09:29,732 THAN ADULTS IN THE U.S., BUT 1909 01:09:29,798 --> 01:09:31,333 WITH WE COMPARE CHILDREN TO 1910 01:09:31,400 --> 01:09:33,536 CHILDREN, CHILDREN WITH LUPUS IN 1911 01:09:33,602 --> 01:09:35,738 AFRICA HAD MORE ORGAN DISEASE, 1912 01:09:35,804 --> 01:09:37,373 MORE DAMAGE AND HIGHER MORTALITY 1913 01:09:37,439 --> 01:09:39,808 AND I BECAME REALLY CONVINCED 1914 01:09:39,875 --> 01:09:41,577 THAT STUDYING CHILDHOOD IN ONSET 1915 01:09:41,644 --> 01:09:42,912 LUPUS IN DIVERSE POPULATIONS 1916 01:09:42,978 --> 01:09:43,913 WORLD WIDE IS CRITICAL. 1917 01:09:43,979 --> 01:09:45,981 WE HEARD A BIT TODAY ABOUT SOME 1918 01:09:46,048 --> 01:09:48,217 OF THE HEALTH DISPARITIES THAT 1919 01:09:48,284 --> 01:09:49,318 EXIST IN RESEARCH AND I JUST 1920 01:09:49,385 --> 01:09:52,288 WANT TO KIND OF PUT AN EYE TO 1921 01:09:52,354 --> 01:09:54,290 THE GLOBAL DISPARITIES THAT ALSO 1922 01:09:54,356 --> 01:09:54,490 EXIST. 1923 01:09:54,557 --> 01:09:56,825 SO, IF YOU LOOK AT WHERE MOST OF 1924 01:09:56,892 --> 01:09:58,427 THE WORLD'S CHILDREN LIVE, 1925 01:09:58,494 --> 01:10:00,529 FIGURE A IS A MAP OF THE 1926 01:10:00,596 --> 01:10:02,598 PEDIATRIC POPULATION IN THE 1927 01:10:02,665 --> 01:10:04,833 WORLD, AND MOST OF THE WORLD'S 1928 01:10:04,900 --> 01:10:07,970 CHILDREN LIVE IN LESS RESOURCE 1929 01:10:08,037 --> 01:10:11,206 NATIONS, SO, THE DARKER PINK 1930 01:10:11,273 --> 01:10:14,276 COLORS ASIA SUB-SAHARAN AFRICA, 1931 01:10:14,343 --> 01:10:17,379 SOUTHEAST ASIA IS WHERE MOST OF 1932 01:10:17,446 --> 01:10:18,347 THE WORLD'S CHILDREN LIVE, AND 1933 01:10:18,414 --> 01:10:22,017 IF YOU LOOK AT FIGURE B, IT'S AN 1934 01:10:22,084 --> 01:10:24,853 ALMOST INVERTED MAP WHERE 1935 01:10:24,920 --> 01:10:26,088 THEY'RE LOCATED IN NORTH 1936 01:10:26,155 --> 01:10:27,289 AMERICA, SO VERY FEW CHILDREN 1937 01:10:27,356 --> 01:10:29,158 HAVE ACCESS TO CLINICAL CARE AND 1938 01:10:29,224 --> 01:10:30,826 FURTHER MORE EVEN FEWER HAVE 1939 01:10:30,893 --> 01:10:31,994 ACCESS TO CLINICAL RESEARCH. 1940 01:10:32,061 --> 01:10:34,597 AND THAT REALLY SKEWS OUR 1941 01:10:34,663 --> 01:10:35,564 UNDERSTANDING OF THESE 1942 01:10:35,631 --> 01:10:38,968 POPULATIONS AND ALSO WHAT ARE 1943 01:10:39,034 --> 01:10:39,768 THE BEST--OUR UNDERSTANDING OF 1944 01:10:39,835 --> 01:10:41,203 WHAT ARE THE BEST MEDICINES TO 1945 01:10:41,270 --> 01:10:42,404 TREAT THEM AND BECAUSE I'M A 1946 01:10:42,471 --> 01:10:44,840 PURPOSE WHO THINKS A LOT ABOUT 1947 01:10:44,907 --> 01:10:45,641 GENETICS RESEARCH, THERE ARE 1948 01:10:45,708 --> 01:10:47,676 ALSO A LOT OF FLOABAL 1949 01:10:47,743 --> 01:10:48,277 DISPARITIES AND GENETICS 1950 01:10:48,344 --> 01:10:49,945 RESEARCH THAT HAVE RESULTED FROM 1951 01:10:50,012 --> 01:10:51,213 THESE DISPARITIES AND SO IF YOU 1952 01:10:51,280 --> 01:10:56,986 LOOK AT ALL OF THE PATIENTS IN 1953 01:10:57,052 --> 01:10:59,488 OUR GWAS CATALOG, 80% OF THEM 1954 01:10:59,555 --> 01:11:00,222 ARE OF EUROPEAN ANCESTRY AND THE 1955 01:11:00,289 --> 01:11:02,157 REST OF THE WORLD'S POPULATION 1956 01:11:02,224 --> 01:11:03,058 MAKES UP 20%. 1957 01:11:03,125 --> 01:11:04,159 NOW THERE'S LOTS OF PEOPLE WHO 1958 01:11:04,226 --> 01:11:05,561 REALIZED THIS IS A PROBLEM, NOT 1959 01:11:05,628 --> 01:11:07,429 JUST ME AND THERE'S ASH MAZING 1960 01:11:07,496 --> 01:11:08,631 TEAMS OF PEOPLE WITH GREAT 1961 01:11:08,697 --> 01:11:10,265 EFFORTS LIKE ALL OF US AND MANY 1962 01:11:10,332 --> 01:11:11,433 OTHER THINGS WORKING TO ADDRESS 1963 01:11:11,500 --> 01:11:13,836 THIS BUT WE'VE GOT A LONG WAY TO 1964 01:11:13,902 --> 01:11:15,404 GO SO WE HAVE A WHILE TO GET 1965 01:11:15,471 --> 01:11:15,604 THERE. 1966 01:11:15,671 --> 01:11:18,641 FOURTH 1967 01:11:18,707 --> 01:11:20,275 --NOW WE KNOW THAT THERE IS SOME 1968 01:11:20,342 --> 01:11:23,445 PART OF LUPUS THIS AS HAS A 1969 01:11:23,512 --> 01:11:24,980 GENETIC COMPONENT AND ALTHOUGH 1970 01:11:25,047 --> 01:11:26,281 WE DON'T FULLY UNDERSTAND THE 1971 01:11:26,348 --> 01:11:28,117 CAUSES OF LUPUS WE THINK PEOPLE 1972 01:11:28,183 --> 01:11:29,652 HAVE A CERTAIN GENETIC 1973 01:11:29,718 --> 01:11:30,686 SUSCEPTIBILITY ASK THERE ARE 1974 01:11:30,753 --> 01:11:31,720 ENVIRONMENTAL EVENTS THAT 1975 01:11:31,787 --> 01:11:33,288 TRIGGER YOU INTO CLINICAL 1976 01:11:33,355 --> 01:11:36,925 AUTOIMMUNITY AND IF YOU HAVE A 1977 01:11:36,992 --> 01:11:39,094 TWIN WITH LUPUS, AN IDENTICAL 1978 01:11:39,161 --> 01:11:42,197 TWIN YOUR CHANCE OF HAVING LUPUS 1979 01:11:42,264 --> 01:11:44,266 IS SOMEWHERE FROM 25-50%, SO 1980 01:11:44,333 --> 01:11:45,501 GENETICS ARE INVOLVED AND YOU 1981 01:11:45,567 --> 01:11:47,503 CAN HAVE RARE VARIANTS WHICH ARE 1982 01:11:47,569 --> 01:11:49,371 VARIANTS THAT OCCUR IN THE 1983 01:11:49,438 --> 01:11:51,340 PROTEIN CODING REGION OF THE 1984 01:11:51,407 --> 01:11:52,307 DNA, THEY USUALLY CAUSE THE 1985 01:11:52,374 --> 01:11:53,609 PROTEIN TO ACT IN A DIFFERENT 1986 01:11:53,676 --> 01:11:55,210 WAY AND ARE MORE LIKELY TO CAUSE 1987 01:11:55,277 --> 01:11:56,879 A PROBLEM AND THEN THERE ARE 1988 01:11:56,945 --> 01:11:58,614 COMMON VARIANTS SO THOSE ARE 1989 01:11:58,681 --> 01:11:59,748 USUALLY LESS DAMAGING BECAUSE 1990 01:11:59,815 --> 01:12:00,683 THEY OCCUR COMMONLY IN THE 1991 01:12:00,749 --> 01:12:02,418 POPULATION AND YOU MIGHT NEED 1992 01:12:02,484 --> 01:12:03,986 ACCUMULATION OF THOSE AND 1993 01:12:04,053 --> 01:12:05,020 ENVIRONMENTAL EVENT, TO KIND OF 1994 01:12:05,087 --> 01:12:07,022 CAUSE A PROBLEM, BUT WE REALLY 1995 01:12:07,089 --> 01:12:17,633 HAVEN'T LOOKED AT THIS IN A VERY 1996 01:12:21,103 --> 01:12:23,305 COMMON VARIANT IN THE ADUTS WE 1997 01:12:23,372 --> 01:12:24,973 WE DON'T FULLY UNDERSTAND THE 1998 01:12:25,040 --> 01:12:26,475 GENETIC ARCHITECTURE OF WILL YOU 1999 01:12:26,542 --> 01:12:26,742 PLEASEUS. 2000 01:12:26,809 --> 01:12:29,778 SO OUR LAB WANTED TO GETTA AT 2001 01:12:29,845 --> 01:12:31,113 THAT TO SEQUENCE LARGE MEMBERS 2002 01:12:31,180 --> 01:12:32,514 OF PEDEIAT AND I CAN ADULT 2003 01:12:32,581 --> 01:12:33,816 PATIENTS AND REALLY UNDERSTAND 2004 01:12:33,882 --> 01:12:36,018 OF THAT GENETIC COMPONENT TO 2005 01:12:36,085 --> 01:12:37,219 LUPUS, LET'S LOOK UNDER THE 2006 01:12:37,286 --> 01:12:39,421 HOOD, LET'S LOOK AT KIDS WHO ARE 2007 01:12:39,488 --> 01:12:41,290 MORE LIKELY TO HAVE GENETIC 2008 01:12:41,356 --> 01:12:42,891 KRIEEVERS OF THESE DISEASE 2009 01:12:42,958 --> 01:12:44,193 BECAUSE OF EARLY AND SEVERE 2010 01:12:44,259 --> 01:12:45,794 ONSET DISEASE AND LET'S FIGURE 2011 01:12:45,861 --> 01:12:50,866 IT OUT OF RARE VARIANTS, 2012 01:12:50,933 --> 01:12:51,333 ENVIRONMENTAL EVENTS. 2013 01:12:51,400 --> 01:12:53,435 AND SO WE CREATED THE GLOBAL 2014 01:12:53,502 --> 01:12:54,570 COLLABORATION FOR ADVANCING 2015 01:12:54,636 --> 01:12:55,437 GENETICS RESEARCH. 2016 01:12:55,504 --> 01:12:56,972 WE HAVE,AISE MAZING PATIENTING 2017 01:12:57,039 --> 01:13:00,242 HERE AT THE NIH AND WE HAVE MANY 2018 01:13:00,309 --> 01:13:03,445 WONDERFUL COLLABORATORS AROUND 2019 01:13:03,512 --> 01:13:05,881 THE WORLD INCLUDING CARA, A 2020 01:13:05,948 --> 01:13:06,715 PEDIATRIC ORGANIZATION TO GET 2021 01:13:06,782 --> 01:13:08,050 PATIENTS FROM ALL OVER NORTH 2022 01:13:08,117 --> 01:13:09,918 AMERICA AND COLLABORATORS WITH 2023 01:13:09,985 --> 01:13:12,087 CANADA, MEXICO, SOUTH AFFRIC 2024 01:13:12,154 --> 01:13:13,889 ATHE UK AND PAKISTAN TO INCREASE 2025 01:13:13,956 --> 01:13:15,057 DIVERSITY OF OUR POPULATIONS AND 2026 01:13:15,124 --> 01:13:16,825 I'M THOT GOING TO GO TOO MUCH 2027 01:13:16,892 --> 01:13:18,260 INTO THE WERE SIDE OF IT, BUT 2028 01:13:18,327 --> 01:13:19,695 JUST TO SAY, YOU KNOW WE HAD A 2029 01:13:19,762 --> 01:13:22,698 PAPER COME OUT LAST YEAR, IT 2030 01:13:22,765 --> 01:13:24,566 KIND OF STARTING TO LOOK AT 2031 01:13:24,633 --> 01:13:26,101 THESE POPULATIONS, THESE DIVERSE 2032 01:13:26,168 --> 01:13:27,603 POPULATIONS AROUND THE EXPORLD 2033 01:13:27,669 --> 01:13:29,972 WOO AND WE DID A TODAY OF TRIOS, 2034 01:13:30,038 --> 01:13:33,742 HAD IS 1 OF THE OTHER ADVANTAGES 2035 01:13:33,809 --> 01:13:35,144 OF USING PEDIATRIC POPULATIONS, 2036 01:13:35,210 --> 01:13:39,181 CAN YOU COMPARE THEM TO THE 2037 01:13:39,248 --> 01:13:41,383 PARENTS AND THAT CAN MAKE THE 2038 01:13:41,450 --> 01:13:42,618 INFORMATION MORE EFFECTIVE AND 2039 01:13:42,684 --> 01:13:44,920 WE LOOK AT HOW OFTEN ARE THOSE 2040 01:13:44,987 --> 01:13:45,788 TRANSMIT FRIDAY PARENT TO CHILD. 2041 01:13:45,854 --> 01:13:48,690 AND WHEN WE LOOKED WE FOUND, WE 2042 01:13:48,757 --> 01:13:51,660 DIDN'T FIND ANYTHING IN THOSE 2043 01:13:51,727 --> 01:13:54,530 COMMON VARIANTS, WE HAD A VERY 2044 01:13:54,596 --> 01:13:55,564 SMALL POPULATION, ONLY 83 2045 01:13:55,631 --> 01:13:56,965 PATIENTS SO THAT'S NOT SUPER 2046 01:13:57,032 --> 01:13:58,700 PRIZING BUT WHAT WAS REALLY 2047 01:13:58,767 --> 01:14:00,102 STRIKING WAS HOW ENRICHED THIS 2048 01:14:00,169 --> 01:14:03,438 POPULATION WAS IN RARE VARIANTS, 2049 01:14:03,505 --> 01:14:05,140 SO THOSE VARIANTS IN PROTEINS 2050 01:14:05,207 --> 01:14:07,242 CAUSING A PROBLEM AND WE FOUND 2051 01:14:07,309 --> 01:14:08,443 SOME PRETTY INTERESTING 1S, SOME 2052 01:14:08,510 --> 01:14:10,379 OF WHICH WERE GOING TO LOOK A 2053 01:14:10,445 --> 01:14:11,480 BIT FURTHER INTO DOWN THE ROAD 2054 01:14:11,547 --> 01:14:12,915 BUT THIS KIND OF JUST CONFIRMED 2055 01:14:12,981 --> 01:14:14,449 TO US THAT THIS IS AN IMPORTANT 2056 01:14:14,516 --> 01:14:16,084 POPULATION IN WHICH TO STUDY THE 2057 01:14:16,151 --> 01:14:18,821 GENETICS OF THIS DISEASE. 2058 01:14:18,887 --> 01:14:19,888 SO IN CONCLUSION, IT'S IMPORTANT 2059 01:14:19,955 --> 01:14:21,657 TO STUDY THE GENETICS OF LUPUS, 2060 01:14:21,723 --> 01:14:23,926 IT'S IMPORTANT TO DO THIS IN A 2061 01:14:23,992 --> 01:14:25,661 WAY THAT'S ENCLUESIVE AND 2062 01:14:25,727 --> 01:14:27,429 INCLUDES A DIVERSE GROUP OF 2063 01:14:27,496 --> 01:14:29,398 PATES BOTH AGE, GEOGRAPHIC 2064 01:14:29,464 --> 01:14:32,668 LOCATION AND ANCESTRY, AND THE 2065 01:14:32,734 --> 01:14:34,436 MORE THAT WE LEARN ABOUT THIS, 2066 01:14:34,503 --> 01:14:36,271 HOPEFULLY WE CAN THAT I CAN THIS 2067 01:14:36,338 --> 01:14:38,373 FROM THIS BROAD CLINICAL 2068 01:14:38,440 --> 01:14:39,541 EMBRELLAA OF LUPUS WE HEARD 2069 01:14:39,608 --> 01:14:41,276 ABOUT EARLIER TODAY TO MORE 2070 01:14:41,343 --> 01:14:42,711 PRECISE IN LECULAR DIAGNOSIS, SO 2071 01:14:42,778 --> 01:14:44,413 WE CAN BETTER TARGET TREATMENTS 2072 01:14:44,479 --> 01:14:46,148 REDUCE SIDE EFFECTS AND IMPROVE 2073 01:14:46,215 --> 01:14:46,715 OUTCOMES FOR PATIENTS. 2074 01:14:46,782 --> 01:14:49,151 AND THE MORE WE LEARN ABOUT 2075 01:14:49,218 --> 01:14:53,755 LUPUS PATIENTS EVERYWHERE, THE 2076 01:14:53,822 --> 01:14:55,390 MORE WE ANYWHERE, THE MORE WE 2077 01:14:55,457 --> 01:14:57,125 LEARN ABOUT LUPUS PATIENTS 2078 01:14:57,192 --> 01:14:57,426 EVERYWHERE. 2079 01:14:57,492 --> 01:14:59,294 AND WE HAVE AN ACTIVE GENETICS 2080 01:14:59,361 --> 01:15:00,495 STUDY HERE AT NIAMS. 2081 01:15:00,562 --> 01:15:01,630 SO IF YOU'RE INTERESTED REACH 2082 01:15:01,697 --> 01:15:03,866 OUT TO US AND LET US KNOW WITH 2083 01:15:03,932 --> 01:15:06,869 THAT I WISH YOU ALL HAPPY LUPUS 2084 01:15:06,935 --> 01:15:07,703 AWARENESS MONTH AND THANK YOU SO 2085 01:15:07,769 --> 01:15:11,406 UPON FOR ALL YOU DO TO HELP US 2086 01:15:11,473 --> 01:15:12,674 WITH OUR RESEARCH. 2087 01:15:12,741 --> 01:15:18,313 [ APPLAUSE ] 2088 01:15:18,380 --> 01:15:21,450 >> THANK YOU DR. LEWANDOWSKI, 2089 01:15:21,516 --> 01:15:24,353 NEXT WE HAVE DR. GUPTA, DIRECTOR 2090 01:15:24,419 --> 01:15:26,421 OF PATHWAY DRICH THERAPEUTICS 2091 01:15:26,488 --> 01:15:28,557 AND LUPUS DISEASES IN NIAMS AND 2092 01:15:28,624 --> 01:15:30,559 HE WILL SPEAK ON RARE DISEASE 2093 01:15:30,626 --> 01:15:34,396 SCOEVERYS IN LUPUS. 2094 01:15:34,463 --> 01:15:38,433 --DISCOVERIES IN LUPUS. 2095 01:15:38,500 --> 01:15:41,303 >> HI, WELL, THANK YOU JULIE FOR 2096 01:15:41,370 --> 01:15:42,237 THAT KIND INTRODUCTION AND THANK 2097 01:15:42,304 --> 01:15:48,277 YOU ALL FOR I --JOINING US FORE 2098 01:15:48,343 --> 01:15:49,278 CELEBRATION OF 30 YEARS OF 2099 01:15:49,344 --> 01:15:51,280 CLINICAL RESEARCH IN LUPUS AT 2100 01:15:51,346 --> 01:15:53,916 NIH AND THAT SOMEONE WHO'S BEEN 2101 01:15:53,982 --> 01:15:57,452 PART OF THE GROUP FOR NOW 13 OUT 2102 01:15:57,519 --> 01:15:58,987 OF THOSE 30 YEARS, IT'S REALLY 2103 01:15:59,054 --> 01:16:00,989 BEEN AN AMAZING JOURNEY, I CAN 2104 01:16:01,056 --> 01:16:03,759 TELL YOU THAT AND I WANTED TO 2105 01:16:03,825 --> 01:16:06,862 TAKE THIS OPPORTUNITY TO TELL 2106 01:16:06,929 --> 01:16:09,798 YOU A STORY, DURING THIS JOURNEY 2107 01:16:09,865 --> 01:16:13,602 AND HOW WE ARE LEVERAGING THIS 2108 01:16:13,669 --> 01:16:15,337 UNIQUE INSTITUTION, THE 2109 01:16:15,404 --> 01:16:17,306 INTRAMURAL NIH, AND THE CLINICAL 2110 01:16:17,372 --> 01:16:23,378 CENTER WHERE YOU ARE SEATED NOW. 2111 01:16:23,445 --> 01:16:24,780 AND THESE UNIQUE AND RARE 2112 01:16:24,846 --> 01:16:26,281 PATIENTS WHO WE SEE HAVE THESE 2113 01:16:26,348 --> 01:16:27,649 RARE DISEASES AND HOW WE ARE 2114 01:16:27,716 --> 01:16:31,219 ABLE TO HELP THOSE PATIENTS WITH 2115 01:16:31,286 --> 01:16:32,854 THOSE RARE DISEASES FROM WHAT WE 2116 01:16:32,921 --> 01:16:43,465 LEARNED IN STUDIES IN LUPUS, AS 2117 01:16:44,299 --> 01:16:45,934 WELL AS THOSE OF OUR LUPUS 2118 01:16:46,001 --> 01:16:46,201 PATIENTS. 2119 01:16:46,268 --> 01:16:48,470 SO WE TALKED A LOT ABOUT HOW 2120 01:16:48,537 --> 01:16:50,605 LUPUS IS SO HIDE ROG NOWS, FOR 2121 01:16:50,672 --> 01:16:52,341 SO MANY YEARS WE'VE BEEN 2122 01:16:52,407 --> 01:16:53,875 CLASSIFYING OUR DEC BASED ON 2123 01:16:53,942 --> 01:16:55,277 CLINICAL PHENOTYPE BUT WE ALL 2124 01:16:55,344 --> 01:17:03,552 KNOW, I MEAN, OUR LUPUS PATIENTS 2125 01:17:03,618 --> 01:17:08,857 ARE VERY HED ROMG NOWS. 2126 01:17:08,924 --> 01:17:11,560 BUT WHAT WE REALLY NEED TO START 2127 01:17:11,626 --> 01:17:12,160 DOING IS IDENTIFYING PATIENT 2128 01:17:12,227 --> 01:17:13,929 WHEN IS WE TALK TO THEM AND LOOK 2129 01:17:13,996 --> 01:17:15,230 FURTHER AND MORE DETAILED INTO 2130 01:17:15,297 --> 01:17:18,000 WHAT ARE THE PATHWAYS THAT ARE 2131 01:17:18,066 --> 01:17:19,835 DISREGULATED IN THESE PATIENTS 2132 01:17:19,901 --> 01:17:23,238 AT THAT GIVEN PERIOD OF TIME AND 2133 01:17:23,305 --> 01:17:27,209 WOPS WE SAW DOING THAT WE WILL 2134 01:17:27,275 --> 01:17:28,844 FIND PERHAPS A DISEASE THAT'S 2135 01:17:28,910 --> 01:17:30,245 DRIVING AT 1 TIME IN NAPATIENT 2136 01:17:30,312 --> 01:17:32,314 MAY BE NOT THAT UPREGULATED AND 2137 01:17:32,381 --> 01:17:33,382 DRIVING THE DISEASE IN ANOTHER 2138 01:17:33,448 --> 01:17:34,649 PATIENT AND THAT OTHER PATIENT 2139 01:17:34,716 --> 01:17:40,055 MY NEED A DIFFERENT THERAPY THAN 2140 01:17:40,122 --> 01:17:42,124 WHAT THE DEC CALLED NICK C AND 2141 01:17:42,190 --> 01:17:44,192 WHEN WE DO START LOOKING AT THIS 2142 01:17:44,259 --> 01:17:46,428 IN THIS WAY OUR HOPE IS THAT WE 2143 01:17:46,495 --> 01:17:48,630 WILL ACTUALLY START FINDING 2144 01:17:48,697 --> 01:17:50,665 PATIENTS WHO MAY HAVE A 2145 01:17:50,732 --> 01:17:52,634 COMPLETELY DIFFERENT DISEASE 2146 01:17:52,701 --> 01:17:54,503 DRIVEN BY THEIR OWN UNIQUE 2147 01:17:54,569 --> 01:17:55,537 PATHWAYS HIDDEN WITHIN THIS 2148 01:17:55,604 --> 01:17:59,374 GROUP THAT WE'VE GIVEN THE NAME 2149 01:17:59,441 --> 01:18:00,108 OF LUPUS. 2150 01:18:00,175 --> 01:18:01,843 SO WE'VE APPROACHED THIS BY 2151 01:18:01,910 --> 01:18:04,012 STUDYING AS DR. KAPLAN MENTIONED 2152 01:18:04,079 --> 01:18:05,747 BY FOCUSING STUDIES ON INNATE 2153 01:18:05,814 --> 01:18:07,849 IMMUNE SYSTEM WHICH IS 1 ARM OF 2154 01:18:07,916 --> 01:18:11,019 THE IMMUNE SYSTEM, IT'S YOUR 2155 01:18:11,086 --> 01:18:20,629 FIRST LINE OF DEFENSE AGAINST 2156 01:18:20,695 --> 01:18:27,702 INFECTION AND AS PART AS OF THE 2157 01:18:27,769 --> 01:18:29,204 NEUTROPHILS, AND WE KNOW THESE 2158 01:18:29,271 --> 01:18:30,338 ARE MOLECULES THAT HELP FIGHT 2159 01:18:30,405 --> 01:18:32,274 INFECTIONS BUT WE ALSO KNOW THEY 2160 01:18:32,340 --> 01:18:36,144 ARE VERY HIGH LE UPREGULATED IN 2161 01:18:36,211 --> 01:18:36,344 LUPUS. 2162 01:18:36,411 --> 01:18:41,249 AND WE ALSO STUDY THE 2163 01:18:41,316 --> 01:18:43,385 INTERFERONS BY STUDYING THE 2164 01:18:43,452 --> 01:18:46,088 SIGNAL THE OF JAKSTAT PATHWAY, 2165 01:18:46,154 --> 01:18:48,523 SO WHAT HAPPEN WHEN IS THEY BIND 2166 01:18:48,590 --> 01:18:48,790 ON CELLS? 2167 01:18:48,857 --> 01:18:50,325 THEY ACTIVATE THESE CHANNELS 2168 01:18:50,392 --> 01:18:51,893 KINASES WHICH ARE ENZYMES BOUND 2169 01:18:51,960 --> 01:18:54,429 TO THAT RECEPTOR, THERE'S 4 OF 2170 01:18:54,496 --> 01:18:57,766 THEM, WHICH IN TURN ACTIVATE THE 2171 01:18:57,833 --> 01:18:58,834 TRANSCRIPTION MOLECULES CALLED 2172 01:18:58,900 --> 01:19:00,502 STATS THERE ARE 7 OF THEM, WHICH 2173 01:19:00,569 --> 01:19:02,804 EVENT WHY ULTIMATELILY LEADS TO 2174 01:19:02,871 --> 01:19:07,375 A CASCADE OF BASICALLY LEADING 2175 01:19:07,442 --> 01:19:07,909 TO INFLAMMATION. 2176 01:19:07,976 --> 01:19:14,816 AND WE KNOW AS I MENTIONED 2177 01:19:14,883 --> 01:19:15,550 INTERFERON SIGNALING AND 2178 01:19:15,617 --> 01:19:17,152 PATHOGENIC IN OUR PATIENTS AND 2179 01:19:17,219 --> 01:19:19,187 STUDIES DONE HERE BY DR. OSHAY 2180 01:19:19,254 --> 01:19:23,859 AND OTHERS, WE NOW HAVE DRUGS 2181 01:19:23,925 --> 01:19:25,660 THAT CAN TARGET THESE KINASES 2182 01:19:25,727 --> 01:19:28,964 AND THEY'RE APPROVED FOR OTHER 2183 01:19:29,030 --> 01:19:30,031 DISEASES LIKE RHEUMATOID 2184 01:19:30,098 --> 01:19:30,999 ARTHRITIS, HOWEVER, WHEN WE AND 2185 01:19:31,066 --> 01:19:32,868 OTHERS LOOK AT USING THIS DRUG 2186 01:19:32,934 --> 01:19:36,338 IN LUPUS, THE RESULTS HAVE BEEN 2187 01:19:36,404 --> 01:19:36,538 MIXED. 2188 01:19:36,605 --> 01:19:38,173 WE CLEARLY KNOW THERE'S A SUBSET 2189 01:19:38,240 --> 01:19:39,474 OF PATIENT WHO IS DO RESPOND 2190 01:19:39,541 --> 01:19:40,842 BETTER AND WE NEED MORE STUDIES 2191 01:19:40,909 --> 01:19:43,245 TO ELECTRIC AT IT MORE FURTHER. 2192 01:19:43,311 --> 01:19:46,715 ANOTHER APPROACH THAT I'VE TAKEN 2193 01:19:46,781 --> 01:19:48,350 IS LOOKING AT THESE PATIENTS WE 2194 01:19:48,416 --> 01:19:51,820 SEER HERE AT NIH WHICH HAVE 2195 01:19:51,887 --> 01:19:54,055 GENETIC DETECTS IN THIS CRITICAL 2196 01:19:54,122 --> 01:19:57,826 MOLECULES CALLED STATS, AS PART 2197 01:19:57,893 --> 01:20:00,829 OF THE JAKSTAT PATHWAY AND 1 OF 2198 01:20:00,896 --> 01:20:04,799 THESE RARE MONOGENIC DEC IS 2199 01:20:04,866 --> 01:20:05,367 CALLED JOB SYNDROME. 2200 01:20:05,433 --> 01:20:07,936 NOW IT'S A FAIRLY RARE DEC, 2201 01:20:08,003 --> 01:20:11,706 THERE'S ABOUT 300 REPORTED CASES 2202 01:20:11,773 --> 01:20:13,041 WORLD WIDE. 2203 01:20:13,108 --> 01:20:15,911 AND LIKE THE BIBLICAL CHARACTER 2204 01:20:15,977 --> 01:20:17,145 JOB UNFORTUNATE PATIENTS GET 2205 01:20:17,212 --> 01:20:19,915 WIDE SPREAD SKIN INFECTIONS, 2206 01:20:19,981 --> 01:20:23,018 BOILS, STEF LO CAUCUS AND CANDID 2207 01:20:23,084 --> 01:20:23,985 A INFECTIONS AND THE MUTATION 2208 01:20:24,052 --> 01:20:25,353 THEY HAVE SIGNIFY LOSS OF 2209 01:20:25,420 --> 01:20:29,391 FUNCTION MUTATION IN THEIR STAT 2210 01:20:29,457 --> 01:20:30,025 3 MOLECULE. 2211 01:20:30,091 --> 01:20:31,860 A FEW YEARS AGO WE WERE 2212 01:20:31,927 --> 01:20:34,596 CONSULTED TO SEE A JOB'S PATIENT 2213 01:20:34,663 --> 01:20:36,498 WHO ALSO HAD LUPUS, THIS WAS 2214 01:20:36,565 --> 01:20:37,766 VERY INTRIGUING TO US BECAUSE 2215 01:20:37,832 --> 01:20:40,402 WHEN PEOPLE HAVE LOOKED AT STAT 2216 01:20:40,468 --> 01:20:43,371 3, THIS MOLECULE IN LUPUS, IT'S 2217 01:20:43,438 --> 01:20:44,806 ACTUALLY OVEREXPRESSED AND THERE 2218 01:20:44,873 --> 01:20:46,441 ARE TALKS OF TARGETING THIS IN 2219 01:20:46,508 --> 01:20:48,310 SOME WAY AND BLOCKING IT SO THAT 2220 01:20:48,376 --> 01:20:50,612 WE CAN HELP LUPUS PATIENTS BUT 2221 01:20:50,679 --> 01:20:52,681 HERE WE HAVE AIAN JOB SYNDROME 2222 01:20:52,747 --> 01:20:55,183 PATIENT WHO IS DOES NOT HAVE A 2223 01:20:55,250 --> 01:20:58,820 FUNCTIONING STAT 3 BUT ALSO HAS 2224 01:20:58,887 --> 01:20:59,020 LUPUS. 2225 01:20:59,087 --> 01:21:01,489 SO WE WERE VERY INTRIGUED, WE 2226 01:21:01,556 --> 01:21:03,592 COLLABORATED WITH THE NIAID 2227 01:21:03,658 --> 01:21:04,759 COLLEAGUES WHO AGAIN SEE THESE 2228 01:21:04,826 --> 01:21:06,194 RARE PATIENTS AND THEY HAVE THE 2229 01:21:06,261 --> 01:21:09,564 LARGEST COHORT IN THE WORLD 2230 01:21:09,631 --> 01:21:12,534 ABOUT 160 PATIENTS HERE WITH 2231 01:21:12,601 --> 01:21:14,035 JOB'S AND YES INDEED, 10 OF 2232 01:21:14,102 --> 01:21:17,138 THESE PATIENTS HAD LUPUS LIKE 2233 01:21:17,205 --> 01:21:18,440 MEN FESTATIONS, NOW THAT 2234 01:21:18,506 --> 01:21:19,174 ABSOLUTE NUMBER LOOKS LOW BUT 2235 01:21:19,241 --> 01:21:22,277 WHEN YOU LOOK AT THE PREVALENCE, 2236 01:21:22,344 --> 01:21:24,813 6.3% IN JOB'S WHEN YOU LOOK AT 2237 01:21:24,879 --> 01:21:25,914 THE REGULAR PREVALENCE OF LUPUS 2238 01:21:25,981 --> 01:21:27,983 IN THE POPULATION, THAT'S A 21 2239 01:21:28,049 --> 01:21:30,118 FOLD INCREASE IN PREVALENCE OF 2240 01:21:30,185 --> 01:21:32,354 LUPUS IN JOB, SO THEY'RE ENRICH 2241 01:21:32,420 --> 01:21:35,757 INDEED IN POPULATION, MOST OF 2242 01:21:35,824 --> 01:21:37,125 THESE PATIENTS ARE WOMEN, NEARLY 2243 01:21:37,192 --> 01:21:41,029 ALL OF THEM HAD TYPICAL LUPUS 2244 01:21:41,096 --> 01:21:42,864 ANTIBODIES, AND 50% OF THEM HAD 2245 01:21:42,931 --> 01:21:45,100 A SEVERE KIND OF LUPUS THAT 2246 01:21:45,166 --> 01:21:51,573 INFECTED THEIR KIDNEY LUPUS 2247 01:21:51,640 --> 01:21:51,973 NEPHRITIS. 2248 01:21:52,040 --> 01:21:53,441 AND WHEN WE GOT BLOOD AT THEM 2249 01:21:53,508 --> 01:21:57,345 AND LOOKED AT IT IN OUR LABS WE 2250 01:21:57,412 --> 01:21:58,413 FOUND AN ENACTIVATED IMMUNE 2251 01:21:58,480 --> 01:21:59,748 SYSTEM WITH ACTIVATION OF THE 2252 01:21:59,814 --> 01:22:02,050 NUTRIFILLS THEY WERE MAKING 2253 01:22:02,117 --> 01:22:05,086 ANTIBODIES AGAINST THESE 2254 01:22:05,153 --> 01:22:06,521 NEUTROPHILIC CONDUCTS AND 2255 01:22:06,588 --> 01:22:07,122 ACTIVATED THE PATHWAY. 2256 01:22:07,188 --> 01:22:08,290 NOW WHAT WAS REALLY INTRIGUING 2257 01:22:08,356 --> 01:22:10,525 NOW THAT THIS ACTIVATION OF THIS 2258 01:22:10,592 --> 01:22:11,993 INNATE IMMUNE PATHWAY WAS NOT 2259 01:22:12,060 --> 01:22:13,962 JUST RESTRICT OF THROUGH 2260 01:22:14,029 --> 01:22:15,563 PATIENTS WITH JOB'S AND LUPUS, 2261 01:22:15,630 --> 01:22:18,700 IT WAS IN ALL JOB'S PATIENTS, 2262 01:22:18,767 --> 01:22:20,101 SO, WHAT'S GOING ON? 2263 01:22:20,168 --> 01:22:22,037 TURNS OUT WHEN YOU ACTIVATE YOUR 2264 01:22:22,103 --> 01:22:24,906 STAT 3, YOU END UP PRODUCING 2265 01:22:24,973 --> 01:22:27,342 THIS MOLECULE CALLED SOX3, WHICH 2266 01:22:27,409 --> 01:22:32,814 IS ABLE TO BLOCK THE SIGNALING 2267 01:22:32,881 --> 01:22:34,082 OF INTERFERONS BUT BECAUSE THESE 2268 01:22:34,149 --> 01:22:35,517 PATIENTS DO NOT HAVE AN 2269 01:22:35,583 --> 01:22:37,018 ACTIVATION, DO NOT HAVE A 2270 01:22:37,085 --> 01:22:40,455 FUNCTION AT STAT 3, THEY DO NOT 2271 01:22:40,522 --> 01:22:43,191 PRODUCE ENOUGH SOX 3 AND THUS 2272 01:22:43,258 --> 01:22:45,860 THE PATHWAYS UPREGULATED LEADING 2273 01:22:45,927 --> 01:22:46,561 TO INFLAMMATION. 2274 01:22:46,628 --> 01:22:49,197 SO WHAT DO WE DO WITH THESE 2275 01:22:49,264 --> 01:22:51,433 PATIENTS WHO HAVE THESE IMMUNO 2276 01:22:51,499 --> 01:22:54,269 DEFICIENCY, THEY HAVE INFECTIONS 2277 01:22:54,336 --> 01:22:56,571 AND THEY HAVE SEVERE LUPUS IN 2278 01:22:56,638 --> 01:23:00,742 ADDITION THEY HAVEN'T ACTIVATED 2279 01:23:00,809 --> 01:23:03,044 IMMUNE--INNATE IMMUNE SYSTEM. 2280 01:23:03,111 --> 01:23:04,646 NOW I MENTIONED WE HAVE A DRUG 2281 01:23:04,713 --> 01:23:08,216 NOW THAT IS ABLE TO BLOCK THE 2282 01:23:08,283 --> 01:23:09,384 ACTIVATED INNATE IMMUNE SYSTEM 2283 01:23:09,451 --> 01:23:11,353 THAT CLASS OF DRUG IS CALLED 2284 01:23:11,419 --> 01:23:14,222 JACK INHIBITORS AND HERE WE 2285 01:23:14,289 --> 01:23:15,824 HAVE, A FAIRLY HOMOGENOUS GROUP 2286 01:23:15,890 --> 01:23:18,793 OF PATIENTS WITH THE SINGLE GENE 2287 01:23:18,860 --> 01:23:20,762 MUTATION THAT IS WITH LUPUS AND 2288 01:23:20,829 --> 01:23:23,098 WE HAVE A TARGETED DRUG THAT CAN 2289 01:23:23,164 --> 01:23:24,399 TARGET THE PATHWAY THAT'S 2290 01:23:24,466 --> 01:23:28,403 AFFECTED IN THESE PATIENTS AND 2291 01:23:28,470 --> 01:23:29,938 WE'VE STUDIED THIS DRUG IN OUR 2292 01:23:30,004 --> 01:23:31,673 PATIENTS WITH LUPUS, SO NOW WE 2293 01:23:31,740 --> 01:23:33,908 HAVE A CLINICAL PROTOCOL GOING 2294 01:23:33,975 --> 01:23:37,145 WITH OUR COLLABORATORS AT NAID, 2295 01:23:37,212 --> 01:23:38,246 WHERE WE WILL BE TREATING 2296 01:23:38,313 --> 01:23:44,619 PATIENTS WITH JOB'S SYNDROME AD 2297 01:23:44,686 --> 01:23:48,523 JACK INHIBITORS AND IN 2298 01:23:48,590 --> 01:23:49,157 COLLABORATION WITH DERMATOLOGY 2299 01:23:49,224 --> 01:23:50,325 COLLEAGUES WE WILL LOOK AT HOW 2300 01:23:50,392 --> 01:23:52,527 THEY DO CLINICALLY AS WELL AS 2301 01:23:52,594 --> 01:23:54,028 DOING EXTENSIVE MECHANISTIC 2302 01:23:54,095 --> 01:23:55,163 STUDIESAs WELL AS LOOKING AT 2303 01:23:55,230 --> 01:24:00,335 TISSUE LEVEL AND WHAT'S GOING ON 2304 01:24:00,402 --> 01:24:04,472 IN THEIR SKIN . 2305 01:24:04,539 --> 01:24:06,908 SO LASTLY, WITH THIS 2306 01:24:06,975 --> 01:24:07,642 COLLABORATION WITH NIAID, NOW 2307 01:24:07,709 --> 01:24:10,211 WHAT WE DO IS NOT JUST LOOK AT 2308 01:24:10,278 --> 01:24:13,114 THE STAT 3 LOSS OF FUNCTION 2309 01:24:13,181 --> 01:24:17,685 PATIENTS WITH JOBS, WE NOW HAVE 2310 01:24:17,752 --> 01:24:19,521 ACCESS TO RARE ERDISEASES LIKE 2311 01:24:19,587 --> 01:24:20,922 PATIENT WITH STAT 3 GAIN OF 2312 01:24:20,989 --> 01:24:22,257 FUNCTION EMPLOY WE HAVE PATIENTS 2313 01:24:22,323 --> 01:24:24,359 WITH STAT 1 GAIN OF FUNCTION, 2314 01:24:24,426 --> 01:24:25,160 ANOTHER RARE DISEASE AND A AT 2315 01:24:25,226 --> 01:24:27,362 THAT TIME 1 LOSS OF FUNCTION AND 2316 01:24:27,429 --> 01:24:29,931 BY STUDYING THESE PATIENTS WITH 2317 01:24:29,998 --> 01:24:31,933 THESE RARE MONOGENIC DISEASES, 2318 01:24:32,000 --> 01:24:33,067 WHAT WE'RE REALLY TRYING TO 2319 01:24:33,134 --> 01:24:35,236 SUNDAY HOW DOES THE JACK STAT 2320 01:24:35,303 --> 01:24:36,070 PATHWAY WORK? 2321 01:24:36,137 --> 01:24:38,273 HOW DO STAT 1 AND 3, THESE 2 2322 01:24:38,339 --> 01:24:39,874 MOLECULES TALK TO EACH OTHER? 2323 01:24:39,941 --> 01:24:42,410 AND WHAT CAN WE LEARN ABOUT OUR 2324 01:24:42,477 --> 01:24:43,244 DISEASE WITH THAT? 2325 01:24:43,311 --> 01:24:46,247 AND LASTLY, I WOULD BE REMISS BY 2326 01:24:46,314 --> 01:24:48,917 NOT MENTIONING THAT THIS AMAZING 2327 01:24:48,983 --> 01:24:50,151 COLLABORATION, ANOTHER AMAZING 2328 01:24:50,218 --> 01:24:53,555 COLLABORATION FROM SO MANY 2329 01:24:53,621 --> 01:24:55,089 PEOPLE HERE BETWEEN NIAMS, AND 2330 01:24:55,156 --> 01:24:57,559 WE ARE ABLE TO DO WHOLE GENOME 2331 01:24:57,625 --> 01:24:59,461 SEQUENCING ON OUR LUPUS PATIENTS 2332 01:24:59,527 --> 01:25:02,130 AND WE ARE FINDING VARIANTS IN 2333 01:25:02,197 --> 01:25:04,199 THE JACK STAT PATHWAY IN SOME OF 2334 01:25:04,265 --> 01:25:05,533 OUR PATIENTS, WHAT THIS MEAN 2335 01:25:05,600 --> 01:25:09,337 SYSTEM PERHAPS WE MAY BE ABLE TO 2336 01:25:09,404 --> 01:25:10,538 IDENTIFY PATIENTS WHO WOULD 2337 01:25:10,605 --> 01:25:11,906 RESPOND BETTER TO THESE TARGETED 2338 01:25:11,973 --> 01:25:12,807 THERAPIES THAT WE HAVE. 2339 01:25:12,874 --> 01:25:17,545 AND THE GOAL OF THE IDEA HERE IS 2340 01:25:17,612 --> 01:25:22,750 EARLY IDENT IBZ OF LUPUS SO WE 2341 01:25:22,817 --> 01:25:24,552 CAN ACT SOONER AS WELL AS 2342 01:25:24,619 --> 01:25:25,253 DEVELOPING TARGETED THERAPY FOR 2343 01:25:25,320 --> 01:25:26,454 ALL OUR PATIENTS AND WITH WITH 2344 01:25:26,521 --> 01:25:28,389 THAT I WILL LIKE TO THANK YOU 2345 01:25:28,456 --> 01:25:29,524 FOR YOUR ATTENTION. 2346 01:25:29,591 --> 01:25:39,801 [ APPLAUSE ] 2347 01:25:53,114 --> 01:25:54,349 >> PLEASE WELCOME OUR NEXT 2348 01:25:54,415 --> 01:25:54,582 SPEAKER. 2349 01:25:54,649 --> 01:25:56,084 >> THANK YOU SO MUCH AND THANK 2350 01:25:56,150 --> 01:25:58,953 YOU FOR THE INVITATION TO SPEAK 2351 01:25:59,020 --> 01:26:00,455 TODAY SO I HAVE THE PLEASURE OF 2352 01:26:00,522 --> 01:26:02,123 SERVING AS THE VICE PRESIDENT OF 2353 01:26:02,190 --> 01:26:03,591 RESEARCH AT THE LUPUS FOUNDATION 2354 01:26:03,658 --> 01:26:05,193 OF AMERICA AND TODAY I WILL TALK 2355 01:26:05,260 --> 01:26:06,060 ABOUT HEALTH DISPARITIES AND 2356 01:26:06,127 --> 01:26:08,496 LUPUS IN THE ROLE OF SOCIAL 2357 01:26:08,563 --> 01:26:09,197 DETERMINANTS OF HEALTH. 2358 01:26:09,264 --> 01:26:11,366 THESE ARE MY DISCLOSURES, AGAIN, 2359 01:26:11,432 --> 01:26:13,701 THE OBJECTIVES FOR TODAY ARE 2360 01:26:13,768 --> 01:26:16,271 HERE AND SO WE KNOW THERE'S BEEN 2361 01:26:16,337 --> 01:26:18,006 SOME CONTROVERSY AS RELATES TO 2362 01:26:18,072 --> 01:26:19,440 THE EPIDEMIOLOGY OF LUPUS BUT 2363 01:26:19,507 --> 01:26:21,409 BASED ON THE LATEST DATA ISSUE 2364 01:26:21,476 --> 01:26:23,778 THE CDC SAID THAT ABOUT 200,000 2365 01:26:23,845 --> 01:26:24,779 PEOPLE WITHIN THE U.S. 2366 01:26:24,846 --> 01:26:27,282 POPULATION ARE LIVING WITH 2367 01:26:27,348 --> 01:26:28,216 SYSTEMIC LUPUS, THERE ARE 2368 01:26:28,283 --> 01:26:30,418 SEVERAL STUDIES THAT MIGHT 2369 01:26:30,485 --> 01:26:31,152 SUGGEST OTHERWISE BUT REGARLESS 2370 01:26:31,219 --> 01:26:34,122 WE KNOW THAT THERE IS A HIGHER 2371 01:26:34,188 --> 01:26:38,293 PREVALENCE OF LUPUS IN CERTAIN 2372 01:26:38,359 --> 01:26:39,794 POPULATIONS SPECIFICALLY IN 2373 01:26:39,861 --> 01:26:41,563 AMERICAN INDIAN AND ALASKA 2374 01:26:41,629 --> 01:26:43,765 NATIVE POPULATIONS AS WELL AS 2375 01:26:43,831 --> 01:26:45,400 HISPANIC POPULATIONS THERE'S 2-3 2376 01:26:45,466 --> 01:26:49,137 TIMES GREATER USE 2377 01:26:49,203 --> 01:26:50,972 PREVENTIVEALATION, AND OTHERS 2378 01:26:51,039 --> 01:26:51,940 TODAY THAT MINORITIES TOAPPED 2379 01:26:52,006 --> 01:26:53,474 HAVE A HIGHER BURDEN OF LUPUS 2380 01:26:53,541 --> 01:26:54,809 AND MORE SEVERE DISEASE, BUT WE 2381 01:26:54,876 --> 01:27:00,081 REALLY DON'T KNOW WHY THAT 2382 01:27:00,148 --> 01:27:00,315 OCCURS. 2383 01:27:00,381 --> 01:27:01,382 AND JUDGE UOF THE TO TAKE A 2384 01:27:01,449 --> 01:27:03,151 DEEPER DIVE INTO THAT, WHEN 2385 01:27:03,217 --> 01:27:05,119 LOOKING AT LUPUS NEPHRITIS, WE 2386 01:27:05,186 --> 01:27:09,557 KNOW THAT AMONG U.S. MEDICAID 2387 01:27:09,624 --> 01:27:10,959 RECIPIENTS LEAPUS NEPHRITIS IS 4 2388 01:27:11,025 --> 01:27:13,795 TIMES MORE COMMON IN BLACK THAN 2389 01:27:13,861 --> 01:27:15,830 WHITE PEOPLE LIVING WITH LUPUS, 2390 01:27:15,897 --> 01:27:18,199 HISPANIC PATIENTS IN THE 2391 01:27:18,266 --> 01:27:20,101 CALIFORNIA REGISTRY WERE SHOWN 2392 01:27:20,168 --> 01:27:23,671 TO HAVE 3.5 HIGHER FOLD KIDNEY 2393 01:27:23,738 --> 01:27:24,405 INVOLVEMENT COMPARE WIDE WHITE 2394 01:27:24,472 --> 01:27:26,341 PATIENTS AND IN THE GEORGIA 2395 01:27:26,407 --> 01:27:27,976 LUPUS REG TREE, NEWLY DIAGNOSED 2396 01:27:28,042 --> 01:27:30,178 BLACK PATIENTS HAVE A HIGHER 2397 01:27:30,244 --> 01:27:31,479 INSDEN OF DEVELOPING END STAGE 2398 01:27:31,546 --> 01:27:35,350 RENAL DEC THAN WHITE PATIENTS. 2399 01:27:35,416 --> 01:27:37,452 AND OVER ALL END STAGE RENAL 2400 01:27:37,518 --> 01:27:39,153 DISEASE BECAUSE OF LUPUS 2401 01:27:39,220 --> 01:27:40,922 NEPHRITIS HAS BEEN MUCH GREATER 2402 01:27:40,989 --> 01:27:42,590 IN BLACK, AMERICAN INDIAN, 2403 01:27:42,657 --> 01:27:45,860 ALASKAINATE AND I HAVE HIS 2404 01:27:45,927 --> 01:27:47,028 HISPANIC POPULATION COMPARED TO 2405 01:27:47,095 --> 01:27:48,529 WHITE AND ASIAN POPULATIONS. 2406 01:27:48,596 --> 01:27:49,497 IN ADDITION TO THAT WHEN WE 2407 01:27:49,564 --> 01:27:59,907 ELECTRIC AT OVER AWE 2408 01:28:08,249 --> 01:28:09,517 TRANSPLANTATION, BLACK HISPANIC 2409 01:28:09,584 --> 01:28:12,153 AND MEDICAID PATIENTS WITH END 2410 01:28:12,220 --> 01:28:13,221 STAGE RENAL DISEASE ARE LESS 2411 01:28:13,287 --> 01:28:15,890 LIKELY TO BE PLACED ON A KIDNEY 2412 01:28:15,957 --> 01:28:17,392 TRANSPLANT WAIT LIST, SO THAT'S 2413 01:28:17,458 --> 01:28:20,395 NOT JUST ALL FOR LUPUS, THAT'S 2414 01:28:20,461 --> 01:28:21,429 ALL STAGE RENAL DISEASE AND SO 2415 01:28:21,496 --> 01:28:23,765 WHEN WE LOOK AT PARAMETERS AND 2416 01:28:23,831 --> 01:28:27,135 DATA AS IT RELATES TO GET RENAL 2417 01:28:27,201 --> 01:28:29,303 TRANSPLANTATION WE LOOK AT 2418 01:28:29,370 --> 01:28:30,605 MEDICAID DATA AND WHAT IT SHOWED 2419 01:28:30,672 --> 01:28:32,507 WAS WHEN WE THINK ABOUT 2420 01:28:32,573 --> 01:28:33,841 INCOMPLETE EVALUATIONS AND WHO'S 2421 01:28:33,908 --> 01:28:35,443 BEING EVALUATED FOR RENAL 2422 01:28:35,510 --> 01:28:36,911 TRANSPLANT ISSUES THE 2423 01:28:36,978 --> 01:28:37,645 DIFFERENCES ARE STRIKING BETWEEN 2424 01:28:37,712 --> 01:28:42,717 BLACK AND WHITE POPULATIONS IN 2425 01:28:42,784 --> 01:28:44,819 ADDITION TO THAT, THERE'S A 2426 01:28:44,886 --> 01:28:45,853 LOWER POPULATION OF REFERRALS 2427 01:28:45,920 --> 01:28:47,755 AND AS WELL AS PATIENTS ON THE 2428 01:28:47,822 --> 01:28:49,490 TRANSPLANT LIST AND THERE'S A 2429 01:28:49,557 --> 01:28:52,960 HUGE DIFFERENCE IN WHO'S 2430 01:28:53,027 --> 01:28:54,629 ACTUALLY ABLE TO UNDERGO RENAL 2431 01:28:54,696 --> 01:28:55,596 TRANSPLABTAATION IN BLACK AND 2432 01:28:55,663 --> 01:28:56,898 WHITE POPULATIONS SO THIS IS A 2433 01:28:56,964 --> 01:28:59,267 HUGE ISSUE WITH YOU KNOW MANY 2434 01:28:59,333 --> 01:29:00,668 DIFFERENT CAUSES THAT WE CAN'T 2435 01:29:00,735 --> 01:29:11,179 GET IN TODAY DUE TO TIME. 2436 01:29:16,217 --> 01:29:17,151 THE MOST SHOCKING INFORMATION IS 2437 01:29:17,218 --> 01:29:22,356 LOOKING AT DEATH RATES, SO WE 2438 01:29:22,423 --> 01:29:24,559 SEE THAT BLACKS ARE 4 TIMES MORE 2439 01:29:24,625 --> 01:29:25,993 LIKELY TO DIE FROM LUPUS THAN 2440 01:29:26,060 --> 01:29:28,162 WHITES AND WE ALSO KNOW THAT 2441 01:29:28,229 --> 01:29:30,131 LUPUS IS A TOP FIFTH OR SIXTH 2442 01:29:30,198 --> 01:29:31,699 CAUSE OF DEATH IN BLACK AND 2443 01:29:31,766 --> 01:29:34,268 HISPANIC POPULATIONS WHO ARE 2444 01:29:34,335 --> 01:29:36,704 AGES 15-44 AND IN ADDITION TO 2445 01:29:36,771 --> 01:29:39,107 THAT THE GEORGIA LUPUS REGISTRY 2446 01:29:39,173 --> 01:29:41,175 HAS SHOWN THAT BLACK WOMEN 2447 01:29:41,242 --> 01:29:44,145 LIVING WITH LUPUS DIE 13 YEARS 2448 01:29:44,212 --> 01:29:45,079 EARLIER THAN WHITE WOMEN LIVING 2449 01:29:45,146 --> 01:29:46,948 WITH THE SAME DEC EMPLOY I 2450 01:29:47,014 --> 01:29:51,185 SUBMIT TO YOU THAT HOUSTON OR 2451 01:29:51,252 --> 01:29:52,720 NIH, WE HAVE A PROBLEM. 2452 01:29:52,787 --> 01:29:54,122 SO WHEN WE THINK ABOUT SOLVING 2453 01:29:54,188 --> 01:29:55,923 THIS ISSUE, THE LUPUS FOUNDATION 2454 01:29:55,990 --> 01:29:57,959 OF AMERICA HAS COLLABORATED AND 2455 01:29:58,025 --> 01:29:59,727 FORMED A GROUP OF EXPERTS UNDER 2456 01:29:59,794 --> 01:30:01,929 THE GUISE OF A PROJECT CALLED 2457 01:30:01,996 --> 01:30:03,231 LUPUS AIM WHERE WE'RE REALLY 2458 01:30:03,297 --> 01:30:05,967 STUDYING THIS OUT AND LOOKING AT 2459 01:30:06,033 --> 01:30:07,135 HOW WE MIGHT PUT FORTH A 2460 01:30:07,201 --> 01:30:08,536 SOLUTION TO THE COMMUNITY TO 2461 01:30:08,603 --> 01:30:09,570 HELP SOLVE THIS PROBLEM. 2462 01:30:09,637 --> 01:30:10,805 SO THE FIRST THING WE HAD TO DO 2463 01:30:10,872 --> 01:30:12,006 WAS DEVELOP A FRAMEWORK IN WHICH 2464 01:30:12,073 --> 01:30:14,108 TO LOOK AT THIS AND SO WE 2465 01:30:14,175 --> 01:30:16,110 ADAPTED A FRAMEWORK THAT WAS 2466 01:30:16,177 --> 01:30:17,879 ORIGINALLY DEVELOPED BY THE 2467 01:30:17,945 --> 01:30:18,546 WORLD HEALTH ORGANIZATION. 2468 01:30:18,613 --> 01:30:20,348 AND SO WHEN WE THINK ABOUT THIS 2469 01:30:20,414 --> 01:30:30,892 ISSUE, WE LOOK AT STRUCTURAL 2470 01:30:37,899 --> 01:30:38,800 DETERMINANTS OF HEALTH, I WANT 2471 01:30:38,866 --> 01:30:40,802 TO HEIGHT LIGHT THAT RACIAL 2472 01:30:40,868 --> 01:30:41,502 DISCRIMINATION AND REALLY HUGE 2473 01:30:41,569 --> 01:30:43,271 FOR THOSE WHO ARE MARGINALIZED 2474 01:30:43,337 --> 01:30:44,205 IN COMMUNITIES WITHIN THE U.S. 2475 01:30:44,272 --> 01:30:47,208 AND IT HAS BEEN SHOWN THERE ARE 2476 01:30:47,275 --> 01:30:48,042 LINKAGES BETWEEN RACISM AND 2477 01:30:48,109 --> 01:30:51,312 HEALTH OUTCOMES WITHIN THE 2478 01:30:51,379 --> 01:30:52,947 UNITED STATES EMPLOY STUDY VS 2479 01:30:53,014 --> 01:30:54,649 SHOWN THAT RACISM ADVERSELY 2480 01:30:54,715 --> 01:30:56,350 IMPACTS LUPUS ACTIVITY ASK ORGAN 2481 01:30:56,417 --> 01:31:02,523 DAMAGE IN GEORGIA IN WOMEN WITH 2482 01:31:02,590 --> 01:31:03,491 LUPUS AND ANTICIPATORY RACISM 2483 01:31:03,558 --> 01:31:05,593 THAT YOU THINK YOU WILL 2484 01:31:05,660 --> 01:31:06,527 ENCOUNTER, JUST ANTICIPATING IT 2485 01:31:06,594 --> 01:31:11,265 HAS BEEN LINKED TO GREATER LUPUS 2486 01:31:11,332 --> 01:31:12,366 DISEASE ACTIVITY AS WELL. 2487 01:31:12,433 --> 01:31:14,735 IN ADDITION TO THAT AND I 2488 01:31:14,802 --> 01:31:16,270 APOLOGIZE BECAUSE THIS IS NOT 2489 01:31:16,337 --> 01:31:18,139 SHOWING UP APPROPRIATELY ON 2490 01:31:18,206 --> 01:31:20,308 SCREEN BUT ECONOMIC INSTABILITY 2491 01:31:20,374 --> 01:31:23,211 IS ALSO LINKED TO RACIAL ETHNIC 2492 01:31:23,277 --> 01:31:24,178 DISPARITIES, NO SURPRISE THERE, 2493 01:31:24,245 --> 01:31:27,782 RIGHT IN SO WE KNOW THAT LOWER 2494 01:31:27,849 --> 01:31:29,016 SOCIOECONOMIC STATUS OR 2495 01:31:29,083 --> 01:31:30,418 FUNCTIONING OR HIGHY DEPRESSION 2496 01:31:30,484 --> 01:31:32,086 RATES IN LUPUS, THE GOAL STUDY 2497 01:31:32,153 --> 01:31:34,522 SHOWED THAT LUPUS PATIENTS FOR 2498 01:31:34,589 --> 01:31:37,158 MINORITY GROUPS WITH THE LOWER 2499 01:31:37,225 --> 01:31:38,326 POVERTY INCOME RATIO FOR 2500 01:31:38,392 --> 01:31:39,827 PHYSICAL HEALTH AND BLACK PEOPLE 2501 01:31:39,894 --> 01:31:43,531 WITH LUPUS ARE TWICE AS LIKELY 2502 01:31:43,598 --> 01:31:45,466 TO EXPERIENCE JOB LOSS COMPARED 2503 01:31:45,533 --> 01:31:47,268 TO WHITES WHICH CAN LEAD TO 2504 01:31:47,335 --> 01:31:48,636 ECONOMIC INSTABILITY AND AS WELL 2505 01:31:48,703 --> 01:31:53,074 AS POVERTY AND STUDY VS ALSO 2506 01:31:53,140 --> 01:31:55,810 SHOWN THAT POVERTY INCREASES 2507 01:31:55,877 --> 01:31:59,480 DAMAGE ACCUMULATION IN SLE, 2508 01:31:59,547 --> 01:32:00,915 IRRESPECTIVE OF RACE/ETHNICITY. 2509 01:32:00,982 --> 01:32:01,749 IF YOU TURN YOUR ATTENTION TO 2510 01:32:01,816 --> 01:32:04,952 THE GRAPH ON THE RIGHT, THIS 2511 01:32:05,019 --> 01:32:06,153 SHOWS DIFFERENCES IN POPERTY 2512 01:32:06,220 --> 01:32:07,922 RATES IN U.S. 2513 01:32:07,989 --> 01:32:09,457 SO BASED ON THAT WE KNOW THE 2514 01:32:09,523 --> 01:32:12,026 NUMBER OF PEOPLE LIVING IN 2515 01:32:12,093 --> 01:32:13,961 POVERTY HAS DRASTICALLY DECLINED 2516 01:32:14,028 --> 01:32:15,029 BUT BLACK PEOPLE STILL TEND TO 2517 01:32:15,096 --> 01:32:17,298 HAVE THE HIGHEST RATES OF 2518 01:32:17,365 --> 01:32:19,166 POVERTY AND THIS IS LIKELY 1 2519 01:32:19,233 --> 01:32:19,867 CONTRIBUTOR TO DISPARITIES THAT 2520 01:32:19,934 --> 01:32:22,203 WE SEE IN THE U.S. 2521 01:32:22,270 --> 01:32:26,807 IN ADDITION TO THAT, WHEN WE 2522 01:32:26,874 --> 01:32:28,109 LOOK AT OVERALL NET WORTH WITHIN 2523 01:32:28,175 --> 01:32:32,747 THE UNITED STATES, WE SEE THAT 2524 01:32:32,813 --> 01:32:34,382 THE OTHER NONHISPANIC GROUP IN 2525 01:32:34,448 --> 01:32:37,585 RED HERE, AND I DON'T KNOW WHERE 2526 01:32:37,652 --> 01:32:39,420 THE POINTER IS BUT TYPICALLY 2527 01:32:39,487 --> 01:32:43,557 WHEN WE SEE THAT IN THE LITTURE 2528 01:32:43,624 --> 01:32:45,159 THAT'S THE POPULATION SO THAT 2529 01:32:45,226 --> 01:32:45,993 FAR EBS SEEDS EVERYONE ELSE 2530 01:32:46,060 --> 01:32:47,495 WITHIN THE UNITED STATES AND THE 2531 01:32:47,561 --> 01:32:50,264 BLUE LINE IS WHITES, THE GREEN 2532 01:32:50,331 --> 01:32:53,467 LINE IS HISPANIC LATINO 2533 01:32:53,534 --> 01:32:54,969 POPULATIONS AND AGAIN BLACK 2534 01:32:55,036 --> 01:32:56,037 POPULATIONS IS IN ORANGE. 2535 01:32:56,103 --> 01:33:01,442 AND THEN WHEN WE LOOK AT THE 2536 01:33:01,509 --> 01:33:02,576 OVERALL WELT EQUALITY COENTIOUS 2537 01:33:02,643 --> 01:33:04,145 FICIENT HERE WHAT WE SEE IS THAT 2538 01:33:04,211 --> 01:33:08,115 TYPICALLY IF THERE WERE SIMILAR 2539 01:33:08,182 --> 01:33:09,083 INCOMES ACROSS DIFFERENT 2540 01:33:09,150 --> 01:33:10,017 POPULATIONS THAT LINE WOULD BE 2541 01:33:10,084 --> 01:33:12,687 FLAT BUT HERE WE SEE THAT IT HAS 2542 01:33:12,753 --> 01:33:15,256 CONSISTENTLY GONE UP OVER THE 2543 01:33:15,323 --> 01:33:17,091 YEARS FROM 1989 TO 2019, AND SO 2544 01:33:17,158 --> 01:33:19,060 THIS TELLS US THAT THERE'S A 2545 01:33:19,126 --> 01:33:21,462 HUGE WEALTH GAP IN THE UNITED 2546 01:33:21,529 --> 01:33:23,531 STATES WHERE ABOUT .1% OF THE 2547 01:33:23,597 --> 01:33:27,234 POPULATION OWNS ABOUT 90% OF THE 2548 01:33:27,301 --> 01:33:30,137 WEALTH THAT THE REST OF THE 2549 01:33:30,204 --> 01:33:30,771 POPULATION HAS. 2550 01:33:30,838 --> 01:33:33,107 IN ADDITION TO THAT WE KNOW THAT 2551 01:33:33,174 --> 01:33:34,375 PLACE MATTERS SO PEOPLE WHO LIVE 2552 01:33:34,442 --> 01:33:39,146 IN AREAS WHERE THERE ARE HIGH 2553 01:33:39,213 --> 01:33:40,648 LEVELS OF POVERTY TEND TO HAVE 2554 01:33:40,715 --> 01:33:42,383 POOR OUTCOMES AND THERE IS TRUE 2555 01:33:42,450 --> 01:33:43,818 FOR LUPUS, THERE ARE STUDIES 2556 01:33:43,884 --> 01:33:50,691 DONE BY ED YELLEN THAT HAVE 2557 01:33:50,758 --> 01:33:52,426 SHOWN THAT PEOPLE WHO 2558 01:33:52,493 --> 01:33:53,828 [INDISCERNIBLE] LUPUS AND HAVE 2559 01:33:53,894 --> 01:33:56,464 LESS WORSENING OF THEIR DEC AS 2560 01:33:56,530 --> 01:33:57,331 THEY EXIT POVERTY SO, THIS IS 2561 01:33:57,398 --> 01:33:58,299 IMPORTANT TO THINK ABOUT WHEN WE 2562 01:33:58,366 --> 01:34:02,269 THINK ABOUT WAYS TO ELIMINATE 2563 01:34:02,336 --> 01:34:02,737 HEGHT DISPARITIES. 2564 01:34:02,803 --> 01:34:03,871 IN ARK DITION TO THAT WE KNOW 2565 01:34:03,938 --> 01:34:05,940 THERE ARE HUGE ISSUES AROUND 2566 01:34:06,007 --> 01:34:06,874 HEALTHCARE ACCESS AND QUALITY AS 2567 01:34:06,941 --> 01:34:08,943 WELL AS YOU KNOW ISSUES AROUND 2568 01:34:09,010 --> 01:34:12,947 BEING ABLE TO AFFORD AND YOU 2569 01:34:13,014 --> 01:34:15,416 KNOW UTILIZE THE HEALTHCARE 2570 01:34:15,483 --> 01:34:19,920 SYSTEM IN AN INADEQUATE WAY, LOW 2571 01:34:19,987 --> 01:34:20,855 SOCIOECONOMIC STATUS IS 2572 01:34:20,921 --> 01:34:22,056 ASSOCIATE WIDE HIGHER OVERALL 2573 01:34:22,123 --> 01:34:23,357 HEALTHCARE COSTS, THERE IS 2574 01:34:23,424 --> 01:34:24,258 VARIABILITY IN HEALTHCARE COST 2575 01:34:24,325 --> 01:34:26,027 DEPENDING ON THE TYPE OF 2576 01:34:26,093 --> 01:34:28,229 DEMOCRACY THE PERSON HAS 2577 01:34:28,295 --> 01:34:31,332 AND--DIAGNOSE THE PERSON HAS AND 2578 01:34:31,399 --> 01:34:33,200 INSURANCE THEY HAVE, TOTAL COSTS 2579 01:34:33,267 --> 01:34:34,568 ARE NOTABLILY HIGHER IN MAID 2580 01:34:34,635 --> 01:34:36,137 CADE AND PATES WITH LUPUS ARE 2581 01:34:36,203 --> 01:34:39,340 TWICE AS LIKELY TO REPORT COST 2582 01:34:39,407 --> 01:34:39,940 RELATED PRESCRIPTION 2583 01:34:40,007 --> 01:34:41,809 NONADHERENCE AS A STRATEGY TO 2584 01:34:41,876 --> 01:34:43,444 ECONOMIZE SO THEY'RE TRYING TO 2585 01:34:43,511 --> 01:34:45,713 SAVE MONEY BECAUSE THEIR 2586 01:34:45,780 --> 01:34:47,114 MEDICATIONS COST SO MUCH. 2587 01:34:47,181 --> 01:34:48,916 STUDIES HAVE ALSO DEMONSTRATE 2588 01:34:48,983 --> 01:34:51,252 THAD THOSE WITH LUPUS NEPHRITIS 2589 01:34:51,318 --> 01:34:52,720 ESPECIALLY FROM THE ETHNIC 2590 01:34:52,787 --> 01:34:56,123 MINORITY GROUPS ARE MORE LIKELY 2591 01:34:56,190 --> 01:34:57,425 TO RECEIVE INADEQUATE END STAGE 2592 01:34:57,491 --> 01:34:58,826 RENAL DEC WHICH COULD 2593 01:34:58,893 --> 01:35:00,961 POTENTIALLY LEAD TO WORSENING 2594 01:35:01,028 --> 01:35:01,228 OUTCOMES. 2595 01:35:01,295 --> 01:35:06,934 AND AGAIN, THERE ARE ISSUES 2596 01:35:07,001 --> 01:35:08,002 AROUND ACCESSIBILITY TO CARE AS 2597 01:35:08,069 --> 01:35:08,235 WELL. 2598 01:35:08,302 --> 01:35:09,170 AND OTHERS HAVE ALREADY 2599 01:35:09,236 --> 01:35:10,704 MENTIONED THIS BUT LUPUS 2600 01:35:10,771 --> 01:35:12,006 CLINICAL TRIAL PARTICIPATION IS 2601 01:35:12,073 --> 01:35:14,141 A HUGE ISSUE. 2602 01:35:14,208 --> 01:35:15,876 SIMPLY BECAUSE IF THERE ARE 2603 01:35:15,943 --> 01:35:18,012 MEDICATIONS BEING DEVELOPED THAT 2604 01:35:18,079 --> 01:35:19,980 DON'T NECESSARILY TREAT ALL OF 2605 01:35:20,047 --> 01:35:21,215 THE POPULATION, THEN WE'LL 2606 01:35:21,282 --> 01:35:22,716 CONTINUE TO SEE HEALTH 2607 01:35:22,783 --> 01:35:24,218 DISPARITIES AND I WON'T GO 2608 01:35:24,285 --> 01:35:25,086 THROUGH THIS BECAUSE IT'S 2609 01:35:25,152 --> 01:35:26,353 ALREADY BEEN MENTIONED BUT THE 2610 01:35:26,420 --> 01:35:29,290 POINT IS, WE NEED MORE DIVERSITY 2611 01:35:29,356 --> 01:35:31,125 IN CLINICAL TRIALS IN ORDER TO 2612 01:35:31,192 --> 01:35:41,068 LEVEL THE PLAYING FIELD. 2613 01:35:41,135 --> 01:35:42,470 SO ANYTHING BACK TO THIS 2614 01:35:42,536 --> 01:35:43,437 FRAMEWORK, AND LOOKING AT 2615 01:35:43,504 --> 01:35:45,406 ADDRESSING THESE ISSUES WE LOOK 2616 01:35:45,473 --> 01:35:46,340 AT SOCIAL DETERMINANTS OF HEALTH 2617 01:35:46,407 --> 01:35:47,842 AND SO WE PULL TOGETHER A TEAM 2618 01:35:47,908 --> 01:35:50,611 OF PEOPLE WHO HAVE EXPERTISE IN 2619 01:35:50,678 --> 01:35:51,912 THIS AREA, WE ALSO INTERVIEWED 2620 01:35:51,979 --> 01:35:53,881 PATIENTS WITH LUPUS AS WELL AS A 2621 01:35:53,948 --> 01:35:55,282 LEADERSHIP TEAM WITHIN THE LUPUS 2622 01:35:55,349 --> 01:35:58,486 FOUNDATION OF AMERICA TO REALLY 2623 01:35:58,552 --> 01:35:59,120 UNDERSTAND THEIR OPINIONS ABOUT 2624 01:35:59,186 --> 01:36:01,322 WHAT NEEDS TO BE DONE IN ORDER 2625 01:36:01,388 --> 01:36:02,490 TO ELIMINATE HEALTH DISPARITIES 2626 01:36:02,556 --> 01:36:06,093 IN LUPUS AND SO WE ENGAGE IN A 2627 01:36:06,160 --> 01:36:07,394 NUMBER OF DELPH I EXERCISES TO 2628 01:36:07,461 --> 01:36:08,395 GET AT THE CRUX OF THIS ISSUE 2629 01:36:08,462 --> 01:36:11,065 AND THIS IS JUST A SAMPLE OF THE 2630 01:36:11,132 --> 01:36:11,999 DATA WE COLLECTED THIS FAR BUT 2631 01:36:12,066 --> 01:36:13,400 THE MAIN THING I WANT TO POINT 2632 01:36:13,467 --> 01:36:15,402 OUT HERE IS THAT'S FIZZLED UP TO 2633 01:36:15,469 --> 01:36:19,874 THE TOP IS FINANCIAL RESOURCES. 2634 01:36:19,940 --> 01:36:21,041 BOTH PATIENTS, LEADERSHIP WITHIN 2635 01:36:21,108 --> 01:36:22,510 THE LFA AND EXPERTS WITHIN THE 2636 01:36:22,576 --> 01:36:24,912 FIELD AGREE THAT YOU KNOW, A BIG 2637 01:36:24,979 --> 01:36:27,181 PIECE OF THE PROBLEM IS FINANCE 2638 01:36:27,248 --> 01:36:29,183 OR A LACK THEREOF. 2639 01:36:29,250 --> 01:36:30,818 IN ADDITION TO THAT, LOOKING AT 2640 01:36:30,885 --> 01:36:32,219 THIS ISSUE MORE BROADLY, 2641 01:36:32,286 --> 01:36:33,387 THINKING ABOUT STRUCTURALLY 2642 01:36:33,454 --> 01:36:34,121 YOUAL DETERMINE NABTS OF HEALTH 2643 01:36:34,188 --> 01:36:35,890 AND WHAT CAN BE DONE, POLICIES 2644 01:36:35,956 --> 01:36:37,791 HAVE TO CHANGE, RIGHT IN SO 2645 01:36:37,858 --> 01:36:39,660 POLICIES NEED TO BE CREATE THAD 2646 01:36:39,727 --> 01:36:40,928 ADDRESS ECONOMIC STABILITY AND 2647 01:36:40,995 --> 01:36:42,463 SOCIAL AND COMMUNITY CONTEXT, AS 2648 01:36:42,530 --> 01:36:45,166 WELL AS HEALTHCARE ACCESS AND 2649 01:36:45,232 --> 01:36:47,668 QUALITY AND ADDRESS ISSUES 2650 01:36:47,735 --> 01:36:50,838 AROUND NEIGHBORHOOD AND BUILD 2651 01:36:50,905 --> 01:36:51,138 ENVIRONMENT. 2652 01:36:51,205 --> 01:36:53,507 CAN WITH THAT I WOULD LIKE TO 2653 01:36:53,574 --> 01:36:55,142 THANK THE ORGANIZERS FOR THE 2654 01:36:55,209 --> 01:36:56,544 INVITATION AS WELL AS 2655 01:36:56,610 --> 01:36:57,478 CONTRIBUTORS FOR THE WORK WE'RE 2656 01:36:57,545 --> 01:36:58,712 DOING AND ALL THE PARTNERS WE 2657 01:36:58,779 --> 01:37:00,915 HAVE THAT FUND THE WORK WE DO AT 2658 01:37:00,981 --> 01:37:01,649 THE FOUNDATION AND WITH THAT I 2659 01:37:01,715 --> 01:37:04,018 WILL TAKE ANY QUESTIONS. 2660 01:37:04,084 --> 01:37:14,295 [ APPLAUSE ] 2661 01:37:20,568 --> 01:37:22,069 >> THANK YOU DR. BOWIE. 2662 01:37:22,136 --> 01:37:27,208 NEXT WE HAVE COMING UP ISOTOPA 2663 01:37:27,274 --> 01:37:29,210 BELLA OCHOA AND EMILY JONES WHO 2664 01:37:29,276 --> 01:37:30,444 ARE PATIENT COORDINATORS AND 2665 01:37:30,511 --> 01:37:34,782 THEY WILL BE INTERVIEWING MISS 2666 01:37:34,848 --> 01:37:35,816 MARIA ESPINOW. 2667 01:37:35,883 --> 01:37:46,427 PLEASE GIVE THEM A WARM WELCOME. 2668 01:38:27,468 --> 01:38:37,878 [SPEAKING FOREIGN LANGUAGE ] 2669 01:38:48,188 --> 01:38:49,189 >> WE SHARE EVERYTHING, WE SHARE 2670 01:38:49,256 --> 01:38:51,258 EVERYTHING IN THE OFFICE, SHE 2671 01:38:51,325 --> 01:38:53,360 SHARE THE ROLES, DUTIES, SHARE 2672 01:38:53,427 --> 01:39:01,135 THE PATIENTS, SO WHY NOT SHARE 2673 01:39:01,201 --> 01:39:01,935 THE MICROPHONE. 2674 01:39:02,002 --> 01:39:12,479 [SPEAKING FOREIGN LANGUAGE ] 2675 01:39:32,333 --> 01:39:33,300 >> TRANSLATOR: HI MARIA WE WERE 2676 01:39:33,367 --> 01:39:34,501 WONDERING IF YOU COULD TELL US 2677 01:39:34,568 --> 01:39:38,972 ABOUT YOUR DIAGNOSIS AND HOW 2678 01:39:39,039 --> 01:39:40,941 YOU'RE FEELING CURRENTLY. 2679 01:39:41,008 --> 01:39:42,109 >> [SPEAKING FOREIGN LANGUAGE ] 2680 01:39:42,176 --> 01:39:43,077 >> TRANSLATOR: THANK YOU FOR 2681 01:39:43,143 --> 01:39:47,047 INVITING ME AND HAVING ME HERE. 2682 01:39:47,114 --> 01:39:54,488 I WAS 2683 01:39:54,555 --> 01:39:55,155 >> [SPEAKING FOREIGN LANGUAGE ] 2684 01:39:55,222 --> 01:39:55,556 DIAGNOSED IN 2010. 2685 01:39:55,622 --> 01:39:56,323 >> [SPEAKING FOREIGN LANGUAGE ] 2686 01:39:56,390 --> 01:40:00,294 NCAN IT WAS BECAUSE I HAD 2687 01:40:00,361 --> 01:40:00,961 >> [SPEAKING FOREIGN LANGUAGE ] 2688 01:40:01,028 --> 01:40:01,095 A 2689 01:40:01,161 --> 01:40:01,762 DENTAL EMERGENCY. 2690 01:40:01,829 --> 01:40:03,864 >> [SPEAKING FOREIGN LANGUAGE ] 2691 01:40:03,931 --> 01:40:08,102 >> I WENT TO A 2692 01:40:08,168 --> 01:40:08,769 >> [SPEAKING FOREIGN LANGUAGE ] 2693 01:40:08,836 --> 01:40:09,136 CATHOLIC CHARITY 2694 01:40:09,203 --> 01:40:09,370 CLINIC. 2695 01:40:09,436 --> 01:40:12,206 >> [SPEAKING FOREIGN LANGUAGE ] 2696 01:40:12,272 --> 01:40:13,607 >> TRANSLATOR: AND THE DENTIST 2697 01:40:13,674 --> 01:40:17,010 NOTICED A MARK 2698 01:40:17,077 --> 01:40:17,678 >> [SPEAKING FOREIGN LANGUAGE ] 2699 01:40:17,745 --> 01:40:17,978 ON MY FACE. 2700 01:40:18,045 --> 01:40:19,279 >> [SPEAKING FOREIGN LANGUAGE ] 2701 01:40:19,346 --> 01:40:23,350 >> ASK HE ASKED ASKED ME IF I D 2702 01:40:23,417 --> 01:40:27,554 LUPUS AND I TOLD HIM THAT I DID 2703 01:40:27,621 --> 01:40:28,222 >> [SPEAKING FOREIGN LANGUAGE ] 2704 01:40:28,288 --> 01:40:28,489 NOT KNOW. 2705 01:40:28,555 --> 01:40:29,490 >> [SPEAKING FOREIGN LANGUAGE ] 2706 01:40:29,556 --> 01:40:33,761 NSO 2707 01:40:33,827 --> 01:40:34,428 >> TRANSLATOR: SO HE DIDN'T 2708 01:40:34,495 --> 01:40:36,897 WANT TO ATTEND ME AND HE CALLED 2709 01:40:36,964 --> 01:40:39,166 THE PRIMARY CARE PHYSICIAN AND 2710 01:40:39,233 --> 01:40:42,503 THEY TOOK 2711 01:40:42,569 --> 01:40:43,170 >> [SPEAKING FOREIGN LANGUAGE ] 2712 01:40:43,237 --> 01:40:43,504 A BLOOD DRAW. 2713 01:40:43,570 --> 01:40:45,806 >> [SPEAKING FOREIGN LANGUAGE ] 2714 01:40:45,873 --> 01:40:48,842 >> A MONTH LATER A GOT A PHONE 2715 01:40:48,909 --> 01:40:50,811 ALL LETTING ME KNOW THAT I 2716 01:40:50,878 --> 01:40:53,881 TESTED 2717 01:40:53,947 --> 01:40:54,548 >> [SPEAKING FOREIGN LANGUAGE ] 2718 01:40:54,615 --> 01:40:56,116 POSITIVE FOR LUPUS. 2719 01:40:56,183 --> 01:40:56,784 >> [SPEAKING FOREIGN LANGUAGE ] 2720 01:40:56,850 --> 01:40:57,418 >> AND THAT'S HOW I FOUND OUT 2721 01:40:57,484 --> 01:41:00,287 THAT I HAD A DISEASE THAT I KNEW 2722 01:41:00,354 --> 01:41:06,693 PRACTICALLY KNEW NOTHING 2723 01:41:06,760 --> 01:41:07,361 >> [SPEAKING FOREIGN LANGUAGE ] 2724 01:41:07,428 --> 01:41:07,561 ABOUT. 2725 01:41:07,628 --> 01:41:07,828 >> WOW. 2726 01:41:07,895 --> 01:41:12,266 >> [SPEAKING FOREIGN LANGUAGE ] 2727 01:41:12,332 --> 01:41:13,000 >> TRANSLATOR: NOT THE BEST 2728 01:41:13,066 --> 01:41:18,972 NEWS YOU 2729 01:41:19,039 --> 01:41:19,640 >> [SPEAKING FOREIGN LANGUAGE ] 2730 01:41:19,706 --> 01:41:20,007 WANT TO RECEIVE. 2731 01:41:20,073 --> 01:41:27,781 >> [SPEAKING FOREIGN LANGUAGE ] 2732 01:41:27,848 --> 01:41:29,216 >> TRANSLATOR: I WANTED TO ASK 2733 01:41:29,283 --> 01:41:30,517 WHAT MOTIVATED YOU TO 2734 01:41:30,584 --> 01:41:32,719 PARTICIPATE 2735 01:41:32,786 --> 01:41:33,387 >> [SPEAKING FOREIGN LANGUAGE ] 2736 01:41:33,454 --> 01:41:33,821 IN CLINICAL STUDIES? 2737 01:41:33,887 --> 01:41:37,424 >> [SPEAKING FOREIGN LANGUAGE ] 2738 01:41:37,491 --> 01:41:39,092 >> TRANSLATOR: WELL, FIRSTLY I 2739 01:41:39,159 --> 01:41:47,234 HAVE TO SAY HOW I GOT TO NIH. 2740 01:41:47,301 --> 01:41:50,504 THE CATHOLIC CHARITY CLINIC ARE 2741 01:41:50,571 --> 01:41:58,445 THE 1S WHO SPOKE TO 2742 01:41:58,512 --> 01:41:59,112 >> [SPEAKING FOREIGN LANGUAGE ] 2743 01:41:59,179 --> 01:41:59,346 ME ABOUT 2744 01:41:59,413 --> 01:41:59,513 NIH. 2745 01:41:59,580 --> 01:42:04,885 >> [SPEAKING FOREIGN LANGUAGE ] 2746 01:42:04,952 --> 01:42:06,286 >> TRANSLATOR: AND THANK GOT AT 2747 01:42:06,353 --> 01:42:07,921 THAT TIME NIH WAS LOOKING FOR 2748 01:42:07,988 --> 01:42:10,324 PATIENTS THAT WERE HISPANIC, 2749 01:42:10,390 --> 01:42:14,828 DIAGNOSED IF 2750 01:42:14,895 --> 01:42:15,496 >> [SPEAKING FOREIGN LANGUAGE ] 2751 01:42:15,562 --> 01:42:15,896 LUPUS AND FEMALE. 2752 01:42:15,963 --> 01:42:19,800 >> [SPEAKING FOREIGN LANGUAGE ] 2753 01:42:19,867 --> 01:42:20,634 >> TRANSLATOR: SO THEY WERE THE 2754 01:42:20,701 --> 01:42:22,669 1 WHO IS SUBMITTED MY CASE TO 2755 01:42:22,736 --> 01:42:26,607 NIH AND 2756 01:42:26,673 --> 01:42:27,274 >> [SPEAKING FOREIGN LANGUAGE ] 2757 01:42:27,341 --> 01:42:27,641 I WAS APPROVED. 2758 01:42:27,708 --> 01:42:29,710 >> [SPEAKING FOREIGN LANGUAGE ] 2759 01:42:29,776 --> 01:42:31,111 >> TRANSLATOR: AND I'VE BEEN A 2760 01:42:31,178 --> 01:42:38,418 PATIENT AT NIH SINCE THEN AND 2761 01:42:38,485 --> 01:42:41,688 THAT 2762 01:42:41,755 --> 01:42:42,356 >> [SPEAKING FOREIGN LANGUAGE ] 2763 01:42:42,422 --> 01:42:42,656 WAS IN 2010. 2764 01:42:42,723 --> 01:42:48,195 >> [SPEAKING FOREIGN LANGUAGE ] 2765 01:42:48,262 --> 01:42:50,030 >> TRANSLATOR: AT THE BEGINNING 2766 01:42:50,097 --> 01:42:53,433 I DIDN'T PARTICIPATE IN ANY 2767 01:42:53,500 --> 01:42:57,471 STUDIES BECAUSE MY DISEASE WAS 2768 01:42:57,538 --> 01:42:59,740 VERY--IT WASN'T DIAGNOSED FOR A 2769 01:42:59,806 --> 01:43:01,174 LONG TIME AND IT WAS REALLY 2770 01:43:01,241 --> 01:43:05,012 SEVERE AT 2771 01:43:05,078 --> 01:43:05,679 >> [SPEAKING FOREIGN LANGUAGE ] 2772 01:43:05,746 --> 01:43:05,946 THE TIME. 2773 01:43:06,013 --> 01:43:07,848 >> [SPEAKING FOREIGN LANGUAGE ] 2774 01:43:07,915 --> 01:43:09,483 >> TRANSLATOR: AND THE DOCTORS 2775 01:43:09,550 --> 01:43:14,588 AT NIH TOLD ME I COULD DIE AT 2776 01:43:14,655 --> 01:43:15,188 ANY MOMENT. 2777 01:43:15,255 --> 01:43:20,727 SO THEY GAVE ME A VERY 2778 01:43:20,794 --> 01:43:21,428 AGGRESSIVE TREATMENT. 2779 01:43:21,495 --> 01:43:27,968 WHEN I STARTED TO GET BETTER 2780 01:43:28,035 --> 01:43:30,103 THAT'S WHEN I WAS INVITED TO 2781 01:43:30,170 --> 01:43:33,173 PARTICIPATE IN 2782 01:43:33,240 --> 01:43:33,840 >> [SPEAKING FOREIGN LANGUAGE ] 2783 01:43:33,907 --> 01:43:34,141 THE CLINICAL 2784 01:43:34,207 --> 01:43:34,374 TRIALS. 2785 01:43:34,441 --> 01:43:45,018 >> [SPEAKING FOREIGN LANGUAGE ] 2786 01:43:50,757 --> 01:43:52,092 >> TRANSLATOR: DID YOU EVER 2787 01:43:52,159 --> 01:43:54,094 FEEL OBLIGATED OR WERE YOU 2788 01:43:54,161 --> 01:43:55,562 INFLUENCED TO PARTICIPATE IN ANY 2789 01:43:55,629 --> 01:43:57,164 OF THE CLINICAL TRIALS AND THE 2790 01:43:57,230 --> 01:43:59,132 RESPONSE WAS NO, I DID IT ON MY 2791 01:43:59,199 --> 01:44:05,539 OWN BECAUSE 2792 01:44:05,606 --> 01:44:06,206 >> [SPEAKING FOREIGN LANGUAGE ] 2793 01:44:06,273 --> 01:44:06,506 I WANTED TO. 2794 01:44:06,573 --> 01:44:17,150 >> [SPEAKING FOREIGN LANGUAGE ] 2795 01:44:19,052 --> 01:44:20,320 >> TRANSLATOR: THE BENEFIT OF 2796 01:44:20,387 --> 01:44:23,390 COMING TO NIH IS THAT YOU GET 2797 01:44:23,457 --> 01:44:24,224 EXPOSED TO OTHER MEDICAL TEAMS 2798 01:44:24,291 --> 01:44:25,726 THAT CAN HELP YOU WITH OTHER 2799 01:44:25,792 --> 01:44:35,802 ISSUES THAT MIGHT BE RELATED TO 2800 01:44:35,869 --> 01:44:36,370 LUPUS. 2801 01:44:36,436 --> 01:44:38,105 >> NO, NO, NO, WHAT I WANT TO 2802 01:44:38,171 --> 01:44:39,873 SAY IS THAT BECAUSE I 2803 01:44:39,940 --> 01:44:41,608 PARTICIPATED IN DIFFERENT 2804 01:44:41,675 --> 01:44:47,447 TRIALS, I WAS EXPOSED TO OTHER 2805 01:44:47,514 --> 01:44:53,587 TEAM MEDICAL SPECIALTIES THAT 2806 01:44:53,654 --> 01:44:54,087 IMPROVE MY HEALTH. 2807 01:44:54,154 --> 01:44:58,392 ONE EXAMPLE OF THAT, I MEAN, 2808 01:44:58,458 --> 01:45:08,935 [SPEAKING FOREIGN LANGUAGE ] 2809 01:45:18,812 --> 01:45:19,446 >> TRANSLATOR: AN EXAMPLE OF 2810 01:45:19,513 --> 01:45:20,981 THAT IS THAT I WAS HAVING A LOT 2811 01:45:21,048 --> 01:45:23,150 OF ISSUES WITH THE DETERIORATION 2812 01:45:23,216 --> 01:45:28,422 OF MUSCLE IN MY LEGS SO I WAS 2813 01:45:28,488 --> 01:45:29,289 CONNECTED WITH PHYSICAL THERAPY 2814 01:45:29,356 --> 01:45:30,590 AND THEY PROVIDED WITH INSOLES 2815 01:45:30,657 --> 01:45:32,225 FOR MY FEET AND IT HELPED A LOT 2816 01:45:32,292 --> 01:45:40,701 WITH THE PAIN I WAS HAVING IN MY 2817 01:45:40,767 --> 01:45:42,703 LEGS. 2818 01:45:42,769 --> 01:45:53,346 >> [SPEAKING FOREIGN LANGUAGE ] 2819 01:46:00,520 --> 01:46:01,855 >> TRANSLATOR: HOW HAS YOUR 2820 01:46:01,922 --> 01:46:08,729 EXPERIENCE BEEN HERE AT NIH BUT 2821 01:46:08,795 --> 01:46:10,530 IN ALL HONESTY. 2822 01:46:10,597 --> 01:46:11,264 >> OF COURSE! 2823 01:46:11,331 --> 01:46:21,541 [SPEAKING FOREIGN LANGUAGE ] 2824 01:46:21,608 --> 01:46:21,908 >> TRANSLATOR. 2825 01:46:21,975 --> 01:46:23,009 WELL, FIRSTLY THE PATIENT CARE 2826 01:46:23,076 --> 01:46:24,177 IS ALWAYS THE FIRST THING SO 2827 01:46:24,244 --> 01:46:31,451 IT'S A HUGE BENEFIT 2828 01:46:31,518 --> 01:46:32,119 >> [SPEAKING FOREIGN LANGUAGE ] 2829 01:46:32,185 --> 01:46:32,319 TO THE 2830 01:46:32,385 --> 01:46:32,586 PATIENTS. 2831 01:46:32,652 --> 01:46:34,888 >> [SPEAKING FOREIGN LANGUAGE ] 2832 01:46:34,955 --> 01:46:35,822 >> TRANSLATOR: BECAUSE WHEN YOU 2833 01:46:35,889 --> 01:46:36,990 HEAR THE WORD STUDY, YOU THINK 2834 01:46:37,057 --> 01:46:40,060 YOU WILL BE A LAB RAT AND THAT 2835 01:46:40,127 --> 01:46:48,101 HAS NOT 2836 01:46:48,168 --> 01:46:48,769 >> [SPEAKING FOREIGN LANGUAGE ] 2837 01:46:48,835 --> 01:46:49,202 BEEN MY EXPERIENCE. 2838 01:46:49,269 --> 01:46:51,438 >> [SPEAKING FOREIGN LANGUAGE ] 2839 01:46:51,505 --> 01:46:52,339 >> TRANSLATOR. 2840 01:46:52,405 --> 01:46:54,107 I REMEMBER AT 1 POINT I WAS 2841 01:46:54,174 --> 01:46:55,208 TAKING A PLACEBO AND A 2842 01:46:55,275 --> 01:46:56,576 MEDICATION THAT HAS SOMETHING TO 2843 01:46:56,643 --> 01:47:00,847 DO WITH THE VASCULAR SYSTEM AND 2844 01:47:00,914 --> 01:47:08,321 I STARTED 2845 01:47:08,388 --> 01:47:08,989 >> [SPEAKING FOREIGN LANGUAGE ] 2846 01:47:09,055 --> 01:47:09,356 TO GAIN WEIGHT. 2847 01:47:09,422 --> 01:47:18,331 >> [SPEAKING FOREIGN LANGUAGE ] 2848 01:47:18,398 --> 01:47:19,699 >> TRANSLATOR: AS SOON AS I 2849 01:47:19,766 --> 01:47:21,134 INFORMED THE TEAM ABOUT THAT, 2850 01:47:21,201 --> 01:47:22,402 MAY IMMEDIATELY STOPPED THE 2851 01:47:22,469 --> 01:47:26,706 MEDICATION SO I WOULD STOP WITH 2852 01:47:26,773 --> 01:47:27,374 >> [SPEAKING FOREIGN LANGUAGE ] 2853 01:47:27,440 --> 01:47:27,741 THE WEIGHT GAIN. 2854 01:47:27,808 --> 01:47:30,811 >> [SPEAKING FOREIGN LANGUAGE ] 2855 01:47:30,877 --> 01:47:31,878 >> TRANSLATOR: AND THAT SHOWED 2856 01:47:31,945 --> 01:47:33,713 ME THAT THEY CARED MORE ABOUT ME 2857 01:47:33,780 --> 01:47:39,085 AS A PERSON THAN 2858 01:47:39,152 --> 01:47:39,753 >> [SPEAKING FOREIGN LANGUAGE ] 2859 01:47:39,820 --> 01:47:40,020 THE STUDY. 2860 01:47:40,086 --> 01:47:47,994 >> [SPEAKING FOREIGN LANGUAGE ] 2861 01:47:48,061 --> 01:47:48,562 >> TRANSLATOR: IS THERE 2862 01:47:48,628 --> 01:47:49,529 ANYTHING ELSE THAT YOU WOULD 2863 01:47:49,596 --> 01:47:53,300 LIKE TO SHARE 2864 01:47:53,366 --> 01:47:53,967 >> [SPEAKING FOREIGN LANGUAGE ] 2865 01:47:54,034 --> 01:47:54,301 WITH EVERYONE? 2866 01:47:54,367 --> 01:47:58,705 >> [SPEAKING FOREIGN LANGUAGE ] 2867 01:47:58,772 --> 01:47:59,206 >> TRANSLATOR. 2868 01:47:59,272 --> 01:48:09,683 SO I HAVE A REALLY FUNNY 2869 01:48:14,754 --> 01:48:14,888 ANECDOTE. 2870 01:48:14,955 --> 01:48:20,660 NTRANSLATEOR TRANSLATE-- 2871 01:48:20,727 --> 01:48:22,128 >> TRANSLATOR: I PARTICIPATED 2872 01:48:22,195 --> 01:48:23,763 IN A CONFERENCE HERE, AND I WENT 2873 01:48:23,830 --> 01:48:25,599 TO THE RESTROOM IN THAT HOTEL 2874 01:48:25,665 --> 01:48:35,208 WHERE THE CONFERENCE WAS AND I 2875 01:48:35,275 --> 01:48:36,877 TOOK AN UNEXPECTED INVITER OR 2876 01:48:36,943 --> 01:48:44,484 PERSON WITH ME WHICH WAS A TICK. 2877 01:48:44,551 --> 01:48:53,226 I NOTICED IT AT HOME ONCE I GOT 2878 01:48:53,293 --> 01:48:53,560 BACK. 2879 01:48:53,627 --> 01:48:55,629 AND SINCE THAT TICK ALSO CAN 2880 01:48:55,695 --> 01:49:04,004 CAUSE LYME DISEASE, I GOT REALY 2881 01:49:04,070 --> 01:49:04,671 SCARED. 2882 01:49:04,738 --> 01:49:10,810 >> SO I CALLED THE TEAM AND I 2883 01:49:10,877 --> 01:49:11,478 >> [SPEAKING FOREIGN LANGUAGE ] 2884 01:49:11,544 --> 01:49:11,845 SPOKE WITH THEM. 2885 01:49:11,912 --> 01:49:15,582 >> [SPEAKING FOREIGN LANGUAGE ] 2886 01:49:15,649 --> 01:49:20,587 >> TRANSLATOR.: THIS IS THE LAT 2887 01:49:20,654 --> 01:49:25,725 THING I NEED IS LYME DISEASE, 2888 01:49:25,792 --> 01:49:31,998 BUT ALSO I WAS DIAGNOSED WITH 2889 01:49:32,065 --> 01:49:33,366 SOJGREN'S DISEASE, SO I FORCED 2890 01:49:33,433 --> 01:49:36,603 THE TEAM TO SEE ME AND REMOVE 2891 01:49:36,670 --> 01:49:37,070 THE TICK. 2892 01:49:37,137 --> 01:49:38,271 BUT THE FUNNY THING IS THAT THE 2893 01:49:38,338 --> 01:49:42,842 DAY THAT I 2894 01:49:42,909 --> 01:49:43,510 >> [SPEAKING FOREIGN LANGUAGE ] 2895 01:49:43,576 --> 01:49:43,843 CAME FOR THAT 2896 01:49:43,910 --> 01:49:52,652 >> [SPEAKING FOREIGN LANGUAGE ] 2897 01:49:52,719 --> 01:49:53,954 >> TRANSLATOR: THE DOCTOR THAT 2898 01:49:54,020 --> 01:49:54,955 SPECIALIZES AND STUDIES TICKS 2899 01:49:55,021 --> 01:50:00,660 JUST SO HAPPENED TO BE HERE THAT 2900 01:50:00,727 --> 01:50:01,261 DAY. 2901 01:50:01,328 --> 01:50:03,430 SO 5 DOCTORS IN THEIR ROBES AND 2902 01:50:03,496 --> 01:50:13,707 7 NURSES CAME TO SEE ME TO 2903 01:50:13,773 --> 01:50:14,274 REMOVE THE TICK. 2904 01:50:14,341 --> 01:50:21,348 AND WHEN THEY STUDIED IT, THAT 2905 01:50:21,414 --> 01:50:25,685 DOCTOR DID NOT KNOW THAT SPECIES 2906 01:50:25,752 --> 01:50:26,486 OF TICK. 2907 01:50:26,553 --> 01:50:31,324 SO I CONTRIBUTED WITH SCIENCE. 2908 01:50:31,391 --> 01:50:40,800 [ 2909 01:50:40,867 --> 01:50:41,468 >> [SPEAKING FOREIGN LANGUAGE ] 2910 01:50:41,534 --> 01:50:41,735 APPLAUSE ] 2911 01:50:41,801 --> 01:50:42,002 [LAUGHTER] 2912 01:50:42,068 --> 01:50:43,837 >> [SPEAKING FOREIGN LANGUAGE ] 2913 01:50:43,903 --> 01:50:44,771 >> TRANSLATOR: SHE SAID THERE'S 2914 01:50:44,838 --> 01:50:45,972 A TICK OUT THERE SOMEWHERE WITH 2915 01:50:46,039 --> 01:50:50,310 MY NAME ON IT. 2916 01:50:50,377 --> 01:50:57,150 ANY QUESTIONS IN QUESTIONS? 2917 01:50:57,217 --> 01:51:05,592 >> OKAY, THANK YOU VERY MUCH: 2918 01:51:05,658 --> 01:51:08,194 >> THANK YOU MISS MARIA ESPINALL 2919 01:51:08,261 --> 01:51:10,230 FOR SHARING YOUR STORY. 2920 01:51:10,296 --> 01:51:12,098 NEXT WE HAVE DR. JAMES 2921 01:51:12,165 --> 01:51:12,699 [INDISCERNIBLE] SENIOR 2922 01:51:12,766 --> 01:51:14,567 INVESTIGATOR AT NCI AND HE WILL 2923 01:51:14,634 --> 01:51:17,570 BE PRESENTING ON CAR T THERAPY 2924 01:51:17,637 --> 01:51:18,838 AND REFRACTORY LUPUS NEPHRITIS 2925 01:51:18,905 --> 01:51:20,774 WERE AT THE NIH. 2926 01:51:20,840 --> 01:51:24,010 PLEASE GIVE HIM A WARM WELCOME. 2927 01:51:24,077 --> 01:51:33,553 [ APPLAUSE ] 2928 01:51:33,620 --> 01:51:35,422 >> OKAY, THANKS VERY MUCH FOR 2929 01:51:35,488 --> 01:51:36,856 THE ORGANIZERS FOR INVITING ME 2930 01:51:36,923 --> 01:51:38,458 TO SPEAK TODAY AND IT'S A GREAT 2931 01:51:38,525 --> 01:51:40,126 HONOR TO PEEK TO THIS GROUP IN 2932 01:51:40,193 --> 01:51:43,496 THIS VERY NEW AREA OF LUPUS 2933 01:51:43,563 --> 01:51:49,969 RESEARCH USING CAR T CELLS. 2934 01:51:50,036 --> 01:51:52,472 SO FIRST OF ALL BECAUSE 2935 01:51:52,539 --> 01:51:53,740 RHEUMATOLOGY AND OTHER 2936 01:51:53,807 --> 01:51:54,374 AUTOIMMUNE FIELDS ARE KIND OF 2937 01:51:54,441 --> 01:51:56,709 NEW TO THE USE OF CAR T-CELLS, I 2938 01:51:56,776 --> 01:51:59,913 PUT IN A SLIDE ABOUT WHAT IS A 2939 01:51:59,979 --> 01:52:03,616 CAR, A CAR STANDS FOR CHIMERIC 2940 01:52:03,683 --> 01:52:06,119 ANTIGEN RECEPTOR, THESE ARE 2941 01:52:06,186 --> 01:52:07,854 FUSION PROTEINS THAT INCLUDE 2942 01:52:07,921 --> 01:52:09,222 ANTIIEN RECOGNITION MODEL 2943 01:52:09,289 --> 01:52:10,957 CITIZENETY WHICH IS USUALLY 2944 01:52:11,024 --> 01:52:14,861 DERIVED FROM A MONOCLONAL 2945 01:52:14,928 --> 01:52:16,663 ANTIBODY, HINGE AND 2946 01:52:16,729 --> 01:52:18,965 TRANSMEMBRANE DOMAIN AND THEN CO 2947 01:52:19,032 --> 01:52:20,867 STIMLATTORY DOMAINS WHICH ARE 2948 01:52:20,934 --> 01:52:23,503 USUALLY CD28 OR 41 BB, WHICH ARE 2949 01:52:23,570 --> 01:52:25,305 MOLECULES THAT HELP ACTIVATE 2950 01:52:25,371 --> 01:52:29,809 T-CELLS, AND THEN A MAIN T-CELL 2951 01:52:29,876 --> 01:52:31,311 ACTIVATION DOMAIN WHICH IS A 2952 01:52:31,377 --> 01:52:34,080 DOMAIN SUCH AS CD3 ZETA HA IS 2953 01:52:34,147 --> 01:52:35,181 USUALLY THE MAIN MECHANISM BY 2954 01:52:35,248 --> 01:52:39,085 WHICH ALL OF OUR NORMAL T-CELLS 2955 01:52:39,152 --> 01:52:39,419 ARE ACTIVATED. 2956 01:52:39,486 --> 01:52:41,521 SO THE IDEA OF THAT THING AT THE 2957 01:52:41,588 --> 01:52:44,357 TOP IS TO HAVE THIS STRUCTURE 2958 01:52:44,424 --> 01:52:46,025 WHICH IS AN ARTIFICIAL STRUCTURE 2959 01:52:46,092 --> 01:52:47,627 TO PUT THAT INTO THE PATIENTS 2960 01:52:47,694 --> 01:52:49,596 T-CELLS SO THAT THE T-CELLS CAN 2961 01:52:49,662 --> 01:52:50,864 THEN RECOGNIZE SOMETHING THEY 2962 01:52:50,930 --> 01:52:53,766 WILL NOT NORMALLY RECOGNIZE. 2963 01:52:53,833 --> 01:52:56,803 THIS IS DONE BY GENE THERAPY 2964 01:52:56,870 --> 01:52:59,105 USING A VECTOR WHICH IS USUALLY 2965 01:52:59,172 --> 01:53:00,373 A VIRUS BUT THERE ARE OTHER 2966 01:53:00,440 --> 01:53:03,209 METHODS TO DO THIS WHICH ARE 2967 01:53:03,276 --> 01:53:04,577 COMING ONLINE NOW. 2968 01:53:04,644 --> 01:53:08,181 AND THIS CAR STRUCTURE IS 2969 01:53:08,248 --> 01:53:09,849 ENCODED BY DNA, ENCODED BY THE 2970 01:53:09,916 --> 01:53:11,384 VECTOR, THE VECTOR IS USED TO 2971 01:53:11,451 --> 01:53:13,720 PUT THE CAR GENE INTO THE 2972 01:53:13,786 --> 01:53:17,257 PATIENT'S T-CELLS AND THEN THE 2973 01:53:17,323 --> 01:53:18,758 PATIENT'S OWN LIVING T-CELLS 2974 01:53:18,825 --> 01:53:20,627 EXPRESS THE CAR WHICH GIVES THE 2975 01:53:20,693 --> 01:53:22,695 PATIENTS CELLS THE ABILITY TO 2976 01:53:22,762 --> 01:53:24,197 RECOGNIZE SOME TARGET SELECTED 2977 01:53:24,264 --> 01:53:27,033 BY THE PEOPLE GENETICALLY 2978 01:53:27,100 --> 01:53:29,869 NRNLING THEIR T-CELLS, IN THIS 2979 01:53:29,936 --> 01:53:33,206 CASE WE'RE SHOWING A CAR AGAINST 2980 01:53:33,273 --> 01:53:33,406 CD19. 2981 01:53:33,473 --> 01:53:36,176 SO, I'M GOING TO SHOW SOME 2982 01:53:36,242 --> 01:53:37,844 RESULTS, WE ONLY HAVE 10 MINUTES 2983 01:53:37,911 --> 01:53:39,212 CROSS LINKINGY THE REASON WHY 2984 01:53:39,279 --> 01:53:41,548 PEOPLE ARE SO EXCITED ABOUT CAR 2985 01:53:41,614 --> 01:53:43,950 FOR LUPUS IS MAINLY BECAUSE OF 2986 01:53:44,017 --> 01:53:45,485 THE WORK OF AT LEAST INITIALLY 2987 01:53:45,552 --> 01:53:52,458 THE WORK OF DOCTORS IN GERMANY. 2988 01:53:52,525 --> 01:53:54,527 LED BY GEORGE SCHETT, HIS NAME 2989 01:53:54,594 --> 01:53:57,397 IS LAST IN THE PAPER ON 2990 01:53:57,463 --> 01:53:58,198 MEDICINE. 2991 01:53:58,264 --> 01:54:00,433 HE TREATED BY 5 REFRACTORY SLE 2992 01:54:00,500 --> 01:54:01,167 PATIENTS. 2993 01:54:01,234 --> 01:54:03,002 ALL SUBYEBS HAD CLINICAL 2994 01:54:03,069 --> 01:54:05,138 REMISSION WITHIN 3 MONTHS. 2995 01:54:05,205 --> 01:54:07,440 ONLY GREAT 1 CYTOKINE RELEASE 2996 01:54:07,507 --> 01:54:09,509 SYNDROME WHICH IS VERY, MINOR 2997 01:54:09,576 --> 01:54:11,044 TOXICITY OF CAR T-CELLS WITH 2998 01:54:11,110 --> 01:54:17,483 PEASHTS JUST HAD FEVERS 2999 01:54:17,550 --> 01:54:17,817 OCCURRED. 3000 01:54:17,884 --> 01:54:19,886 SO WHY WOULD PEOPLE USE CAR 3001 01:54:19,953 --> 01:54:21,621 T-CELLS TO TREAT LUPUS? 3002 01:54:21,688 --> 01:54:23,256 IT'S BECAUSE PEOPLE HAVE 3003 01:54:23,323 --> 01:54:25,491 DETERMINED THAT B-CELLS ARE VERY 3004 01:54:25,558 --> 01:54:27,827 IMPORTANT FOR THE PATHOGENESIS 3005 01:54:27,894 --> 01:54:28,628 OF LUPUS. 3006 01:54:28,695 --> 01:54:29,796 SO B-CELLS ARE AT LEAST A BIG 3007 01:54:29,862 --> 01:54:33,333 PART OF THE CAUSE OF LUPUS. 3008 01:54:33,399 --> 01:54:35,335 AND THE ANTICD19 CAR T-CELLS ARE 3009 01:54:35,401 --> 01:54:38,438 CAN BASICALLY KILL THE B-CELLS. 3010 01:54:38,504 --> 01:54:40,340 SO APPROXIMATE IT WE WIPE OUT 3011 01:54:40,406 --> 01:54:41,841 THE PATIENT'S B-CELLS, THE LUPUS 3012 01:54:41,908 --> 01:54:43,243 SHOULD GET BETTER AND NOBODY 3013 01:54:43,309 --> 01:54:47,013 REALLY KNEW THIS WOULD HAPPEN 3014 01:54:47,080 --> 01:54:49,215 UNTIL DR. SCHETT'S WORK AND IT 3015 01:54:49,282 --> 01:54:51,184 TURNED OUT IT WORKED VERY WELL, 3016 01:54:51,251 --> 01:54:52,919 AT LEAST IT LOOKS GREAT. 3017 01:54:52,986 --> 01:54:55,488 SO THEY DEPLETED B-CELLS FROM 3018 01:54:55,555 --> 01:54:56,923 THESE PATIENTS AND SO FAR THE 3019 01:54:56,990 --> 01:54:58,358 PATIENTS HAVE NOT RELAPSED. 3020 01:54:58,424 --> 01:55:01,761 AT THE TIME OF THIS REPORT, OR 3021 01:55:01,828 --> 01:55:04,397 THE MOST RECENT REPORT, WE HAD 3022 01:55:04,464 --> 01:55:08,234 THE FIRST PATIENT WAS 17 MONTHS 3023 01:55:08,301 --> 01:55:09,936 IN REMISSION EMPLOY SO THESE 3024 01:55:10,003 --> 01:55:12,905 GRAFS SHOW HAD SOME OTHER DATA 3025 01:55:12,972 --> 01:55:14,807 CONCERNING LUPUS, FIRST OF ALL, 3026 01:55:14,874 --> 01:55:18,278 THE FIRST GRAFT IS THE CAR 3027 01:55:18,344 --> 01:55:19,846 T-CELL LEVEL, THE CAR T-CELLS 3028 01:55:19,912 --> 01:55:21,147 LIVE IN THE BLOOD OF THE 3029 01:55:21,214 --> 01:55:23,516 PATIENTS, THEY GO UP, THE PEEKS 3030 01:55:23,583 --> 01:55:25,385 OF THOSE LINES, THEY COME DOWN, 3031 01:55:25,451 --> 01:55:26,786 SO THEY DON'T AT A UP THERE 3032 01:55:26,853 --> 01:55:28,021 FOREVER, THEY COME DOWN ASK 3033 01:55:28,087 --> 01:55:28,821 EEIVETTUALLY GO ARK WAY. 3034 01:55:28,888 --> 01:55:30,823 AND THE OTHER GRAPH WELL IS 3035 01:55:30,890 --> 01:55:32,125 B-CELLS SO YOU IS SEE THEY 3036 01:55:32,191 --> 01:55:33,459 STARTED OUT WITH THE PEASHTS HAD 3037 01:55:33,526 --> 01:55:35,395 B-CELLS IN THE BLOOD AND THEN 3038 01:55:35,461 --> 01:55:36,663 THE B-CELLS DISAPPEARED BECAUSE 3039 01:55:36,729 --> 01:55:38,231 THE CAR T-CELLS ARE GOOD AT 3040 01:55:38,298 --> 01:55:40,099 KILLING BASHING CELLS. 3041 01:55:40,166 --> 01:55:41,567 THIS IS THE LUPUS ACTIVITY 3042 01:55:41,634 --> 01:55:43,536 GRAPH, YOU CAN SEE THE LUPUS 3043 01:55:43,603 --> 01:55:44,737 ACTIVITY BY OBJECTIVE MEASURES 3044 01:55:44,804 --> 01:55:48,541 WENT DOWN SUBSTANTIALLY IN ALL 3045 01:55:48,608 --> 01:55:54,013 PATIENTS EMPLOY --THESE ARE THE 3046 01:55:54,080 --> 01:55:55,848 OTHER MEASURES THAT PEOPLE IN 3047 01:55:55,915 --> 01:55:58,151 THE ROOM FOR MORE FAMILIAR WITH 3048 01:55:58,217 --> 01:56:01,354 THAN ME, BUT PROTEIN URIA, AND 3049 01:56:01,421 --> 01:56:03,523 DOUBLE STRAND ANTIBODYINGS ALL 3050 01:56:03,589 --> 01:56:04,924 IMPROVE AFTER THE CAR T-CELL 3051 01:56:04,991 --> 01:56:05,191 TREATMENT. 3052 01:56:05,258 --> 01:56:13,966 THIS IS A COMPLICATED GRAPH, BUT 3053 01:56:14,033 --> 01:56:17,537 IT'S BEEN VERY HELPFUL IN 3054 01:56:17,603 --> 01:56:18,137 TREATING SYSTEMIC CLEROSEIS, 3055 01:56:18,204 --> 01:56:19,572 IN,A DITION TO LUPUS AND NUMBERS 3056 01:56:19,639 --> 01:56:22,008 OF PATIENTS ARE VERY LOW, BUT 3057 01:56:22,075 --> 01:56:24,010 THERE IS ACTIVITIES ANTICD19 CAR 3058 01:56:24,077 --> 01:56:26,346 T-CELLS AND OTHER TYPES OF 3059 01:56:26,412 --> 01:56:27,880 AUTOIMMUNITYS ALSO, AND THE 3060 01:56:27,947 --> 01:56:29,615 GRAPHS SHOW VARIOUS MEASURES OF 3061 01:56:29,682 --> 01:56:30,883 THESE AUTOIMMUNE DECEASES 3062 01:56:30,950 --> 01:56:39,258 IMPROVING AFTER CAR T-CELL 3063 01:56:39,325 --> 01:56:40,660 TREATMENT, YOU CAN SEE THINGS 3064 01:56:40,727 --> 01:56:42,328 LIKE VARIOUS SCALES OF MEASURING 3065 01:56:42,395 --> 01:56:43,996 THESEOT IMMUNE ACTIVITY ARE 3066 01:56:44,063 --> 01:56:50,036 IMPROVING IN THESE PATIENTS. 3067 01:56:50,103 --> 01:56:54,340 SO THIS COMES NOW FOR THE WORK 3068 01:56:54,407 --> 01:56:57,610 THAT IS LED BY DR. HOSNI, AT THE 3069 01:56:57,677 --> 01:56:59,812 NE H, I'M BASICALLY JUST AN 3070 01:56:59,879 --> 01:57:01,681 ADVISOR ON THIS BUT THE REASON 3071 01:57:01,748 --> 01:57:07,286 WHY I'M INVOLVED IS THE KYV101 3072 01:57:07,353 --> 01:57:08,354 FULLY HUMAN CD19 CAR WAS 3073 01:57:08,421 --> 01:57:10,089 DEVELOPED IN MY LAB AND WE 3074 01:57:10,156 --> 01:57:11,591 TREATED 20 PATIENTS WITH 3075 01:57:11,657 --> 01:57:13,459 LYMPHOMA WITH THIS, SO WE 3076 01:57:13,526 --> 01:57:14,994 ORIGINALLY DEVELOPED THIS TO 3077 01:57:15,061 --> 01:57:18,564 TREAT MALIGNANCY AND IT'S VERY 3078 01:57:18,631 --> 01:57:21,067 EFFECTIVE FOR TREATING LYMPHOMA, 3079 01:57:21,134 --> 01:57:25,171 THE CAR IS ALSO KNOWN AS CD1928 3080 01:57:25,238 --> 01:57:26,939 Z, THAT'S WITH WE CALL IT WHEN 3081 01:57:27,006 --> 01:57:28,574 WE TREAT IMFOAMA AND THE 3082 01:57:28,641 --> 01:57:31,677 AUTOIMMUNE SETTING IT'S CALLED 3083 01:57:31,744 --> 01:57:32,779 KYV BY THE COMPANY THAT IS, 3084 01:57:32,845 --> 01:57:34,080 WOOING ON DEVELOPING THIS, THIS 3085 01:57:34,147 --> 01:57:37,250 CAR HAS AN IMPROVED SAFETY 3086 01:57:37,316 --> 01:57:38,151 PROFILE, IT'S STRUCTURES SHOWN 3087 01:57:38,217 --> 01:57:41,521 OR THERE TO THE LEFT, IT IS A 3088 01:57:41,587 --> 01:57:45,191 HUMAN ANTIBODY DERIVED CAR, THE 3089 01:57:45,258 --> 01:57:46,859 RECOGNITION DOMAIN FOR ANTICD19 3090 01:57:46,926 --> 01:57:48,127 ANTIBODY THAT'S HUMAN, FULLY 3091 01:57:48,194 --> 01:57:52,298 HUMAN, IT HAS A CD8 HINGE, CD8 3092 01:57:52,365 --> 01:57:54,534 ALPHA TRANSMEMBRANE DOMAIN, A 3093 01:57:54,600 --> 01:57:57,170 CD28 CO STIMLATTORY BRAIN AND A 3094 01:57:57,236 --> 01:57:58,438 ZETA T-CELL ACTIVATION DOMAIN SO 3095 01:57:58,504 --> 01:58:00,273 THOSE ARE KIND OF A VERY 3096 01:58:00,339 --> 01:58:02,041 STANDARD KIND OF CAR DESIGN. 3097 01:58:02,108 --> 01:58:04,710 THERE'S NOTHING SUPER EXCITING 3098 01:58:04,777 --> 01:58:05,111 ABOUT THAT. 3099 01:58:05,178 --> 01:58:07,079 AT THE TIME IT WAS TWEPPED BACK 3100 01:58:07,146 --> 01:58:08,147 IN 2011 IT WAS MORE EXCITING BA 3101 01:58:08,214 --> 01:58:09,515 UNITED STATES IT WAS FULLY HUMAN 3102 01:58:09,582 --> 01:58:10,616 IS EVERYTHING, BUT AT THIS 3103 01:58:10,683 --> 01:58:16,289 POINT, THIS IS PRETTY STANDARD. 3104 01:58:16,355 --> 01:58:18,491 IT IS NOTABLE BECAUSE IT IS LESS 3105 01:58:18,558 --> 01:58:21,461 TOXIC THAN PREVIOUS CARS WE USE 3106 01:58:21,527 --> 01:58:23,129 TO TREAT MALIGNANCY, AND IT 3107 01:58:23,196 --> 01:58:24,964 PRODUCES LYER LEVELS OF 3108 01:58:25,031 --> 01:58:26,599 CYTOKINES AND THE CYTOKINES ARE 3109 01:58:26,666 --> 01:58:30,036 THE THINGS THAT CAUSE TOXICITY 3110 01:58:30,102 --> 01:58:31,304 IN CAR T-CELL PATIENTS. 3111 01:58:31,370 --> 01:58:33,072 I WILL TALK MORE ABOUT THAT 3112 01:58:33,139 --> 01:58:35,708 LATER, IT'S ALSO PROBABLY LOWER 3113 01:58:35,775 --> 01:58:39,645 IN IMMUNO GENERATEDISSITY 3114 01:58:39,712 --> 01:58:42,248 BECAUSE IT'S FULLY HUMAN. 3115 01:58:42,315 --> 01:58:43,416 APPROXIMATE TERPIOF THES WELL 3116 01:58:43,483 --> 01:58:45,084 WITH THIS, AND IT TREATS WELL 3117 01:58:45,151 --> 01:58:46,986 WELL ON LYMPHOMA THAT WERE MORE 3118 01:58:47,053 --> 01:58:53,526 TOXIC, SO WE TREATED LIKE I SAID 3119 01:58:53,593 --> 01:58:55,328 20 PATIENTS. 3120 01:58:55,394 --> 01:58:59,665 SO GENERAL POINTS ON CAR T-CELL 3121 01:58:59,732 --> 01:59:00,700 OX TOXICITY SINCE VERY FEW 3122 01:59:00,766 --> 01:59:02,602 PEOPLE HAVE TREATED PATES WITH 3123 01:59:02,668 --> 01:59:05,371 CAR T-CELLS, THEY RELEASE 3124 01:59:05,438 --> 01:59:05,905 CYTOKINE RELEASE SYNDROME, 3125 01:59:05,972 --> 01:59:07,039 CYTODIRECTOR OF NATIONAL 3126 01:59:07,106 --> 01:59:08,541 INSTITUTE RELEASE SYNDROME, 3127 01:59:08,608 --> 01:59:09,108 HYPOTENSION AND TACHYCARDIA 3128 01:59:09,175 --> 01:59:11,944 AMONG OTHER SIGNS AND SYMPTOMS, 3129 01:59:12,011 --> 01:59:13,779 THEY ALSO CAUSE NEUROLOGIC 3130 01:59:13,846 --> 01:59:16,549 TAXISITYS AND THE CAR T-CELL 3131 01:59:16,616 --> 01:59:21,287 TOXICITIES ARE TREATED WITH THE 3132 01:59:21,354 --> 01:59:27,326 COTTERRIC O STEROIDS AND 3133 01:59:27,393 --> 01:59:27,793 TOCILIZUMAB. 3134 01:59:27,860 --> 01:59:33,432 WE HAD A 55% COMPLETE REMISSION, 3135 01:59:33,499 --> 01:59:35,501 RATE, 40% HAD A PROGRESSION FREE 3136 01:59:35,568 --> 01:59:37,370 RADICALS SURVIVAL LASTING MORE 3137 01:59:37,436 --> 01:59:38,871 THAN 24 MONTHS MEANING THEY WERE 3138 01:59:38,938 --> 01:59:40,940 TREATMENT FREE AND LYMPHOMA FREE 3139 01:59:41,007 --> 01:59:45,378 AT MORE THAN 24 MONTHS. 3140 01:59:45,444 --> 01:59:46,245 THE MOST STRIKING THING ABOUT 3141 01:59:46,312 --> 01:59:50,049 THIS STUDY WAS THE LOW LEVEL 3142 01:59:50,116 --> 01:59:50,883 NEUROLOGIC TOXICITY, ONLY 5% OF 3143 01:59:50,950 --> 01:59:54,153 THE PATIENTS THAT GOT THIS CAR 3144 01:59:54,220 --> 01:59:56,856 HAD HAD GRADE 3 OR 4 NEUROLOGIC 3145 01:59:56,923 --> 01:59:58,658 TOXICITY, THAT WAS 1 PATIENT 3146 01:59:58,724 --> 02:00:00,993 WITH A GRADE 4 NEUROLOGIC EVENT. 3147 02:00:01,060 --> 02:00:02,395 THIS IS COMPARED TO THE OLDER 3148 02:00:02,461 --> 02:00:05,431 CAR WHERE WE HAD 50% OF THE 3149 02:00:05,498 --> 02:00:07,033 PATIENTS HAD GRADER NEUROLOGIC 3150 02:00:07,099 --> 02:00:09,302 TOXICITY SO THIS WAS A STRIKING 3151 02:00:09,368 --> 02:00:10,469 REDUCTION IN NEUROLOGIC 3152 02:00:10,536 --> 02:00:11,604 TOXICITY, HOWEVER, THIS CAR 3153 02:00:11,671 --> 02:00:12,905 STILL COULD CAUSE TOXICITY 3154 02:00:12,972 --> 02:00:14,840 IBSITY IN LYMPHOMA PATIENTS, WE 3155 02:00:14,907 --> 02:00:17,410 HAD GRADE 2 OR GREATER CRS IN 12 3156 02:00:17,476 --> 02:00:19,211 OUT OF 20 PASHTS AND THE 3157 02:00:19,278 --> 02:00:20,746 LYMPHOMA PORLD WE DON'T WORRY 3158 02:00:20,813 --> 02:00:23,182 ABOUT GRADE 2, CRS TOO MUCH, 3159 02:00:23,249 --> 02:00:26,485 IT'S JUST FEVERS AND 3160 02:00:26,552 --> 02:00:27,453 TACHYCARDIA, AND IT'S USUALLY 3161 02:00:27,520 --> 02:00:32,892 TREATED WITH SUPPORTIVE CARE AND 3162 02:00:32,959 --> 02:00:33,926 INJECTION OF TOCILIZUMAB, BUT IT 3163 02:00:33,993 --> 02:00:36,596 DOES OCCUR AND IT IS TOXICITY WE 3164 02:00:36,662 --> 02:00:37,863 NEED TO BE AWARE OF AND 3165 02:00:37,930 --> 02:00:38,364 CONCERNED ABOUT. 3166 02:00:38,431 --> 02:00:40,032 WE TREAT THE PATIENTS ON THIS 3167 02:00:40,099 --> 02:00:42,702 TRIAL, 1 RECEIVED CORDIC O 3168 02:00:42,768 --> 02:00:46,572 STEROIDS FOR TOXICITYIT. 3169 02:00:46,639 --> 02:00:48,708 ONE RECEIVED TOCILIZUMAB, AND 1 3170 02:00:48,774 --> 02:00:50,876 RECEIVED IT FOR COTTERRIC O 3171 02:00:50,943 --> 02:00:51,577 STEROIDS FOR CRS. 3172 02:00:51,644 --> 02:00:53,112 SO THE TOXICITY CAN BE TREATED. 3173 02:00:53,179 --> 02:00:54,180 NOW THE WHOLE POINT OF THIS 3174 02:00:54,246 --> 02:00:55,281 WHICH I MENTIONED A COUPLE TIMES 3175 02:00:55,348 --> 02:00:57,049 IS THAT THE CAR T-CELLS ARE 3176 02:00:57,116 --> 02:01:02,154 INCREDIBLE LOAMACY I GOOD AT 3177 02:01:02,221 --> 02:01:03,522 DEPLETING B-CELLS AND THAT OTHER 3178 02:01:03,589 --> 02:01:05,491 PEOPLE HAVE SHOWN THAT B-CELLS 3179 02:01:05,558 --> 02:01:06,592 ARE REALLY IMPORTANT FOR LUPUS 3180 02:01:06,659 --> 02:01:09,128 SO I WANT TO SHOW WHY THESE ARE, 3181 02:01:09,195 --> 02:01:09,996 AND WHY THEY'RE DIFFERENT FROM 3182 02:01:10,062 --> 02:01:11,697 OTHER TREATMENT AND WE HAVE 3183 02:01:11,764 --> 02:01:12,398 EVIDENCE FROM LYMPHOMA PATIENTS 3184 02:01:12,465 --> 02:01:14,200 ABOUT THE POWER OF CAR TISSUING 3185 02:01:14,266 --> 02:01:16,402 CELLS DEPLETING THE POWER OF THE 3186 02:01:16,469 --> 02:01:16,736 B-CELLS. 3187 02:01:16,802 --> 02:01:24,210 SO, I INCLUED ON THESE GRAPHS 3188 02:01:24,276 --> 02:01:27,613 PATIENTS WITH HU19-CD828 Z 3189 02:01:27,680 --> 02:01:29,181 TREATMENT AND HAD 4 MONTHS MUCH 3190 02:01:29,248 --> 02:01:33,019 FOLLOW UP AND NO BLOOD LYMPHOMA 3191 02:01:33,085 --> 02:01:34,053 INVOLVEMENT, PEASHTS 5, 6, 13, 3192 02:01:34,120 --> 02:01:36,255 YOU CAN SEE THESE PATIENTS HAD 3193 02:01:36,322 --> 02:01:37,857 B-CELLS IN THEIR BLOOD 3194 02:01:37,923 --> 02:01:38,924 PRETREATMENT WITH THE CAR T-CELL 3195 02:01:38,991 --> 02:01:41,460 AND THEN THE B-CELL LEVELS ARE 3196 02:01:41,527 --> 02:01:43,162 ALL DOWN NEAR 0 CAN THAT GOES 3197 02:01:43,229 --> 02:01:44,997 OUT TO 60 MONTHS, SO AT 5 YEARS, 3198 02:01:45,064 --> 02:01:49,935 SOME OF THOSE PATIENTS HAVE 3199 02:01:50,002 --> 02:01:51,537 B-CELLS, BASICALLY FONNATES OF 3200 02:01:51,604 --> 02:01:53,172 THEM HAVE THESELY AND YOU MIGHT 3201 02:01:53,239 --> 02:01:54,707 ASK WHY SOME OF THESE PATIENTS 3202 02:01:54,774 --> 02:01:56,308 HAVE LOW B-CELLS AT THE 3203 02:01:56,375 --> 02:01:58,744 BEGINNING AND IT'S BECAUSE WE 3204 02:01:58,811 --> 02:02:01,047 TREAT THEM WITH CHEMOTHERAPY, 3205 02:02:01,113 --> 02:02:02,615 AND REDUCES THEIR B-CELLS TO 3206 02:02:02,682 --> 02:02:03,783 BEGIN, THE OTHER GRAPH SHOWS 3207 02:02:03,849 --> 02:02:06,218 PATIENT OF LESS THAN 2 BLOOD 3208 02:02:06,285 --> 02:02:11,223 CELLS PER B-CELL, AND MICROLITER 3209 02:02:11,290 --> 02:02:12,391 AND NOT MILLILITER, AND SOME OF 3210 02:02:12,458 --> 02:02:14,727 THE PATIENTS HAD B-CELL RECOVERY 3211 02:02:14,794 --> 02:02:17,163 BUT SOME OF THEM HAD B-CELL 3212 02:02:17,229 --> 02:02:20,266 BEPLETION LEFTING UP TO 5 YEARS. 3213 02:02:20,332 --> 02:02:23,002 --LASTING UP TO 5 YEARS SO CAR 3214 02:02:23,069 --> 02:02:27,239 T-CELLS ARE GOOD AT DEPLETING 3215 02:02:27,306 --> 02:02:27,473 B-CELLS. 3216 02:02:27,540 --> 02:02:29,475 WE ARE PLANNING ON OPENING A 3217 02:02:29,542 --> 02:02:31,811 STUDY, AGAIN, DR. HOSNI WILL BE 3218 02:02:31,877 --> 02:02:33,913 THE PI FOR THE STUDY FOR 3219 02:02:33,979 --> 02:02:35,848 TREATING LUPUS NEPHRITIS AT THE 3220 02:02:35,915 --> 02:02:39,752 NIH WITH A KYV 101 CAR I'VE BEEN 3221 02:02:39,819 --> 02:02:40,820 TALKING ABOUT, SO ELIGIBLE 3222 02:02:40,886 --> 02:02:48,694 PATIENTS WILL HAVE TO HAVE A 3223 02:02:48,761 --> 02:02:52,364 FORMAL DIAGNOSIS OF SLE, ACTIVE 3224 02:02:52,431 --> 02:02:54,400 BIOPSY PROVEN CLASS 3 OR 4, AND 3225 02:02:54,467 --> 02:02:58,738 INADEQUATE RESPONSE TO STANDARD 3226 02:02:58,804 --> 02:03:00,439 THERAPIES; AND 9 TO 12 PATIENTS 3227 02:03:00,506 --> 02:03:03,209 WILL BE ENROLL IN A DOSE 3228 02:03:03,275 --> 02:03:04,944 ESCALATION STUDY TO EVALUATE 3229 02:03:05,010 --> 02:03:07,480 SAFETY ANDERABILITY, AND EACH 3230 02:03:07,546 --> 02:03:08,781 DOSE LEVEL WILL INCLUDE A 3231 02:03:08,848 --> 02:03:10,116 MINIMUM OF 3 SUBRECYCLINGS. 3232 02:03:10,182 --> 02:03:11,417 SOME OF THESE ARE 3233 02:03:11,484 --> 02:03:13,018 MULTISPONSORRED TRIALS SOME OF 3234 02:03:13,085 --> 02:03:14,086 THESE STEPS ARE ALREADY UNDERWAY 3235 02:03:14,153 --> 02:03:15,755 AND WE HOPE TO OPEN THE NIH ARM 3236 02:03:15,821 --> 02:03:17,156 OF THE STUDY VERY SOON, YOU CAN 3237 02:03:17,223 --> 02:03:18,824 SEE THERE THAT THE CAR DOSE 3238 02:03:18,891 --> 02:03:19,992 LEVELS ARE PAIRLY MODEST 3239 02:03:20,059 --> 02:03:21,327 COMPARED TO WHAT WE TESTED 3240 02:03:21,393 --> 02:03:21,660 BEFORE. 3241 02:03:21,727 --> 02:03:23,763 WE TESTED HIGHER DOSES OF THIS, 3242 02:03:23,829 --> 02:03:28,000 IN PATIENTS WITH LYMPHOMA, BUT 3243 02:03:28,067 --> 02:03:29,668 THE DOSES OF 0.5 MILLION, 0.5 3244 02:03:29,735 --> 02:03:31,337 TIMES 10 TO THE EIGHTH CAR 3245 02:03:31,403 --> 02:03:33,372 T-CELLS ARE 1 TO TIMES TO THE 3246 02:03:33,439 --> 02:03:35,908 EIGHTH CAR T-CELLS AND NOTABLY 3247 02:03:35,975 --> 02:03:37,710 THE CAR T-CELL THERAPY IS 3248 02:03:37,777 --> 02:03:39,779 PRECEDED BY CONDITIONING CHEMO 3249 02:03:39,845 --> 02:03:40,346 THERAPY OR AND PSYCHOFOSTER 3250 02:03:40,412 --> 02:03:42,648 NURSED FOSTER NURSED MADE 3251 02:03:42,715 --> 02:03:44,316 BECAUSE THE CHEMO THERAPY 3252 02:03:44,383 --> 02:03:44,984 DROOMATICALLY ENHANCES THE 3253 02:03:45,050 --> 02:03:46,519 ACTIVITY OF THE CAR T-CELLS. 3254 02:03:46,585 --> 02:03:48,554 SO AGAIN, HOW WILL THE STUDY 3255 02:03:48,621 --> 02:03:49,188 GENERALLY BE DONE? 3256 02:03:49,255 --> 02:03:51,223 PATIENTS WILL BE KREENED. 3257 02:03:51,290 --> 02:03:53,692 IF THEY'RE ELIGIBLE TO UNDERGO 3258 02:03:53,759 --> 02:03:56,128 APHORESIS, HERE AT THE NOORK H, 3259 02:03:56,195 --> 02:03:57,530 AFTER APHORESIS, THE PATIENT 3260 02:03:57,596 --> 02:04:00,266 CELLS ARE SHIPPED TO A CENTRAL 3261 02:04:00,332 --> 02:04:02,601 MANUFACTURING FACILITY. 3262 02:04:02,668 --> 02:04:03,736 IT'S IF PHILADELPHIA, AND AT 3263 02:04:03,803 --> 02:04:05,037 THAT PLACE THE COMPANY HAS 3264 02:04:05,104 --> 02:04:06,505 ARRANGED TO HAVE THE CELLS 3265 02:04:06,572 --> 02:04:08,040 PRODUCED, THE CELLS WILL BE 3266 02:04:08,107 --> 02:04:10,810 SHIPPED BACK TO THE NIH FOR THE 3267 02:04:10,876 --> 02:04:11,143 INFEEGZ. 3268 02:04:11,210 --> 02:04:14,413 DURING THIS TIME OF 3269 02:04:14,480 --> 02:04:17,149 MANUFACTURING THE PATIENTS CAN 3270 02:04:17,216 --> 02:04:18,384 RESUME LUPUS NEPHRITIS DISEASE 3271 02:04:18,450 --> 02:04:19,652 THERAPY IF NEEDED AND AS I 3272 02:04:19,718 --> 02:04:21,954 MEKSED WIDE RECEIVER THE CAR 3273 02:04:22,021 --> 02:04:24,290 T-CELL INFUSION THEY WILL GET 3274 02:04:24,356 --> 02:04:34,834 DEPLETING CONDITIONING CHEMO 3275 02:04:39,171 --> 02:04:39,271 THERAPY. 3276 02:04:39,338 --> 02:04:41,106 AFTER THEY GO INTO FOR THE 3277 02:04:41,173 --> 02:04:44,410 STUDY, THEY WILL BE MONITORED. 3278 02:04:44,476 --> 02:04:46,812 SO THE PRIMARY OBJECTIVES ARE 3279 02:04:46,879 --> 02:04:50,416 THE PRIMARY END POINTS ARE ARE 3280 02:04:50,482 --> 02:04:52,918 END SEVERITY AND LAB RAARE TOY 3281 02:04:52,985 --> 02:04:53,285 ABNORMALITIES. 3282 02:04:53,352 --> 02:04:54,887 THE FREQUENCY OF DLTs AT EACH 3283 02:04:54,954 --> 02:04:56,722 LEVEL WILL BE A PRIMARY END 3284 02:04:56,789 --> 02:04:58,324 POINT AND THERE ARE MANY 3285 02:04:58,390 --> 02:04:58,958 SECONDARY OBLIGATIONS YECTIVES 3286 02:04:59,024 --> 02:05:03,229 ALL AIMED AT MEASURING LUPUS 3287 02:05:03,295 --> 02:05:06,232 RESPONSE AND IN ADDITION BASIC 3288 02:05:06,298 --> 02:05:07,600 CAR T-CELL MEASURES SUCH AS THE 3289 02:05:07,666 --> 02:05:08,534 CAR TISSUING CELL LEVELS IN THE 3290 02:05:08,601 --> 02:05:10,836 BLOOD OF THE PATIENTS. 3291 02:05:10,903 --> 02:05:13,505 SO, I ACKNOWLEDGE MY COWORKERS 3292 02:05:13,572 --> 02:05:16,075 ON THIS, DOCTOR AS I MENTIONED 3293 02:05:16,141 --> 02:05:18,244 HOSNI WILL BE THE PUNISHING I, 3294 02:05:18,310 --> 02:05:20,846 THE STUDY, THE PHYSICIAN AND NCI 3295 02:05:20,913 --> 02:05:25,117 WORKS CLOSELY WITH ME, MOOMG 3296 02:05:25,184 --> 02:05:29,622 THIS PROJECT AMONG MANY OTHERS, 3297 02:05:29,688 --> 02:05:30,923 ELAINE PONCIO HAS BEEN WORKING 3298 02:05:30,990 --> 02:05:32,091 HARD TO GET THIS STUDY OPEN, 3299 02:05:32,157 --> 02:05:37,429 THERE ARE VARIOUS PEOPLE IN MY 3300 02:05:37,496 --> 02:05:38,731 LAB, NORRIS LAM AND OTHER WHO IS 3301 02:05:38,797 --> 02:05:39,932 WORKED ON MAKING THIS CAR, CAN 3302 02:05:39,999 --> 02:05:42,001 IN THE DEPARTMENT OF TRANSFUSION 3303 02:05:42,067 --> 02:05:43,102 MEDICINE, VERY IMPORTANT 3304 02:05:43,168 --> 02:05:43,903 COLLABORATORS WILL WORK ON THIS 3305 02:05:43,969 --> 02:05:46,338 STUDY TO HELP US GET THE CAR 3306 02:05:46,405 --> 02:05:47,439 T-CELLS MANUFACTURED AND SHIPPED 3307 02:05:47,506 --> 02:05:49,608 AND INFUSED INTO THE PATIENT. 3308 02:05:49,675 --> 02:05:51,911 AND THEN WE HAVE COLLEAGUES AND 3309 02:05:51,977 --> 02:05:53,112 PATHOLOGY WHO HAVE BEEN WORKING 3310 02:05:53,178 --> 02:05:57,917 ON THIS PROJECT DOING VERSE 3311 02:05:57,983 --> 02:06:03,722 CLOSE CYTOMETRY AND IMMUNO 3312 02:06:03,789 --> 02:06:04,123 CHEMISTRY ASSAYS. 3313 02:06:04,189 --> 02:06:05,457 THANK YOU VERY MUCH FOR YOUR 3314 02:06:05,524 --> 02:06:09,228 ATTENTION. 3315 02:06:09,295 --> 02:06:17,469 [ APPLAUSE ] 3316 02:06:17,536 --> 02:06:17,703 DINNER. 3317 02:06:17,770 --> 02:06:18,737 >> THANK YOU. 3318 02:06:18,804 --> 02:06:21,140 THE NEXT SPEAKER IS MISS JUNE B. 3319 02:06:21,206 --> 02:06:26,278 CHU, SHE WILL SPEAK ON QUALITY 3320 02:06:26,345 --> 02:06:28,247 INDICATOR SAYS FOR LUPUS 3321 02:06:28,314 --> 02:06:30,783 PATIENTS AT THE NIH. 3322 02:06:30,849 --> 02:06:33,152 PLEASE GIVE HER A WARM WELCOME. 3323 02:06:33,218 --> 02:06:33,585 >> HI, EVERYONE. 3324 02:06:33,652 --> 02:06:36,155 SO WE'VE COME A LONG WAY OVER 3325 02:06:36,221 --> 02:06:38,824 THE LAUGH THIRD YEARS AND 3326 02:06:38,891 --> 02:06:40,526 TODAY'S DC LUPUS CONSORTIUM HAS 3327 02:06:40,592 --> 02:06:42,995 HIGHLIGHTED AND VALIDATED SOME 3328 02:06:43,062 --> 02:06:45,130 OF OUR FREMEDENDOUS PROGRESS. 3329 02:06:45,197 --> 02:06:48,334 MY TOPIC TODAY IS ON 3330 02:06:48,400 --> 02:06:49,268 IMPLEMENTING QUALITY INDICATORS 3331 02:06:49,335 --> 02:06:54,239 FOR LUPUS PATIENTS AT THE NIH. 3332 02:06:54,306 --> 02:06:56,342 YOU WILL SEE A LOT OF 3333 02:06:56,408 --> 02:06:57,977 DEFINITIONS ON QUALITY 3334 02:06:58,043 --> 02:07:00,446 INDICATORS OR QI BUT IN BROAD 3335 02:07:00,512 --> 02:07:04,316 TERPS QI IS TO STANDARDIZE AND 3336 02:07:04,383 --> 02:07:06,218 IMPROVE HEALTH OUTCOMES AND 3337 02:07:06,285 --> 02:07:08,187 LUPUS IS DESIRABLE BECAUSE IT'S 3338 02:07:08,253 --> 02:07:12,257 A MULTIORGAN DISEASE WITH VARIED 3339 02:07:12,324 --> 02:07:18,731 MAN TESTACEANS. 3340 02:07:18,797 --> 02:07:23,702 PATIENTS CAN ACCUMULATE ORGAN 3341 02:07:23,769 --> 02:07:24,670 ISSUES OVER TIME. 3342 02:07:24,737 --> 02:07:26,805 SO WHAT TYPE OF QUALITY 3343 02:07:26,872 --> 02:07:28,807 INDICATORS HAVE WE IMPLEMENTED 3344 02:07:28,874 --> 02:07:29,675 HERE AT NIH. 3345 02:07:29,742 --> 02:07:31,577 WE DEVELOPED A STANDARDIZED 3346 02:07:31,643 --> 02:07:33,412 VISIT NOTE OF COMPREHENSIVE 3347 02:07:33,479 --> 02:07:35,247 LUPUS CLINICAL CARE EMPLOY WE'VE 3348 02:07:35,314 --> 02:07:35,748 CREATED A HEALTH NATIVE 3349 02:07:35,814 --> 02:07:36,382 AMERICANS IN THE NORTHERNINENCE 3350 02:07:36,448 --> 02:07:38,317 SECTION IN EACH OF THE 3351 02:07:38,384 --> 02:07:40,352 STANDARDIZED LUPUS NOTES, WE 3352 02:07:40,419 --> 02:07:42,421 DEVELOPED A SUNSCREEN BROCHURE 3353 02:07:42,488 --> 02:07:44,056 TO PROMOTE SUNSCREEN EDUCATION, 3354 02:07:44,123 --> 02:07:45,257 WE DEVELOPED LUPUS DISEASE 3355 02:07:45,324 --> 02:07:46,825 ACTIVITY SCORING TOOL IN OUR 3356 02:07:46,892 --> 02:07:49,661 ELECTRONIC MEDICAL RECORD 3357 02:07:49,728 --> 02:07:52,197 SYSTEM, OR CHRIS, AND 3358 02:07:52,264 --> 02:07:53,032 IMPLEMENTED REPRODUCTIVE HELT 3359 02:07:53,098 --> 02:07:55,701 INITIATIVE AS WELL AND LASTLY WE 3360 02:07:55,768 --> 02:08:00,239 WORK CLOSELY WITH THE COMMUNITY 3361 02:08:00,305 --> 02:08:01,206 PROVIDERS. 3362 02:08:01,273 --> 02:08:02,408 FOR STANDARDIZED NOTES THAT IS A 3363 02:08:02,474 --> 02:08:03,675 CLINICAL NOTE WE USE WITH EACH 3364 02:08:03,742 --> 02:08:06,912 VISIT WITH WE SEE OUR LUPUS 3365 02:08:06,979 --> 02:08:09,181 COHORT THAT INSURES 3366 02:08:09,248 --> 02:08:10,249 INTERNATIONALLY RECOGNIZED 3367 02:08:10,315 --> 02:08:11,917 QUALITY INDICATORS ARE MET THIS 3368 02:08:11,984 --> 02:08:12,818 HELPS WITHSTAND ARDIZEATION OF 3369 02:08:12,885 --> 02:08:15,020 CARE AS WELL AS EFFICIENT AND 3370 02:08:15,087 --> 02:08:18,123 DATA EXTRACTION FOR RESEARCH 3371 02:08:18,190 --> 02:08:18,390 PURPOSES. 3372 02:08:18,457 --> 02:08:20,893 AND WITHIN EACH OF THESE 3373 02:08:20,959 --> 02:08:22,928 STANDARDIZED LUPUS NOTES WE HAVE 3374 02:08:22,995 --> 02:08:25,230 A HEALTH MAINTENANCE SECTION 3375 02:08:25,297 --> 02:08:26,598 WHICH ADDRESSES VACCINATIONS, 3376 02:08:26,665 --> 02:08:28,333 RECOMMENDED FOR LUPUS PATIENTS, 3377 02:08:28,400 --> 02:08:30,269 BONE HEALTH THAT IMPLEMENTS 3378 02:08:30,335 --> 02:08:32,704 CALCIUM VITAMIN D USE, BONE 3379 02:08:32,771 --> 02:08:33,972 DENSITY SCREENING AND CHECKING 3380 02:08:34,039 --> 02:08:36,475 FOR VITAMIN D LEVELS. 3381 02:08:36,542 --> 02:08:38,677 WE ALSO LOOK AT AGE RELATED 3382 02:08:38,744 --> 02:08:42,281 HEALTH SCREENINGS SUCH AS 3383 02:08:42,347 --> 02:08:44,083 MAMMOGRAMS, COLONOSCOPYS 3384 02:08:44,149 --> 02:08:45,851 GYNECOLOGY VISITS AND WE ASSESS 3385 02:08:45,918 --> 02:08:50,589 FOR CARDIOVASCULAR RISK AS WELL 3386 02:08:50,656 --> 02:08:54,193 EMPLOY PHOTO SENSITIVITY IS A 3387 02:08:54,259 --> 02:08:55,094 COMMON LUPUS MANIFESTATION, IT'S 3388 02:08:55,160 --> 02:08:57,096 IMPORTANT TO HELP DECREASE LUPUS 3389 02:08:57,162 --> 02:08:58,630 FLARE, TO PROMOTE AND EDUCATE 3390 02:08:58,697 --> 02:09:00,499 SUNSCREEN USE, WE DEVELOPED A 3391 02:09:00,566 --> 02:09:02,234 SUNSCREEN BROCHURE WHICH IS IN 3392 02:09:02,301 --> 02:09:03,769 YOUR WONDERFUL PURPLE FOLDERS 3393 02:09:03,836 --> 02:09:05,737 TODAY, THEY'RE IN BOTH ENGLISH 3394 02:09:05,804 --> 02:09:08,440 AND SPANISH TO DISSEMINATE THE 3395 02:09:08,507 --> 02:09:10,509 BEST TYPE OF SUNSCREEN THAT 3396 02:09:10,576 --> 02:09:15,714 GIVES THE BEST PROTECTION FOR 3397 02:09:15,781 --> 02:09:16,682 LUPUS PATIENTS. 3398 02:09:16,748 --> 02:09:18,884 FOR DISEASE ACTIVITY STORES WE 3399 02:09:18,951 --> 02:09:21,920 ADD THE LUPUS DISEASE ACTIVITY 3400 02:09:21,987 --> 02:09:25,023 INDEX FOR THE DEC DAMAGE ACCRUAL 3401 02:09:25,090 --> 02:09:27,226 INDEX, PLIP AND FLOABAL 3402 02:09:27,292 --> 02:09:29,862 ASSESSMENT TO EMR TO STABBED 3403 02:09:29,928 --> 02:09:31,263 ARDIZE AND INCORPORATE NECESSARY 3404 02:09:31,330 --> 02:09:32,564 RESEARCH EXTRACTION, FOR 3405 02:09:32,631 --> 02:09:33,599 CLINICAL PURPOSES THIS IS 3406 02:09:33,665 --> 02:09:35,267 HELPFUL TO TRACK AND TREND LUPUS 3407 02:09:35,334 --> 02:09:37,102 DISEASE AND HELPING WITH LUPUS 3408 02:09:37,169 --> 02:09:37,402 MANAGEMENT. 3409 02:09:37,469 --> 02:09:39,304 ALL OF THESE SCORES ARE 3410 02:09:39,371 --> 02:09:44,276 COMPLOATED AFTER EACH PATIENT 3411 02:09:44,343 --> 02:09:47,012 VISIT. 3412 02:09:47,079 --> 02:09:48,514 OUR REPRODUCTIVE INITIATIVE IS 3413 02:09:48,580 --> 02:09:52,151 SOMETHING I'M INTERESTED IN, WE 3414 02:09:52,217 --> 02:09:55,554 HAVE IMPLEMENTED HEALTH 3415 02:09:55,621 --> 02:09:57,623 REPRODUCTION, WE,A ASSESSES 3416 02:09:57,689 --> 02:10:01,160 HEALTH HISTORY, WE ASK FEMALES 3417 02:10:01,226 --> 02:10:03,228 OF CHAILD BEARING AGE IN THERE 3418 02:10:03,295 --> 02:10:04,796 INTEREST IN THE FIXTURE 12 3419 02:10:04,863 --> 02:10:08,934 MONTHS AND DEPENDING ON THEIR 3420 02:10:09,001 --> 02:10:10,936 ANSWERS WE GIVE THEM MEDICATIONS 3421 02:10:11,003 --> 02:10:12,804 ARE OR DISCUSS RISK FACTORS 3422 02:10:12,871 --> 02:10:14,273 DURING PREGNANCIES AND LASTLY WE 3423 02:10:14,339 --> 02:10:17,276 WILL WORK VERY CLOSELY WITH A 3424 02:10:17,342 --> 02:10:19,044 PATIENT'S MATERNAL FETAL 3425 02:10:19,111 --> 02:10:20,145 MEDICINE AND OBGYN EMPLOY HERE 3426 02:10:20,212 --> 02:10:22,247 ARE SOME OF THE PEBLICATIONS AND 3427 02:10:22,314 --> 02:10:23,148 PRESCRIBING SEBTATIONS THAT 3428 02:10:23,215 --> 02:10:24,116 VILLAIN ACCEPTED AT 3429 02:10:24,183 --> 02:10:26,385 INTERNATIONAL CONFERENCES WHERE 3430 02:10:26,451 --> 02:10:30,589 WE TALK ABOUT IMPLEMENTING LUPUS 3431 02:10:30,656 --> 02:10:32,457 QUALITY IMPLICATORS AND QUALITY 3432 02:10:32,524 --> 02:10:33,058 REPRODICTIVE HEALTH MEDICINE. 3433 02:10:33,125 --> 02:10:33,759 YOU'VE SEEN THIS PICTURE 3434 02:10:33,825 --> 02:10:35,594 THROUGHOUT THE DAY, THIS IS OUR 3435 02:10:35,661 --> 02:10:36,328 WONDERFUL TEAM. 3436 02:10:36,395 --> 02:10:37,996 KUDOS TO EVERYONE WE'RE AND OUR 3437 02:10:38,063 --> 02:10:40,399 COMBINED EFFORTS AND IMPROVING 3438 02:10:40,465 --> 02:10:41,099 LUPUS CLINICAL RESEARCH AND 3439 02:10:41,166 --> 02:10:42,367 THANK AND YOU PLEASE LET ME KNOW 3440 02:10:42,434 --> 02:10:52,878 IF YOU HAVE ANY QUESTIONS. 3441 02:10:54,680 --> 02:10:56,715 [ APPLAUSE ] 3442 02:10:56,782 --> 02:10:57,382 NTHANK YOU JUN. 3443 02:10:57,449 --> 02:10:59,851 NEXT WE HAVE MR. MICHAEL DAVIS 3444 02:10:59,918 --> 02:11:01,453 NURSE PRACTITIONER, HE WILL 3445 02:11:01,520 --> 02:11:04,122 PROVIDE AN OVERSLEW OF THE 3446 02:11:04,189 --> 02:11:04,656 [INDISCERNIBLE] STUDY. 3447 02:11:04,723 --> 02:11:15,267 PLEASE GIVE HIM A WARM WELCOME. 3448 02:11:17,002 --> 02:11:17,903 >> GOOD MORNING. 3449 02:11:17,970 --> 02:11:19,471 I NORMALLY WORK BIGGER VENUES, 3450 02:11:19,538 --> 02:11:24,876 BUT THIS IS THE FIRST 1 POST 3451 02:11:24,943 --> 02:11:25,077 COVID. 3452 02:11:25,143 --> 02:11:27,379 [LAUGHTER] 3453 02:11:27,446 --> 02:11:28,614 SO. 3454 02:11:28,680 --> 02:11:31,850 YOU KNOW. 3455 02:11:31,917 --> 02:11:32,718 YOU'RE WELCOME. 3456 02:11:32,784 --> 02:11:35,821 I'M BEING SILLY, I AM ACTUALLY 3457 02:11:35,887 --> 02:11:36,655 TOTALLY BLOWN AWAY BY THE NUMBER 3458 02:11:36,722 --> 02:11:38,190 OF PEOPLE THAT SHOWED UP AND I 3459 02:11:38,257 --> 02:11:39,925 WANT TO SAY THANK YOU TO THE 3460 02:11:39,992 --> 02:11:41,426 PATIENTS IN PARTICULAR WHO HAVE 3461 02:11:41,493 --> 02:11:44,529 SHOWN UP AS WELL AS TO OUR 3462 02:11:44,596 --> 02:11:48,066 REFERRING PHYSICIANS AND OUR 3463 02:11:48,133 --> 02:11:48,767 COLLABORATORS OUT THERE BECAUSE 3464 02:11:48,834 --> 02:11:50,669 IF YOU WERE NOT THERE, WE WOULD 3465 02:11:50,736 --> 02:11:53,572 BE SITTING HERE HANGING OUT 3466 02:11:53,639 --> 02:11:57,242 BEING GOVERNMENT EMPLOYEES. 3467 02:11:57,309 --> 02:11:57,509 [LAUGHTER] 3468 02:11:57,576 --> 02:12:00,145 ALL RIGHT. 3469 02:12:00,212 --> 02:12:01,813 SO, THEY GAVE ME 5 MINUTES TO 3470 02:12:01,880 --> 02:12:03,315 TALK ABOUT SOMETHING THAT WILL 3471 02:12:03,382 --> 02:12:09,621 TAKE 2 MINUTES, SO I'LL GO 3472 02:12:09,688 --> 02:12:11,456 IMMEDIATELY OFF TOPIC, IF I 3473 02:12:11,523 --> 02:12:14,192 START RAMBLING OFF, IT'S BECAUSE 3474 02:12:14,259 --> 02:12:16,862 I HAVE THYROID FOG, I GOT ZAPPED 3475 02:12:16,928 --> 02:12:18,163 A COUPLE MONTHS AGO, SHE WAS 3476 02:12:18,230 --> 02:12:19,431 LIKE WHAT IS WRONG WITH YOU? 3477 02:12:19,498 --> 02:12:21,667 SO I DISCOVERED A NEW TYPE OF 3478 02:12:21,733 --> 02:12:24,069 FOG, ANYBODY HEARD OF LUPUS FOG, 3479 02:12:24,136 --> 02:12:27,372 NOW I UNDERSTAND YOU QUITE 3480 02:12:27,439 --> 02:12:27,606 CLEARLY. 3481 02:12:27,673 --> 02:12:31,109 SO THE POINT IS, READ THE 3482 02:12:31,176 --> 02:12:33,211 SLIDES, IF I START NOT MAKING 3483 02:12:33,278 --> 02:12:35,147 ANY SENSE. 3484 02:12:35,213 --> 02:12:38,016 SO, I THINK THE TITLE KIND OF 3485 02:12:38,083 --> 02:12:42,054 SUMMARIZES EVERYTHING, IT'S THE 3486 02:12:42,120 --> 02:12:44,790 ROLE OF [INDISCERNIBLE] IN 3487 02:12:44,856 --> 02:12:53,932 PATIENTS WITH SYSTEMIC LUPUS, 3488 02:12:53,999 --> 02:12:54,533 SYSTEMIC LUPUS ERYTHEMATOSUS, 3489 02:12:54,599 --> 02:12:56,368 FOR THOSE THAT DON'T KNOW WE 3490 02:12:56,435 --> 02:12:58,203 REALLY HAVE GONE DOWN THE HOLE 3491 02:12:58,270 --> 02:13:00,839 WITH THE LUPUS CLINICAL RESEARCH 3492 02:13:00,906 --> 02:13:02,274 PROGRAM. 3493 02:13:02,341 --> 02:13:04,943 I WILL QUICKLY BRIEF WHY, THE 3494 02:13:05,010 --> 02:13:06,545 WHO, THE WHAT AND THE WHERE AND 3495 02:13:06,611 --> 02:13:08,513 THE WHEN AND WHERE, SO CAN YOU 3496 02:13:08,580 --> 02:13:09,481 HAVE AN UNDERSTANDING FELT STUDY 3497 02:13:09,548 --> 02:13:12,317 IN PARTICULAR IF YOU WANT TO 3498 02:13:12,384 --> 02:13:16,855 REFER SOMEONE, PLEASE DO SO. 3499 02:13:16,922 --> 02:13:18,590 ALL RIGHT, SO, THE WHY HAS 3500 02:13:18,657 --> 02:13:20,092 ALREADY BEEN ADDRESSED SO I'LL 3501 02:13:20,158 --> 02:13:23,095 GLOSS OVER THIS, DR. KAPLAN, 3502 02:13:23,161 --> 02:13:27,332 MENTION THE 50% FOLD INCRACY IN 3503 02:13:27,399 --> 02:13:30,435 CARDIOVASCULAR RISK THAT 3504 02:13:30,502 --> 02:13:31,770 CARDIOVASCULAR EVENTS ACCOUNT 3505 02:13:31,837 --> 02:13:32,304 FOR ONE-THIRD OF DEATHS. 3506 02:13:32,371 --> 02:13:36,341 WE KNOW THAT TYPE 1 INTERFERONS 3507 02:13:36,408 --> 02:13:40,879 ARE IMPORTANT DRIVERS OF THIS 3508 02:13:40,946 --> 02:13:41,780 AND VASCULAR DAMAGE. 3509 02:13:41,847 --> 02:13:46,651 SO, WE'RE LOOKING TO SEE DO WE 3510 02:13:46,718 --> 02:13:50,288 IMPROVE VASCULAR FUNCTION WITH 3511 02:13:50,355 --> 02:13:52,457 ANIFROLUMAB, ARE WE DECREASING 3512 02:13:52,524 --> 02:13:53,625 VASCULAR INFLAMMATION, WILL 3513 02:13:53,692 --> 02:13:56,094 THERE BE A MODULATION BIOMARKERS 3514 02:13:56,161 --> 02:13:57,496 OF VASCULAR RISK AND OF COURSE 3515 02:13:57,562 --> 02:14:06,438 ALWAYS LOOKING AT SAFETY EMPLOY 3516 02:14:06,505 --> 02:14:07,639 NOW ANIFROLUMAB IS ALREADY 3517 02:14:07,706 --> 02:14:09,741 APPROVED FOR LUPUS SO WE'RE NOT 3518 02:14:09,808 --> 02:14:14,913 EXECKING A MAJOR ISSUE WITH THE 3519 02:14:14,980 --> 02:14:17,315 SAFETY. 3520 02:14:17,382 --> 02:14:17,983 WHO? 3521 02:14:18,049 --> 02:14:20,652 WE ARE LOOKING FOR PATIENTS WHO 3522 02:14:20,719 --> 02:14:22,821 18-80, SO ALMOST EVERYBODY. 3523 02:14:22,888 --> 02:14:26,124 IT WILL BE MOSTLY WOMEN AND IT'S 3524 02:14:26,191 --> 02:14:33,799 GO TO BE LIKE A LOW SCORE OF 3525 02:14:33,865 --> 02:14:38,069 ACTIVITY SO SLE OF 6 OR LESS, WE 3526 02:14:38,136 --> 02:14:40,071 SRO AN ACCRUAL OF 45 MISHTS WITH 3527 02:14:40,138 --> 02:14:41,339 THE PLAN TO COMPLETE 30. 3528 02:14:41,406 --> 02:14:42,674 OF COURSE NOT PREGNANT OR 3529 02:14:42,741 --> 02:14:43,575 LACTATES AND I SHOULD MENTION 3530 02:14:43,642 --> 02:14:44,776 BUT I DIDN'T PUT IN HIRE BECAUSE 3531 02:14:44,843 --> 02:14:46,211 WE DON'T KNOW WHO YOU ARE, BUT 3532 02:14:46,278 --> 02:14:47,712 APPROXIMATE YOU COME THROUGH US, 3533 02:14:47,779 --> 02:14:49,114 WE'RE GOING TO DO A VASCULAR 3534 02:14:49,181 --> 02:14:51,983 STUDY ON YOU TO SEE IF YOU'RE 3535 02:14:52,050 --> 02:14:53,652 ABNORMAL, IF YOU ARE ABNORMAL 3536 02:14:53,718 --> 02:14:54,820 YOU HEAR FROM US BECAUSE YOU'RE 3537 02:14:54,886 --> 02:15:05,230 THE PATIENT WE NEED. 3538 02:15:07,499 --> 02:15:09,267 THE WHAT IS ANIFROLUMAB, WE WILL 3539 02:15:09,334 --> 02:15:11,069 BE LOOKING AT WHAT ANIFROLUMAB 3540 02:15:11,136 --> 02:15:16,975 DOES IN A 2-1 RATIO SO WE WILL 3541 02:15:17,042 --> 02:15:22,347 HAVE 2 PATIENTS FOR EVERY 1 3542 02:15:22,414 --> 02:15:22,747 GETTING PLACEBO. 3543 02:15:22,814 --> 02:15:24,483 ANIFROLUMAB YOU MIGHT BE 3544 02:15:24,549 --> 02:15:25,450 WONDERING PARTICULARLY IF YOU'RE 3545 02:15:25,517 --> 02:15:27,519 A PATIENT, IT'S A MONOCLONAL 3546 02:15:27,586 --> 02:15:29,621 ANTIBODY THAT IS BINDING TO 3547 02:15:29,688 --> 02:15:30,789 BASICALLY AN INTERFERON RECEPTOR 3548 02:15:30,856 --> 02:15:35,861 SO WE CAN BLOCK THAT RECEPTOR. 3549 02:15:35,927 --> 02:15:37,996 SO WITH THE PLANS OF BLOCKING 3550 02:15:38,063 --> 02:15:39,531 THE INTERFERON SIGNALING AND 3551 02:15:39,598 --> 02:15:41,266 BLOCKING OF TYPE 1 INTERFERONS, 3552 02:15:41,333 --> 02:15:44,469 IT ALSO REDUCES THE CELL SURFACE 3553 02:15:44,536 --> 02:15:47,906 OF THE INTERFERON RECEPTOR WITH 3554 02:15:47,973 --> 02:15:50,442 THE HOPES OF DECREASING DOWN 3555 02:15:50,509 --> 02:15:53,845 STREAM INFLAMMATION AND 3556 02:15:53,912 --> 02:15:55,514 IMMUNOLOGIC PROCESSES RESULTS IN 3557 02:15:55,580 --> 02:15:58,950 HOPEFULLY DECREASED DEC ACTIVITY 3558 02:15:59,017 --> 02:15:59,885 AND [INDISCERNIBLE] AND WE 3559 02:15:59,951 --> 02:16:01,186 ALREADY KNOW AND I JUST 3560 02:16:01,253 --> 02:16:07,025 MENTIONED IT'S BEEN WELL 3561 02:16:07,092 --> 02:16:07,359 TOLERATED. 3562 02:16:07,425 --> 02:16:15,834 ALL RIGHT, THE WHERE, IT SOUNDS 3563 02:16:15,901 --> 02:16:17,769 SERIOUS FOR WHAT WE KNOW ABOUT 3564 02:16:17,836 --> 02:16:24,442 THIS DRUG BUT IF YOU'RE GOING TO 3565 02:16:24,509 --> 02:16:25,744 EXPERIENCE HEADACHE, JOINT PAIN, 3566 02:16:25,810 --> 02:16:27,112 VOMITING, I HAVEN'T SEEN ANY OF 3567 02:16:27,178 --> 02:16:28,747 THESE YET. 3568 02:16:28,813 --> 02:16:29,915 INFECTIONS, LOW GRADE INFECTIONS 3569 02:16:29,981 --> 02:16:31,583 IS WHAT WE HAVE SEEN IF THE PAST 3570 02:16:31,650 --> 02:16:34,219 AND THAT'S WITH WE EXPECT TO WE 3571 02:16:34,286 --> 02:16:36,354 WERE TO BE ANTICIPATORY, 3572 02:16:36,421 --> 02:16:37,522 MALIGNANCY ALWAYS REMAINED A 3573 02:16:37,589 --> 02:16:38,823 THEORETICAL CONCERN WITH THE 3574 02:16:38,890 --> 02:16:41,359 MEDICATIONS WE GIVE, HYPER 3575 02:16:41,426 --> 02:16:43,228 TENSATIVITY, IN ANAFLACTIC 3576 02:16:43,295 --> 02:16:47,365 REACTIONS OF COURSE ARE ALWAYS A 3577 02:16:47,432 --> 02:16:51,303 CONCERN WITH ANY DRUG, BUT 3578 02:16:51,369 --> 02:16:53,805 THERE'S A 3.3% INCIDENCE WITH A 3579 02:16:53,872 --> 02:16:57,576 DRUG VERSUS 0.8 WITH PLACEBO AND 3580 02:16:57,642 --> 02:16:58,143 PRIOR USE. 3581 02:16:58,209 --> 02:17:03,548 SO, ANYWAY, THE TAKE HOME POINT 3582 02:17:03,615 --> 02:17:05,717 IS MILD-MODERATE TYPE OF ISSUES 3583 02:17:05,784 --> 02:17:07,452 HAVE BEEN FOUND EMPLOY WE HAVE A 3584 02:17:07,519 --> 02:17:10,055 PROTOCOL PLAN IN PLACE WHERE 3585 02:17:10,121 --> 02:17:13,625 WE'RE NOT GOING TO PREMEDICATE 3586 02:17:13,692 --> 02:17:14,826 PATIENTS AS A ROUTINE. 3587 02:17:14,893 --> 02:17:16,661 IF A PATIENT EXPERIENCES 3588 02:17:16,728 --> 02:17:17,929 SOMETHING MILD TO MODERATE, WE 3589 02:17:17,996 --> 02:17:20,966 CAN GIVE THINGS LIKE 3590 02:17:21,032 --> 02:17:22,300 ANTIHISTAMINES OR SSIT MEN FIN 3591 02:17:22,367 --> 02:17:22,968 FOR THE PATIENT'S COMFORT. 3592 02:17:23,034 --> 02:17:28,306 IF YOU ARE A PATIENT WHO ENDS UP 3593 02:17:28,373 --> 02:17:29,240 HAVING ANAFLACTIC REAC, WE HAVE 3594 02:17:29,307 --> 02:17:30,976 A PROTOCOL IN PLACE, BUT THEN 3595 02:17:31,042 --> 02:17:31,910 YOU WILL BE WITHDRAWN BECAUSE 3596 02:17:31,977 --> 02:17:36,815 WE'RE NOT GOING TO EXPOSE TO YOU 3597 02:17:36,881 --> 02:17:37,616 ANY UNNECESSARY RISK. 3598 02:17:37,682 --> 02:17:40,385 THIS IS PROBABLY THE MOST 3599 02:17:40,452 --> 02:17:43,455 IMPORTANT SLIDE OF WHAT I'M 3600 02:17:43,521 --> 02:17:44,022 GETTING MYSELF INTO. 3601 02:17:44,089 --> 02:17:46,124 YOU WILL SEE ME, WHICH IS 3602 02:17:46,191 --> 02:17:47,425 PROBABLY THE BIGGEST DOWN SIDE 3603 02:17:47,492 --> 02:17:49,861 OF THE STUDY. 3604 02:17:49,928 --> 02:17:50,395 [LAUGHTER] 3605 02:17:50,462 --> 02:17:53,064 WE WILL SCREEN YOU UP IN OP9, 3606 02:17:53,131 --> 02:17:56,468 THAT IS OUR CLINIC. 3607 02:17:56,534 --> 02:17:57,669 YOU WILL GET VASCULAR STUDIES 3608 02:17:57,736 --> 02:18:00,505 AND THE PET CT. 3609 02:18:00,572 --> 02:18:02,140 ASSUMING YOU GET THROUGH THAT, 3610 02:18:02,207 --> 02:18:04,242 WE'RE GOING TO RANDOMIZE YOU IN 3611 02:18:04,309 --> 02:18:05,543 THE 2 TO 1 RATIO I MENTIONED AND 3612 02:18:05,610 --> 02:18:10,982 THEN YOU WILL GO ON A 7 MONTH 3613 02:18:11,049 --> 02:18:14,286 ODESSY OF GETTING A ONCE A MONTH 3614 02:18:14,352 --> 02:18:15,687 INFUSION THAT'S IN SOUTHWEST DAY 3615 02:18:15,754 --> 02:18:18,289 HOSPITAL, I KNOW LIKE MARIA 3616 02:18:18,356 --> 02:18:24,963 ESPINALL, KNOWS WHERE THAT'S 3617 02:18:25,030 --> 02:18:26,464 LOCATED, ANYWAY WE'LL GIVE YOU 3618 02:18:26,531 --> 02:18:27,999 AN INFUSION EVERY MONTH AND 3619 02:18:28,066 --> 02:18:29,768 WE'LL WRAP UP IN THE CLINIC 3620 02:18:29,834 --> 02:18:32,437 AGAIN WITH ANOTHER PET CT, 3621 02:18:32,504 --> 02:18:37,175 VASCULAR STUDIES, AND THAT WOULD 3622 02:18:37,242 --> 02:18:42,113 CONCLUDE THE STUDY. 3623 02:18:42,180 --> 02:18:44,082 OUR CONTACTS, THESE ARE THE--YOU 3624 02:18:44,149 --> 02:18:45,283 PROBABLY GOT ALL THESE NAMES 3625 02:18:45,350 --> 02:18:46,785 ALREADY, THE MAIN PERSON TO 3626 02:18:46,851 --> 02:18:56,227 REACH OUT TO BE WOULD BE LUBNA 3627 02:18:56,294 --> 02:18:58,763 HOODA, HERE E-MAIL AND PHONE 3628 02:18:58,830 --> 02:19:01,733 NUMBER ARE UP THERE BUT ANY OF 3629 02:19:01,800 --> 02:19:02,534 US ARE ACCESS CLINICAL 3630 02:19:02,600 --> 02:19:02,801 COMMUNITY. 3631 02:19:02,867 --> 02:19:04,636 I WANT TO SAY THANK YOU AND WE 3632 02:19:04,703 --> 02:19:06,538 LOVE THIS PICTURE APPARENTLY. 3633 02:19:06,604 --> 02:19:12,677 [LAUGHTER] 3634 02:19:12,744 --> 02:19:15,146 [ APPLAUSE ] 3635 02:19:15,213 --> 02:19:18,450 >> THANK YOU MIKE OUR NEXT 3636 02:19:18,516 --> 02:19:21,920 PRESENTERS ARE FROM #LUPUSCHAT, 3637 02:19:21,986 --> 02:19:23,722 MISS TIFFANY PETERSON AND FOUND 3638 02:19:23,788 --> 02:19:26,057 XER CEO OF AND THE HOST OF LUPUS 3639 02:19:26,124 --> 02:19:28,493 CHAT AND AS WELL AS KARLY 3640 02:19:28,560 --> 02:19:30,795 HARRISON, CHIEF RESEARCH AND 3641 02:19:30,862 --> 02:19:31,863 INNOVATION OFFICER AND CO-HOST 3642 02:19:31,930 --> 02:19:33,965 OF LUPUS CHAT AND THEY WILL BE 3643 02:19:34,032 --> 02:19:35,533 SPEAKING ON BUILDING RESIL YEBT 3644 02:19:35,600 --> 02:19:37,102 HEALTHCARE COMMUNITIES AND 3645 02:19:37,168 --> 02:19:37,836 ADDRESSING CHALLENGES AND 3646 02:19:37,902 --> 02:19:39,604 EMPOWERING PATES IN THE WAKE OF 3647 02:19:39,671 --> 02:19:42,407 THE PANDEMIC AND BEYOND. 3648 02:19:42,474 --> 02:19:52,384 PLEASE GIVE THEM A WARM WELCOME. 3649 02:19:52,450 --> 02:19:53,284 [ APPLAUSE ] 3650 02:19:53,351 --> 02:19:53,718 >> HI, INCH. 3651 02:19:53,785 --> 02:19:56,921 SO WE WOULD LIKE TO SHED SOME 3652 02:19:56,988 --> 02:19:58,556 LIGHT ON OUR PATIENT'S 3653 02:19:58,623 --> 02:19:59,724 COMMUNITIES NEEDS DURING THE PAN 3654 02:19:59,791 --> 02:20:01,960 DEMAND HOW WE ADDRESS THOSE 3655 02:20:02,026 --> 02:20:03,528 CHALLENGES WHILE EMPOWERING 3656 02:20:03,595 --> 02:20:04,796 PATIENTS THROUGHOUT THE DURATION 3657 02:20:04,863 --> 02:20:15,340 OF THE PANDEMIC AND BEYOND. 3658 02:20:19,377 --> 02:20:21,746 BESIDES MYSELF AND KARLY WE HAVE 3659 02:20:21,813 --> 02:20:23,314 2 OTHER LUPUS CHAT EXECUTIVE 3660 02:20:23,381 --> 02:20:28,586 TEAM MEMBERS CRYSTAL AND 3661 02:20:28,653 --> 02:20:28,853 ELIZABETH. 3662 02:20:28,920 --> 02:20:31,790 I KNOW YOU ARE TESTIMONY WITH 3663 02:20:31,856 --> 02:20:33,858 TWITTER AND ALTHOUGH IT HAS BEEN 3664 02:20:33,925 --> 02:20:37,462 GOING THROUGH SOME QUESTIONABLE 3665 02:20:37,529 --> 02:20:38,997 CHANGES, IT'S STULL A VITAL 3666 02:20:39,063 --> 02:20:41,833 SPACE FOR THE SHARING OF HEALTH 3667 02:20:41,900 --> 02:20:43,001 INFORMATION FOR OUR COMMUNITY. 3668 02:20:43,067 --> 02:20:44,068 SO IT'S REALLY IMPORTANT FOR US 3669 02:20:44,135 --> 02:20:49,507 TO MEET THEM WHERE THEY ARE. 3670 02:20:49,574 --> 02:20:52,544 WE INVITE LUPUS PATIENTS, CARE 3671 02:20:52,610 --> 02:20:53,545 PARTNERS, HEALTHCARE 3672 02:20:53,611 --> 02:20:54,612 PROFESSIONALS, RESEARCHERS AND 3673 02:20:54,679 --> 02:20:57,081 HEALTH INDUSTRY LEADERS TO JOIN 3674 02:20:57,148 --> 02:20:57,682 OUR CONVERSATION. 3675 02:20:57,749 --> 02:21:00,819 IT'S IMPORTANT FOR US TO DO OUR 3676 02:21:00,885 --> 02:21:01,519 PART TO DISPEL MISINFORMATION 3677 02:21:01,586 --> 02:21:04,155 AND MAKE SURE THAT WE'RE 3678 02:21:04,222 --> 02:21:09,360 PRIORITIZING INCREASING HEALTH 3679 02:21:09,427 --> 02:21:11,830 LITERACY. 3680 02:21:11,896 --> 02:21:13,264 IT WAS EXTREMELY IMPORTANT FOR 3681 02:21:13,331 --> 02:21:14,666 US TO BRING AWARE BUSINESS TO 3682 02:21:14,732 --> 02:21:16,301 THE SHORTAGE OF HYDROXY CHLOR O 3683 02:21:16,367 --> 02:21:17,936 QUINWHEN WE WERE FACING THAT 3684 02:21:18,002 --> 02:21:19,804 DURING THE ONSET OF COVID, IT 3685 02:21:19,871 --> 02:21:21,339 REALLY SPARKED A NEW REALITY FOR 3686 02:21:21,406 --> 02:21:23,174 MANY PATIENTS WHO BEGAN 3687 02:21:23,241 --> 02:21:24,275 RECEIVING NOTICE FROM THEIR 3688 02:21:24,342 --> 02:21:25,043 HEALTH PROVIDERS THAT THEY WERE 3689 02:21:25,109 --> 02:21:28,813 GOING TO BE LIMITED SUPPLY AND 3690 02:21:28,880 --> 02:21:31,049 THAT THEIR MEDICATIONS COULD 3691 02:21:31,115 --> 02:21:32,350 POSSIBLY BE STOPPED EMPLOY SO IT 3692 02:21:32,417 --> 02:21:33,518 WAS REALLY IMPORTANT FOR US TO 3693 02:21:33,585 --> 02:21:35,119 BRING THIS INFORMATION TO OUR 3694 02:21:35,186 --> 02:21:36,087 PATIENT COMMUNITY AND WE ASKED 3695 02:21:36,154 --> 02:21:39,224 THEM, YOU KNOW WHAT ARE SOME 3696 02:21:39,290 --> 02:21:40,458 ADVOCACY EFFORTS YOU'RE AWARE OF 3697 02:21:40,525 --> 02:21:42,894 AND THAT IS ADDRESSING THE 3698 02:21:42,961 --> 02:21:44,195 HYDROXY COLOR SHORTAGE FOR 3699 02:21:44,262 --> 02:21:45,697 PATIENTS AND WE ENCOURAGE THEM 3700 02:21:45,763 --> 02:21:48,032 TO GET A 90 DAY SUPPLY SO THAT 3701 02:21:48,099 --> 02:21:51,336 WAY THEY WOULDN'T BE ABLE TO GO 3702 02:21:51,402 --> 02:21:52,070 WITHOUT MEDICATION, WE FOUND OUT 3703 02:21:52,136 --> 02:21:54,706 THAT SOME OF OUR PATIENT 3704 02:21:54,772 --> 02:21:56,608 COMMUNITY MEMBERS WERE HALVING 3705 02:21:56,674 --> 02:21:59,177 THEIR DOSES ASK JUST HAVING 3706 02:21:59,244 --> 02:22:01,279 REALLY EXTREME DELAYS WITH THEIR 3707 02:22:01,346 --> 02:22:04,949 PHARMACY IN GETTING ACCESS TO 3708 02:22:05,016 --> 02:22:06,150 THESE MEDICATIONS. 3709 02:22:06,217 --> 02:22:07,919 THE LUPUS FOUNDATION DID--THE 3710 02:22:07,986 --> 02:22:09,320 LUPUS FOUNDATION OF AMERICA DID 3711 02:22:09,387 --> 02:22:12,190 LAUNCH A CAMPAIGN CALLED WITHOUT 3712 02:22:12,257 --> 02:22:14,192 MY HCQ, AND IT WAS REALLY 3713 02:22:14,259 --> 02:22:15,793 PIVOTAL IN GETTING PATIENTS 3714 02:22:15,860 --> 02:22:18,663 ACROSS THE GLOBE TO JUST SHARE 3715 02:22:18,730 --> 02:22:21,099 THEIR INFORMATION ABOUT WHAT THE 3716 02:22:21,165 --> 02:22:22,367 SHORTAGE OF HYDROXY CHLOR O 3717 02:22:22,433 --> 02:22:24,202 QUINWAS DOING TO THEM. 3718 02:22:24,269 --> 02:22:27,505 I WANT TO MOVE ON TO THE FACT 3719 02:22:27,572 --> 02:22:29,374 THAT WE PROVIDE SAFE SPACES FOR 3720 02:22:29,440 --> 02:22:31,576 MENTAL AND CERTAINLY--CERTAINLY 3721 02:22:31,643 --> 02:22:32,443 MOTIONAL WELLNESS. 3722 02:22:32,510 --> 02:22:37,248 WE FOUND IT REALLY CRUCIAL TO 3723 02:22:37,315 --> 02:22:39,217 PROVIDE SAFE SPACES AND FOSTER 3724 02:22:39,284 --> 02:22:40,051 CONVERSATIONS WITH OUR MEMBERS 3725 02:22:40,118 --> 02:22:41,619 WHO ARE FACING FURTHER ISOLATION 3726 02:22:41,686 --> 02:22:46,724 DUE TO LOCK DOWN, THEY WERE 3727 02:22:46,791 --> 02:22:47,659 EXPERIENCING RACIAL TRAUMS, 3728 02:22:47,725 --> 02:22:48,393 UNCERTAINTY, AND THE OVERALL 3729 02:22:48,459 --> 02:22:50,261 WEIGHT OF LIVING WITH A CHRONIC 3730 02:22:50,328 --> 02:22:51,296 ILLNESS WHILE TRIEFING TO 3731 02:22:51,362 --> 02:22:51,930 NAVIGATE LIFE. 3732 02:22:51,996 --> 02:22:54,365 WE RECEIVED A LOT OF FEEDBACK 3733 02:22:54,432 --> 02:22:56,334 FROM OUR COMMUNITY THAT OUR SAFE 3734 02:22:56,401 --> 02:22:57,936 SPACE AND PROVIDED WERE MUCH 3735 02:22:58,002 --> 02:23:00,238 APPRECIATED AND YOU CAN SEE IN 3736 02:23:00,305 --> 02:23:02,540 SOME OF THESE SPEECH BUBBLES 3737 02:23:02,607 --> 02:23:04,475 EXACTLY HOW SOME OF OUR 3738 02:23:04,542 --> 02:23:06,010 COMMUNITY MEMBERS FELT ABOUT US 3739 02:23:06,077 --> 02:23:07,178 PROVIDING THE SAFE SPACE WITH 3740 02:23:07,245 --> 02:23:13,351 THEM DURING SUCH A DIFFICULT 3741 02:23:13,418 --> 02:23:13,651 TIME. 3742 02:23:13,718 --> 02:23:15,420 SNORKS SO WHILE WE WERE 3743 02:23:15,486 --> 02:23:16,487 ATTEMPTING TO NAVIGATE THE 3744 02:23:16,554 --> 02:23:20,325 UNKNOWNS OF THE PANDEMIC, AS 3745 02:23:20,391 --> 02:23:22,560 WELL AS LIFE WITH CHRONIC 3746 02:23:22,627 --> 02:23:25,196 ILLNESS, WE ALSO FACED A RACIAL 3747 02:23:25,263 --> 02:23:28,499 UPRISING SPARKED BOO I CONTINUED 3748 02:23:28,566 --> 02:23:30,635 STATE SANCTIONED INJUST THE AND 3749 02:23:30,702 --> 02:23:32,804 SO WE FELT IT'S FORTUNATE 3750 02:23:32,870 --> 02:23:34,305 ADDRESS THAT DURING THAT TIME AS 3751 02:23:34,372 --> 02:23:36,441 WE DID SEE MANY PATIENTS WHO 3752 02:23:36,507 --> 02:23:37,809 WERE FEELING BURDENED AND 3753 02:23:37,875 --> 02:23:39,877 OVERWHELMED BY WHAT WAS GOING ON 3754 02:23:39,944 --> 02:23:42,814 AND NONE OF OUR ORGANIZATIONS 3755 02:23:42,880 --> 02:23:43,881 WERE ADDRESSING THE ISSUE AND 3756 02:23:43,948 --> 02:23:46,084 HOW IT COULD IMPACT US AS A 3757 02:23:46,150 --> 02:23:49,153 COMMUNITY AND ALSO IMPACT OUR 3758 02:23:49,220 --> 02:23:53,825 DISEASE ACTIVITY, AND SO, WE 3759 02:23:53,891 --> 02:23:54,759 FIRST RELEASED A STATEMENT AS 3760 02:23:54,826 --> 02:23:57,061 SEEN THERE AND THEN WE THOUGHT 3761 02:23:57,128 --> 02:24:00,598 IT IMPORTANT TO DISCUSS HOW 3762 02:24:00,665 --> 02:24:02,233 THESE THINGS IMPACTED, YOU KNOW 3763 02:24:02,300 --> 02:24:04,035 HEALTH DISPARITIES AND THINGS 3764 02:24:04,102 --> 02:24:04,535 LIKE THAT. 3765 02:24:04,602 --> 02:24:09,207 THERE WE ARE, AND SO, WE 3766 02:24:09,273 --> 02:24:11,843 PRESENTED AT ACR REGARDING 3767 02:24:11,909 --> 02:24:15,013 COVID-19 RACISM AND GENDER AND 3768 02:24:15,079 --> 02:24:16,381 DISCRIMINATION AND THE FUNCTION 3769 02:24:16,447 --> 02:24:19,417 OF STRESS ON WIDENING THE GAP IN 3770 02:24:19,484 --> 02:24:21,119 HEALTH DISPARITIES MUCH OF IT 3771 02:24:21,185 --> 02:24:23,788 SPEAKING TO DR. BOWIE'S POINT 3772 02:24:23,855 --> 02:24:26,090 EARLIER ABOUT HOW STRESS CAN 3773 02:24:26,157 --> 02:24:28,693 IMPACT DISEASE ACTIVITY, AS WELL 3774 02:24:28,760 --> 02:24:31,562 AS MENTAL HEALTH AND THINGS LIKE 3775 02:24:31,629 --> 02:24:31,796 THAT. 3776 02:24:31,863 --> 02:24:34,465 AND WORK TOWARD WIDENING THAT 3777 02:24:34,532 --> 02:24:35,833 HEALTH DISPARITY. 3778 02:24:35,900 --> 02:24:37,368 ANOTHER THING THAT WE DID AS A 3779 02:24:37,435 --> 02:24:41,305 COMMUNITY IS WE HOSTED CHAT 3780 02:24:41,372 --> 02:24:43,508 CO-HOST BY DR. BLAZER IN THE 3781 02:24:43,574 --> 02:24:45,243 AUDIENCE TODAY, WHERE WE DECIDED 3782 02:24:45,309 --> 02:24:48,212 TO SPEAK WITH OUR COMMUNITY 3783 02:24:48,279 --> 02:24:49,814 MEMBERS AND REALEY GET ENGAGED 3784 02:24:49,881 --> 02:24:51,682 AS TO SOME OF THE CHANGES WE CAN 3785 02:24:51,749 --> 02:24:53,184 MAKE WITHIN THE HEALTHCARE SPACE 3786 02:24:53,251 --> 02:24:56,387 AND SOCIETY AS A WHOLE TO TRY 3787 02:24:56,454 --> 02:24:58,556 AND LESSON HEALTH DISPARITIES 3788 02:24:58,623 --> 02:24:59,757 AND CLOSE THAT GAP AND YOU ALL 3789 02:24:59,824 --> 02:25:04,629 CAN SEE SOME OF THE RESPONSES OF 3790 02:25:04,695 --> 02:25:07,131 HOW PATIENTS AND PRACTITIONERS 3791 02:25:07,198 --> 02:25:11,769 ALIKE FELT THAT YOU KNOW WE AS A 3792 02:25:11,836 --> 02:25:12,937 COLLECTIVE COULD WORK TOWARD 3793 02:25:13,004 --> 02:25:18,709 CLOSING THE GAP IN HEALTH 3794 02:25:18,776 --> 02:25:19,110 DISPARITIES. 3795 02:25:19,177 --> 02:25:23,114 >> ONE OF THE OTHER THINGS THAT 3796 02:25:23,181 --> 02:25:24,849 WE FELT IMPORTANT BECAUSE HEALTH 3797 02:25:24,916 --> 02:25:26,017 LITERACY AS BEEN AT THE 3798 02:25:26,084 --> 02:25:27,985 FOREFRONT OF OUR MISSION SINCE 3799 02:25:28,052 --> 02:25:29,554 OUR INCEPTION, OVER THE LAST FEW 3800 02:25:29,620 --> 02:25:32,490 YEARS, WE'VE CONTINUED TO WORK 3801 02:25:32,557 --> 02:25:35,960 TO PROVIDE PATIENT EDUCATION AND 3802 02:25:36,027 --> 02:25:37,395 RESOURCES AROUND RESEARCH, 3803 02:25:37,462 --> 02:25:39,497 CLINICAL TRIALS, AND LUPUS AND 3804 02:25:39,564 --> 02:25:40,198 IT'S CO-MORBIDITIES. 3805 02:25:40,264 --> 02:25:41,699 SO 1 OF THE WAYS DURING THE LAST 3806 02:25:41,766 --> 02:25:44,235 FEW YEARS THAT WE DID THIS WAS 3807 02:25:44,302 --> 02:25:46,637 GETTING INVOLVED WITH THE 3808 02:25:46,704 --> 02:25:47,538 COVID-19 GLOBAL RHEUMATOLOGY 3809 02:25:47,605 --> 02:25:50,041 ALLIANCE WHICH MANY OF YOU MAY 3810 02:25:50,108 --> 02:25:52,677 BE FAMILIAR WITH WHO WAS A 3811 02:25:52,743 --> 02:25:54,078 COALITION BROUGHT TOGETHER 3812 02:25:54,145 --> 02:25:55,880 BETWEEN BOTH RHEUMATOLOGISTS AND 3813 02:25:55,947 --> 02:25:57,515 PATIENTS JUST OVER A GENERAL 3814 02:25:57,582 --> 02:25:59,117 TWITTER CONVERSATION 1 DAY, AS 3815 02:25:59,183 --> 02:26:01,385 THE PROJECTION NEURONS OR PIONS 3816 02:26:01,452 --> 02:26:03,454 DEMIC FIRST WAS IN THIS EARLY 3817 02:26:03,521 --> 02:26:04,422 STAGES AND PATIENTS WANTED TO 3818 02:26:04,489 --> 02:26:08,326 KNOW WHAT WAS GOING ON, 3819 02:26:08,392 --> 02:26:09,660 RESEARCHERS AND PRACTITIONERS 3820 02:26:09,727 --> 02:26:10,862 ALSO WERE IN NEED OF INFORMATION 3821 02:26:10,928 --> 02:26:16,033 AND SO WE DECIDED TO COME 3822 02:26:16,100 --> 02:26:17,935 TOGETHER AND AND REALLY IT WAS A 3823 02:26:18,002 --> 02:26:20,304 NOVEL IDEA OF GETTING THE 3824 02:26:20,371 --> 02:26:22,340 PATIENT VOICE FROM THE BOTTOM UP 3825 02:26:22,406 --> 02:26:27,979 AND SO, WE RELEASED A PATIENT 3826 02:26:28,045 --> 02:26:29,514 EXPERIENCE SURVEY, WE DID 2 3827 02:26:29,580 --> 02:26:30,581 ITERATIONS OF THAT THAT REALLY 3828 02:26:30,648 --> 02:26:33,317 SPOKE TO THE IMPACTS OF COVID ON 3829 02:26:33,384 --> 02:26:35,052 PATIENTS WITH RHEUMATIC DECS AND 3830 02:26:35,119 --> 02:26:37,688 FROM THAT AND EVERY OTHER 3831 02:26:37,755 --> 02:26:39,223 PUBLICATION WE HAD, WE ALSO 3832 02:26:39,290 --> 02:26:40,224 DEVELOPED LAY SUMMARIES ARE IF 3833 02:26:40,291 --> 02:26:43,060 PATIENTS SO THAT THEY WOULD BE 3834 02:26:43,127 --> 02:26:44,795 ABLE TO YOU KNOW RECEIVE THE 3835 02:26:44,862 --> 02:26:47,331 INFORMATION IN THE WAY THAT YOU 3836 02:26:47,398 --> 02:26:49,700 KNOW BEST WORKED FOR THEM AND 3837 02:26:49,767 --> 02:26:53,471 THEIR LEARNING STYLE SO THEY HAD 3838 02:26:53,538 --> 02:26:54,405 THE HIGHLY SCIENTIFIC VERSION 3839 02:26:54,472 --> 02:26:55,573 BUT THEN ALSO SOMETHING THAT PUT 3840 02:26:55,640 --> 02:26:58,476 IT IN LAY TERMS SO THAT THEY CAN 3841 02:26:58,543 --> 02:26:59,377 EASILY DIGEST THE INFORMATION 3842 02:26:59,443 --> 02:27:00,811 AND TO UNDERSTAND WHAT WAS GOING 3843 02:27:00,878 --> 02:27:03,347 ON AS FAR AS THE PANDEMIC AND 3844 02:27:03,414 --> 02:27:04,916 ALSO RESEARCH IN TERMS OF HOW IT 3845 02:27:04,982 --> 02:27:06,484 BEING IMPACT THEM AND THEIR 3846 02:27:06,551 --> 02:27:15,693 LUPUS AND OTHER RHEUMATIC 3847 02:27:15,760 --> 02:27:15,960 DISEASES. 3848 02:27:16,027 --> 02:27:17,094 AND SO 1 OF THE OTHER THINGS 3849 02:27:17,161 --> 02:27:20,464 THAT WE DID DO, WE HOSTED A CHAT 3850 02:27:20,531 --> 02:27:21,465 REGARDING LUPUS RESEARCH 3851 02:27:21,532 --> 02:27:26,771 MATTERS, THAT'S 1 OF OUR #S THAT 3852 02:27:26,837 --> 02:27:28,940 WE USUALLY USE DURING LUPUS 3853 02:27:29,006 --> 02:27:31,342 AWARENESS MONTH WITH 3854 02:27:31,409 --> 02:27:32,076 DR. RICHMOND FROM U-MASS MED 3855 02:27:32,143 --> 02:27:36,147 CENTER AND AS YOU CAN SEE, WE 3856 02:27:36,214 --> 02:27:37,782 COLLECTED SOME PATIENT FEEDBACK 3857 02:27:37,848 --> 02:27:40,751 ON WHAT THEY WOULD LIKE TO SEE 3858 02:27:40,818 --> 02:27:43,454 GOING FORWARD IN LUPUS RESEARCH 3859 02:27:43,521 --> 02:27:53,798 AND WHY IT WOULD BE IMPORTANT. 3860 02:27:53,864 --> 02:27:55,166 NON ENCOURAGING SELF-ADVOCACY, I 3861 02:27:55,233 --> 02:27:56,100 FEEL LIKE IT'S FORTUNATE 3862 02:27:56,167 --> 02:27:57,168 CHAMPION PATIENTS AND WE 3863 02:27:57,235 --> 02:27:57,868 ENCOURAGE THE COMMUNITY TO GET 3864 02:27:57,935 --> 02:27:59,737 ACT AND I HAVE ADVOCATE FOR 3865 02:27:59,804 --> 02:28:01,839 PROPER CARE, TREME, AND 3866 02:28:01,906 --> 02:28:03,674 EQUITABLE OPPORTUNITIES AND 3867 02:28:03,741 --> 02:28:05,142 HEALTHCARE AND BEYOND. 3868 02:28:05,209 --> 02:28:08,946 THIS IS AN EXAMPLE OF A 3869 02:28:09,013 --> 02:28:10,014 CONVERSATION THAT WE HAD 1 3870 02:28:10,081 --> 02:28:11,616 SUNDAY WITH SOME OF OUR 3871 02:28:11,682 --> 02:28:12,783 COMMUNITY MEMBERS AND JUST 3872 02:28:12,850 --> 02:28:14,518 ASKING THEM IN WHAT WAYS THAT WE 3873 02:28:14,585 --> 02:28:17,154 CAN IMPACT OUR OWN COMMUNITIES 3874 02:28:17,221 --> 02:28:18,356 BOTH LOCALLY AND GLOBALLY AND A 3875 02:28:18,422 --> 02:28:20,024 LOT OF THEM WERE TALKING ABOUT, 3876 02:28:20,091 --> 02:28:24,495 YOU KNOW SPEAKING UP ABOUT 3877 02:28:24,562 --> 02:28:24,996 HEALTHCARE DISPARITIES, 3878 02:28:25,062 --> 02:28:26,597 ADVOCATING FOR PATIENT 3879 02:28:26,664 --> 02:28:28,766 ENGAGEMENT RESEARCH, CONCEPTING 3880 02:28:28,833 --> 02:28:31,469 THEIR REPS, DURING DC ADVOCACY 3881 02:28:31,535 --> 02:28:37,375 DAYS, AND WE WANTED TO HIGHLIGHT 3882 02:28:37,441 --> 02:28:38,743 ELIZABETH SANTA CRUZ WHICH IS AN 3883 02:28:38,809 --> 02:28:40,611 EXECUTIVE MEMBER OF THE LUPUS 3884 02:28:40,678 --> 02:28:42,213 CHAT AND THE AMAZING WORK SHE 3885 02:28:42,280 --> 02:28:44,248 DOES IN NEW JERSEY EVERY YEAR 3886 02:28:44,315 --> 02:28:48,486 WITH HER RIBBON CEREMONY FOR 3887 02:28:48,552 --> 02:28:49,253 COMMEMORATING MAY'S LUPUS MONTH 3888 02:28:49,320 --> 02:28:56,627 IN THE STATE OF NEW JERSEY. 3889 02:28:56,694 --> 02:29:00,131 >> ALL RIGHT, SO AS IT SAYS WE 3890 02:29:00,197 --> 02:29:01,299 DO WELCOME THE OPPORTUNITY TO 3891 02:29:01,365 --> 02:29:02,533 SPEAK WITH EVERYONE REGARDING 3892 02:29:02,600 --> 02:29:05,136 COLLABORATIONS SO THAT WE CAN 3893 02:29:05,202 --> 02:29:07,872 STRENGTHEN THE TIES BETWEEN THE 3894 02:29:07,938 --> 02:29:09,940 PATIENT AND THE PRACTITIONER 3895 02:29:10,007 --> 02:29:10,408 COMMUNITY. 3896 02:29:10,474 --> 02:29:14,378 WE'RE EXSPECIALLY INTERESTED IN 3897 02:29:14,445 --> 02:29:20,618 ADDRESSING FATIGUE, HYDROXY 3898 02:29:20,685 --> 02:29:24,588 CHLOR O QUIN AND LUPUS RESEARCH 3899 02:29:24,655 --> 02:29:25,323 SO WE ENCOURAGE EVERYONE TO 3900 02:29:25,389 --> 02:29:26,490 REACH OUT IF YOU ARE INTERESTED 3901 02:29:26,557 --> 02:29:28,059 IN WORKING WITH US AND MAKING 3902 02:29:28,125 --> 02:29:33,431 THOSE CONNECTIONS WITH THE 3903 02:29:33,497 --> 02:29:33,864 PATIENT COMMUNITY. 3904 02:29:33,931 --> 02:29:39,770 [ APPLAUSE ] 3905 02:29:39,837 --> 02:29:42,206 >> THANK YOU KARL EXPE TIFFANY. 3906 02:29:42,273 --> 02:29:48,946 NEXT WE HAVE OUR LAST PATIENT 3907 02:29:49,013 --> 02:29:49,213 INTERVIEW. 3908 02:29:49,280 --> 02:29:52,583 MISS [INDISCERNIBLE] WILL BE 3909 02:29:52,650 --> 02:29:53,984 INTERVIEWING MISS MALLORY EMPLOY 3910 02:29:54,051 --> 02:29:58,989 PLEASE GIVE THEM A WARM WELCOME. 3911 02:29:59,056 --> 02:30:09,367 >> [ APPLAUSE ] 3912 02:30:24,081 --> 02:30:25,116 NHELLO, EVERYONE, THANK YOU FOR 3913 02:30:25,182 --> 02:30:27,718 JOINING US AND PATIENTLY WAITING 3914 02:30:27,785 --> 02:30:29,787 FOR US TO BE THE LAST 1. 3915 02:30:29,854 --> 02:30:30,855 THIS IS [INDISCERNIBLE]. 3916 02:30:30,921 --> 02:30:33,457 SHE IS 1 OF OUR NEW PATIENTS 3917 02:30:33,524 --> 02:30:36,594 THAT YOINED THE LUPUS PROGRAM. 3918 02:30:36,660 --> 02:30:37,962 >> USE YOUR MIC. 3919 02:30:38,028 --> 02:30:39,697 >> OH, SORRY. 3920 02:30:39,764 --> 02:30:40,464 NTHIS IS [INDISCERNIBLE]. 3921 02:30:40,531 --> 02:30:42,867 SHE JOINED US THE LAST LIKE 2 OR 3922 02:30:42,933 --> 02:30:44,535 3 YEARS AGO TO THE LUPUS PROGRAM 3923 02:30:44,602 --> 02:30:45,069 AS A PATIENT. 3924 02:30:45,136 --> 02:30:47,705 SO I WILL HAVE SOME QUESTIONS 3925 02:30:47,772 --> 02:30:50,908 FOR HER AND TO SHARE HER 3926 02:30:50,975 --> 02:30:51,208 EXPERIENCE. 3927 02:30:51,275 --> 02:30:57,715 WITH 3928 02:30:57,782 --> 02:31:01,419 OKAY, COULD YOU TELL US ABOUT 3929 02:31:01,485 --> 02:31:05,423 WHEN YOUR FIRST DIAGNOSED WITH 3930 02:31:05,489 --> 02:31:05,656 LUPUS? 3931 02:31:05,723 --> 02:31:06,924 >> YES, FIRST OFF THANK YOU FOR 3932 02:31:06,991 --> 02:31:12,163 HAVING ME HERE AND SO I WAS 3933 02:31:12,229 --> 02:31:12,963 INITIALLY DIAGNOSED IN 2019, 3934 02:31:13,030 --> 02:31:15,299 MARCH, I HAD JUST STARTED A NEW 3935 02:31:15,366 --> 02:31:17,601 JOB AND A FEW MONTHS LATE ARE I 3936 02:31:17,668 --> 02:31:19,170 END UP GETTING SICK, I THOUGHT 3937 02:31:19,236 --> 02:31:20,738 IT WAS THE FLU BUT I REALIZED IT 3938 02:31:20,805 --> 02:31:22,706 WAS A FLARE AND WAS SICK FOR 2 3939 02:31:22,773 --> 02:31:24,175 WEEKS AND HAD A CONSISTENT 3940 02:31:24,241 --> 02:31:25,743 HEADACHES AND I WENT TO A 3941 02:31:25,810 --> 02:31:28,712 NEUROLOGIST AND THEY HELPED TO 3942 02:31:28,779 --> 02:31:31,682 RUN AN A& A TEST WHICH CAME BACK 3943 02:31:31,749 --> 02:31:33,083 POSITIVE AND THEN AT A REFERRED 3944 02:31:33,150 --> 02:31:36,454 TO ME TO RAY RHEUMATOLOGIST AND 3945 02:31:36,520 --> 02:31:39,390 INITIALLY I WAS DIAGNOSED WITH A 3946 02:31:39,457 --> 02:31:40,724 TISSUE DISEASE BUT AFTER KIDNEY 3947 02:31:40,791 --> 02:31:42,259 BIOPSIES AND A COUPLE SECOND 3948 02:31:42,326 --> 02:31:43,928 OPINIONS IT WAS CLASSIFIED LUPUS 3949 02:31:43,994 --> 02:31:46,230 OF THE KIDNEYS AND THEN THEY 3950 02:31:46,297 --> 02:31:50,334 CHANGED MY DIAGNOSIS IN 3951 02:31:50,401 --> 02:31:51,202 JANUARY 2020 TO LUPUS. 3952 02:31:51,268 --> 02:31:55,573 >> YOU JOIN US IN 2021, RIGHT? 3953 02:31:55,639 --> 02:31:56,173 >> YES. 3954 02:31:56,240 --> 02:31:56,474 >> RIGHT. 3955 02:31:56,540 --> 02:32:00,244 >> HOW DID YOU HERE ABOUT NIH 3956 02:32:00,311 --> 02:32:01,445 AND YOU KNOW WHAT INTERESTED YOU 3957 02:32:01,512 --> 02:32:03,547 TO COME TO NIH? 3958 02:32:03,614 --> 02:32:04,615 >> SURE, SO ACTUALLY I WAS 3959 02:32:04,682 --> 02:32:06,016 TALKING TO A FAMILY FRIEND WHO 3960 02:32:06,083 --> 02:32:07,585 ACTUALLY WORKED AT THE NIH, AND 3961 02:32:07,651 --> 02:32:11,155 I WAS SHARING MY LUPUS STORY AND 3962 02:32:11,222 --> 02:32:12,323 SHE ENCOURAGED ME TO BECOME 3963 02:32:12,389 --> 02:32:13,724 INVOLVE WIDE SOME OF THE 3964 02:32:13,791 --> 02:32:16,227 CLINICAL TRIALS AND I WASN'T--I 3965 02:32:16,293 --> 02:32:17,828 HEARD ABOUT CLINICAL TRIALS BUT 3966 02:32:17,895 --> 02:32:19,530 I DIDN'T KNOW SO MUCH ABOUT IT 3967 02:32:19,597 --> 02:32:21,098 AND I DECIDED TO LOOK INTO IT, 3968 02:32:21,165 --> 02:32:22,633 DO MY OWN RESEARCH AND I DECIDED 3969 02:32:22,700 --> 02:32:25,269 TO REACH OUT AND I THINK I 3970 02:32:25,336 --> 02:32:28,239 INITIAL CONTACT WAS ELAINE AND 3971 02:32:28,305 --> 02:32:29,974 YOU KNOW AFTER OUR CONVERSATION, 3972 02:32:30,040 --> 02:32:31,375 I FELT REALLY COMFORTABLE TO GO 3973 02:32:31,442 --> 02:32:32,543 FORWARD AND THEN ANOTHER REASON 3974 02:32:32,610 --> 02:32:35,312 WHY I DECIDED TO GO FORWARD IS 3975 02:32:35,379 --> 02:32:36,480 BECAUSE I WENT HOME TO 3976 02:32:36,547 --> 02:32:38,449 PITTSBURGH XI WAS TALKING TO A 3977 02:32:38,516 --> 02:32:41,252 COUSIN AND I TOLD HIM I WAS 3978 02:32:41,318 --> 02:32:42,753 GOING TO BE INVOLVED IN A 3979 02:32:42,820 --> 02:32:44,321 CLINICAL TRIAL AND HIS RESPONSE 3980 02:32:44,388 --> 02:32:45,823 WAS, I QUOTE, YOU KNOW THEY'RE 3981 02:32:45,890 --> 02:32:48,726 GOING TO USE YOUR DNA FOR AN 3982 02:32:48,792 --> 02:32:49,660 UNSOLVED MURDER MYSTERY. 3983 02:32:49,727 --> 02:32:51,395 SO MY ANXIETY KICKED IN, I WAS 3984 02:32:51,462 --> 02:32:52,830 LIKE WAY, ARE THEY IN BUT THEN, 3985 02:32:52,897 --> 02:32:56,200 YOU KNOW IN ALL SERIOUSNESS, YOU 3986 02:32:56,267 --> 02:32:58,135 KNOW MAYBE NOT FOR THE EXTREME, 3987 02:32:58,202 --> 02:32:59,303 BUT THERE ARE SOME PEOPLE WHO 3988 02:32:59,370 --> 02:33:02,606 FILL THAT WAY, AND I THOUGHT 3989 02:33:02,673 --> 02:33:04,675 ABOUT HOW MANY PEOPLE OF COLOR 3990 02:33:04,742 --> 02:33:05,509 WHO HAVE LUPUS MODEL CITIZEN 3991 02:33:05,576 --> 02:33:09,847 MAYBE THINK THAT WAY, MAYBE NOT 3992 02:33:09,914 --> 02:33:11,916 TO THAT EXTENT AND AS A PATIENT 3993 02:33:11,982 --> 02:33:13,350 AND ADVOCATE MY YOB CORPS IS TO 3994 02:33:13,417 --> 02:33:14,318 LEARN, INFORM AND EDUCATE AND 3995 02:33:14,385 --> 02:33:15,953 THE BEST WAY IS TO DO THAT 3996 02:33:16,020 --> 02:33:17,888 THROUGH SHARED EXPERIENCE AND 3997 02:33:17,955 --> 02:33:19,723 SO, IF I CAN CONTRIBUTE TO 3998 02:33:19,790 --> 02:33:20,824 CHANGE IN THE NARRATIVE, THAT 3999 02:33:20,891 --> 02:33:26,130 WAS 1 OF THE REASONS WHY. 4000 02:33:26,196 --> 02:33:29,767 >> YES, KEY TO TELL THAT STORY 4001 02:33:29,833 --> 02:33:30,601 SO YOUAR TIS PARTICIPATE IN A 4002 02:33:30,668 --> 02:33:32,002 TRIALED IN THE COVID STUDY AND 4003 02:33:32,069 --> 02:33:34,838 VASCULAR STUDY HERE WITH US WHAT 4004 02:33:34,905 --> 02:33:38,042 INTERESTS YOU EARLY DUE TO 4005 02:33:38,108 --> 02:33:39,443 PARTICIPATE IF THIS CLINICAL 4006 02:33:39,510 --> 02:33:40,144 RESEARCH STUDY. 4007 02:33:40,210 --> 02:33:45,916 >> THAT'S EASY, WHEN I INITIALLY 4008 02:33:45,983 --> 02:33:47,985 SIGNED UP I TOLD ELAINE I WAS 4009 02:33:48,052 --> 02:33:49,053 INTERESTED AND OPEN TO TRIALS 4010 02:33:49,119 --> 02:33:51,055 THAT I WAS A CANDIDATE FOR, SO 4011 02:33:51,121 --> 02:33:53,123 WHEN THESE TRIALS CAME UP IT WAS 4012 02:33:53,190 --> 02:33:54,959 AN AUTOMATIC YES FOR ME. 4013 02:33:55,025 --> 02:33:56,527 >> THANK YOU FOR PARTICIPATING 4014 02:33:56,594 --> 02:33:57,661 BECAUSE YOUR PARTICIPATION MAKES 4015 02:33:57,728 --> 02:33:59,296 A DIFFERENCE AND AS SENCH 4016 02:33:59,363 --> 02:34:01,498 SPEAKING DIVERSITY IS A KEY FOR 4017 02:34:01,565 --> 02:34:05,336 BETTER TREATMENT AND BETTER 4018 02:34:05,402 --> 02:34:06,737 OUTCOMES, SO CONTRIBUTION IS 4019 02:34:06,804 --> 02:34:07,738 VERY IMPORTANT IN THIS RESEARCH 4020 02:34:07,805 --> 02:34:10,608 STUDY SPACE WE HAVE HERE AT NIH 4021 02:34:10,674 --> 02:34:11,542 AND EVEN OUTSIDE. 4022 02:34:11,609 --> 02:34:14,345 SO I KNOW YOU PART OF THE 4023 02:34:14,411 --> 02:34:15,512 AUTOIMMUNE ASSOCIATION NONPROFIT 4024 02:34:15,579 --> 02:34:17,448 ORGANIZATION, IS THERE ANYTHING 4025 02:34:17,514 --> 02:34:20,417 YOU WANT TO SHARE WITH OUR 4026 02:34:20,484 --> 02:34:22,252 AUDIENCE, YES, I HAD SEEN THE 4027 02:34:22,319 --> 02:34:24,221 PEASHT ADVOCACY WORK WITH THEM 4028 02:34:24,288 --> 02:34:26,457 AND THEIR NONPROFIT ORGANIZATION 4029 02:34:26,523 --> 02:34:28,425 THAT FOCUSES ON AUTOIMMUNE 4030 02:34:28,492 --> 02:34:29,693 AWARENESS RESEARCH EDUCATION AND 4031 02:34:29,760 --> 02:34:32,396 EFFICACY AND I'VE BEEN A PART OF 4032 02:34:32,463 --> 02:34:33,664 THEIR DEI INITIATIVE AND THEY 4033 02:34:33,731 --> 02:34:36,300 HAVE GIVEN ME THE PLATFORM TO 4034 02:34:36,367 --> 02:34:37,534 SHARE MY EXPERIENCES WITH 4035 02:34:37,601 --> 02:34:39,637 CLINICAL TRIALS WITH THE NIH 4036 02:34:39,703 --> 02:34:42,206 BECAUSE WE KNOW AGAIN, LIKE 4037 02:34:42,272 --> 02:34:42,840 REPRESENTATION IS IMPORTANT. 4038 02:34:42,906 --> 02:34:44,274 AND SO I'VE HAD THE OPPORTUNITY 4039 02:34:44,341 --> 02:34:47,911 TO HAVE A SUM AND IT WE HAD A 4040 02:34:47,978 --> 02:34:49,146 WHOLE SESSION JUST FOR CLINICAL 4041 02:34:49,213 --> 02:34:51,882 TRIALS AND JUST TRYING TO 4042 02:34:51,949 --> 02:34:53,050 EDUCATE PEOPLE, MAINLY PEOPLE OF 4043 02:34:53,117 --> 02:34:54,418 COLOR AND JUST KIND OF DISPEL 4044 02:34:54,485 --> 02:34:56,687 SOME OF THE MYTHS THAT'S 4045 02:34:56,754 --> 02:34:58,522 ASSOCIATE WIDE CLINICAL TRIALS. 4046 02:34:58,589 --> 02:35:00,190 NYES, YES, YES, YEAH, THAT'S 4047 02:35:00,257 --> 02:35:00,391 GOOD. 4048 02:35:00,457 --> 02:35:03,394 SO HOW WOULD YOU SUMMARIZE YOUR 4049 02:35:03,460 --> 02:35:05,095 OVERALL EXPERIENCE WITH NIH AND 4050 02:35:05,162 --> 02:35:07,431 IS THERE ANYTHING YOU WOULD LIKE 4051 02:35:07,498 --> 02:35:08,699 PEOPLE TO KNOW? 4052 02:35:08,766 --> 02:35:12,036 >> YEAH, I HAVE NOT HAD A 4053 02:35:12,102 --> 02:35:12,803 NEGATIVE EXPERIENCE. 4054 02:35:12,870 --> 02:35:15,539 LIKE YOU SAID I'M FAIRLY NEW A 4055 02:35:15,606 --> 02:35:17,508 FEW YEARS, AND YOU KNOW I LOVE 4056 02:35:17,574 --> 02:35:19,643 THAT IT'S FLEXIBLE, I LOVE THAT 4057 02:35:19,710 --> 02:35:22,112 1 OF THE THINGS THAT I WASN'T 4058 02:35:22,179 --> 02:35:23,547 AWARE OF IS IT'S THOT SOMETHING 4059 02:35:23,614 --> 02:35:25,282 THAT YOU HAVE TO CONTINUE, AND 4060 02:35:25,349 --> 02:35:27,084 SO WHEN I ENCOURAGE PEOPLE TO 4061 02:35:27,151 --> 02:35:28,152 DO, CLINICAL TRIALS, I TELL 4062 02:35:28,218 --> 02:35:29,920 THEM, YOU KNOW YOU DON'T HAVE TO 4063 02:35:29,987 --> 02:35:31,555 SIGN A CONTRACT, IF YOU'RE IN IT 4064 02:35:31,622 --> 02:35:33,290 FOR 3 MONTHS AND DECIDE YOU WANT 4065 02:35:33,357 --> 02:35:34,958 TO STOP, LIKE YOU CAN. 4066 02:35:35,025 --> 02:35:37,127 AND THEN ALSO, WHEN I TRY TO 4067 02:35:37,194 --> 02:35:38,796 TELL PEOPLE, THE BENEFITS OF A 4068 02:35:38,862 --> 02:35:39,763 CLINICAL TRIAL, YOU KNOW THERE 4069 02:35:39,830 --> 02:35:42,166 ARE SOME PATIENTS WHO MAY NOT 4070 02:35:42,232 --> 02:35:45,703 HAVE HEALTHCARE OR ACCESS TO 4071 02:35:45,769 --> 02:35:47,638 ADEQUATE HEALTHCARE, OTHER THAN 4072 02:35:47,705 --> 02:35:50,140 IT BEING ANOTHER PAIR OF EYES, 4073 02:35:50,207 --> 02:35:54,044 OR ANOTHER OPINION REGARDING 4074 02:35:54,111 --> 02:35:56,146 YOUR--REGARDING YOUR DISEASE, 4075 02:35:56,213 --> 02:35:58,082 YOU KNOW, YOU DON'T HAVE TO HAVE 4076 02:35:58,148 --> 02:35:59,817 INSURANCE, I REMEMBER, LAST 4077 02:35:59,883 --> 02:36:02,119 YEAR, MY HUSBAND LAST HIS JOB, 4078 02:36:02,186 --> 02:36:04,888 HE'S IN THE IT FIELD AND WE WENT 4079 02:36:04,955 --> 02:36:05,923 THROUGH MONTHS WITHOUT INSURANCE 4080 02:36:05,989 --> 02:36:07,591 BUT I WAS STILL ABLE TO MEET 4081 02:36:07,658 --> 02:36:09,693 WITH MY LUPUS DOCTOR HERE, GET 4082 02:36:09,760 --> 02:36:11,995 MY LABS DRAWN HERE AND I THINK 4083 02:36:12,062 --> 02:36:13,230 THAT'S A HUGE BENEFIT. 4084 02:36:13,297 --> 02:36:14,565 SO YEAH, I HAVE NO COMPLAINTS 4085 02:36:14,631 --> 02:36:16,133 AND I'M GLAD THAT I TARTED WHEN 4086 02:36:16,200 --> 02:36:17,668 I DID, YOU KNOW EARLY IN MY 4087 02:36:17,735 --> 02:36:20,237 DIAGNOSIS AND I LOOK FORWARD TO 4088 02:36:20,304 --> 02:36:21,438 CONTINUING THE JOURNEY. 4089 02:36:21,505 --> 02:36:21,972 >> THANK YOU. 4090 02:36:22,039 --> 02:36:25,809 THANK YOU FOR SHARING WITH US 4091 02:36:25,876 --> 02:36:27,911 YOUR STORIES AND ANYONE HAVE ANY 4092 02:36:27,978 --> 02:36:34,318 QUESTIONS FOR HER? 4093 02:36:34,384 --> 02:36:34,918 ALL RIGHT. 4094 02:36:34,985 --> 02:36:38,889 THANK YOU VERY MUCH, EVERYONE. 4095 02:36:38,956 --> 02:36:39,256 >> THANK YOU. 4096 02:36:39,323 --> 02:36:43,927 [ APPLAUSE ] 4097 02:36:43,994 --> 02:36:44,561 >> THANK YOU. 4098 02:36:44,628 --> 02:36:47,397 OKAY, LAST I WOULD LIKE TO 4099 02:36:47,464 --> 02:36:50,334 INVITE DR. HASNI BACK UP FOR 4100 02:36:50,400 --> 02:36:51,835 CLOSING REMARKS. 4101 02:36:51,902 --> 02:36:53,504 >> ALL RIGHT, SO THANK YOU 4102 02:36:53,570 --> 02:36:54,872 EVERYONE FOR STAYING THROUGH AND 4103 02:36:54,938 --> 02:36:57,174 I KNOW IT HAS BEEN A BUSY 4104 02:36:57,241 --> 02:36:59,243 MORNING AND YOU'VE HEARD A LOT 4105 02:36:59,309 --> 02:37:02,446 OF THINGS FROM THE RESEARCHERS 4106 02:37:02,513 --> 02:37:03,881 FROM THE PATIENTS, SO THANK YOU 4107 02:37:03,947 --> 02:37:05,949 ALL FOR COMING AND STAYING WITH 4108 02:37:06,016 --> 02:37:08,786 US AND WE WILL CONTINUE THIS 4109 02:37:08,852 --> 02:37:11,054 JOURNEY TOGETHER, COLLABORATE 4110 02:37:11,121 --> 02:37:13,423 AND DO MORE AND MORE STRONGER, 4111 02:37:13,490 --> 02:37:14,992 MORE STRONGER, MORE BETTER 4112 02:37:15,058 --> 02:37:15,726 THINGS. 4113 02:37:15,793 --> 02:37:16,994 WE HAVE PATIENT ADVOCACY PEOPLE 4114 02:37:17,060 --> 02:37:20,063 HERE, YOU KNOW SO EVERYONE 4115 02:37:20,130 --> 02:37:22,232 TOGETHER, WE HAVE TO WORK 4116 02:37:22,299 --> 02:37:24,168 TOGETHER AND YOU KNOW DO MORE 4117 02:37:24,234 --> 02:37:28,639 BETTER THINGS AND A BRIGHTER 4118 02:37:28,705 --> 02:37:28,872 FUTURE. 4119 02:37:28,939 --> 02:37:30,674 I WANT TO THANK THE VOLUNTEERS 4120 02:37:30,741 --> 02:37:33,710 AGAIN AND I ALSO WANT TO THANK 4121 02:37:33,777 --> 02:37:35,045 THE NIAMS LEADERSHIP, 4122 02:37:35,112 --> 02:37:36,313 DR. COLBERT HAS BEEN AT AING 4123 02:37:36,380 --> 02:37:38,315 THROUGH ALL, I KNOW HE'S SO BUSY 4124 02:37:38,382 --> 02:37:40,384 BUT DESPITE HIS BUSY SCHEDULE HE 4125 02:37:40,450 --> 02:37:44,788 STAYED HERE AND DR. KAPLAN OF 4126 02:37:44,855 --> 02:37:45,956 COURSE, DR. CRISWELL HAS TO 4127 02:37:46,023 --> 02:37:47,624 LEAVE A LITTLE EARLY BUT ALL THE 4128 02:37:47,691 --> 02:37:49,293 UNWAVERING SUPPORT OF THE 4129 02:37:49,359 --> 02:37:51,695 LEADERSHIP HAS HELPED US BUILD 4130 02:37:51,762 --> 02:37:54,565 THE PROGRAM TO THIS POINT. 4131 02:37:54,631 ALL PATIENTS HERE