1 00:00:04,319 --> 00:00:07,299 Welcome to Boundless Bee, the Hemophilia Bee podcast. 2 00:00:07,519 --> 00:00:09,759 The podcast standing with you from a family 3 00:00:09,759 --> 00:00:12,580 like yours, presented by the Coalition for Hemophilia 4 00:00:12,799 --> 00:00:15,460 Bee and in partnership with Balancing Life's Issues. 5 00:00:16,065 --> 00:00:17,824 In part one of our interview with Dana 6 00:00:17,824 --> 00:00:20,004 Kyun, you heard how a single factor infusion 7 00:00:20,144 --> 00:00:21,364 in 1983 8 00:00:21,425 --> 00:00:23,585 set Dana's life on a path shaped by 9 00:00:23,585 --> 00:00:27,105 survival, stigma, and devastating loss, and how grief 10 00:00:27,105 --> 00:00:28,484 eventually became fuel. 11 00:00:29,000 --> 00:00:30,920 Today in part two, we follow what happened 12 00:00:30,920 --> 00:00:33,799 next. How Dana's relentless advocacy helped force a 13 00:00:33,799 --> 00:00:36,840 national reckoning over blood safety. How that pressure 14 00:00:36,840 --> 00:00:39,640 contributed to real infrastructure and oversight, and why 15 00:00:39,640 --> 00:00:41,774 Dana is stepping back into this fight now. 16 00:00:41,774 --> 00:00:44,174 Because the guardrails built from tragedy can be 17 00:00:44,174 --> 00:00:47,375 weakened faster than people realize. For Dana, blood 18 00:00:47,375 --> 00:00:49,614 safety is a promise we either keep or 19 00:00:49,614 --> 00:00:50,274 we break. 20 00:00:51,215 --> 00:00:53,854 Well, after moving to Richmond, Virginia with the 21 00:00:53,854 --> 00:00:57,219 children and helping them emotionally and and my 22 00:00:57,219 --> 00:01:00,179 parents helping us emotionally and mentally go through 23 00:01:00,179 --> 00:01:02,200 all this this transition 24 00:01:02,659 --> 00:01:04,180 and learning how to live with all of 25 00:01:04,180 --> 00:01:05,700 this. I ended up getting the job in 26 00:01:05,700 --> 00:01:07,939 the hospital as a clinical counselor, and I 27 00:01:07,939 --> 00:01:11,525 was counseling people with with HIV AIDS and 28 00:01:11,525 --> 00:01:12,504 people with hemophilia 29 00:01:12,965 --> 00:01:15,305 who had turned HIV positive. 30 00:01:15,765 --> 00:01:19,144 Who who better than to identify and empathize 31 00:01:19,444 --> 00:01:22,025 and counsel people with HIV 32 00:01:22,520 --> 00:01:25,000 than someone who's been through it themselves. It 33 00:01:25,000 --> 00:01:26,780 was all kept discreet, 34 00:01:27,240 --> 00:01:29,719 and no one revealed that because, again, it 35 00:01:29,719 --> 00:01:31,880 was at a time that most people were 36 00:01:31,880 --> 00:01:33,420 being discriminated against. 37 00:01:33,799 --> 00:01:36,120 Dana is naming something that defined that era. 38 00:01:36,120 --> 00:01:38,334 You weren't just managing a diagnosis. You were 39 00:01:38,334 --> 00:01:39,774 managing how the world might treat you if 40 00:01:39,774 --> 00:01:41,774 they found out. In the late eighties and 41 00:01:41,774 --> 00:01:44,174 early nineties, people living with HIV were still 42 00:01:44,174 --> 00:01:47,215 being refused jobs, isolated in schools, and treated 43 00:01:47,215 --> 00:01:49,155 like a threat instead of a human being. 44 00:01:49,215 --> 00:01:51,555 And for families in the bleeding disorders community, 45 00:01:51,614 --> 00:01:54,620 the stigma could attach to everyone, spouses, kids, 46 00:01:54,760 --> 00:01:55,579 even caregivers. 47 00:01:56,200 --> 00:01:58,280 So Dana did counseling work inside a quiet 48 00:01:58,280 --> 00:02:01,079 reality. You help people survive while trying not 49 00:02:01,079 --> 00:02:03,240 to become a target. And then a box 50 00:02:03,240 --> 00:02:05,560 of documents changed everything. But the turning point 51 00:02:05,560 --> 00:02:07,000 for me is when I went to work 52 00:02:07,000 --> 00:02:10,365 there, doctor Lyman Fisher, who was a pathologist, 53 00:02:10,504 --> 00:02:11,564 but he was the hematologist 54 00:02:11,944 --> 00:02:14,205 too for the clinic there for hemophilia, 55 00:02:14,824 --> 00:02:16,985 he had he was a pack rat. He 56 00:02:16,985 --> 00:02:18,844 caved every document imaginable, 57 00:02:19,465 --> 00:02:22,584 everyone. And so he said, I have this 58 00:02:22,584 --> 00:02:24,760 box I'm gonna bring over to your office, 59 00:02:24,760 --> 00:02:26,360 and I want you to learn everything you 60 00:02:26,360 --> 00:02:27,800 can. He was my boss, and he said, 61 00:02:27,800 --> 00:02:30,040 learn everything you can about this. And here 62 00:02:30,040 --> 00:02:32,860 are all memos and things that came from 63 00:02:32,919 --> 00:02:33,419 NHF 64 00:02:33,719 --> 00:02:36,665 and came from CDC. He'd read them and 65 00:02:36,665 --> 00:02:38,344 learn about them. It might help you with 66 00:02:38,344 --> 00:02:40,205 the counseling of people with HIV. 67 00:02:40,504 --> 00:02:42,844 And as I started to 68 00:02:43,145 --> 00:02:46,125 spend time putting them in order and documenting 69 00:02:46,425 --> 00:02:48,585 them and know, I was looking at a 70 00:02:48,585 --> 00:02:50,610 sequence here, but there 71 00:02:50,909 --> 00:02:51,569 was surveillance 72 00:02:52,349 --> 00:02:54,370 study that was put out by the CDC 73 00:02:54,590 --> 00:02:56,849 and NHF in 1982 74 00:02:57,150 --> 00:02:58,689 and it where they were collecting 75 00:02:58,990 --> 00:03:02,050 blood samples and they were testing for HTLV 76 00:03:02,430 --> 00:03:02,930 three 77 00:03:03,355 --> 00:03:05,594 which is the beginning or what they first 78 00:03:05,594 --> 00:03:06,575 called HIV, 79 00:03:07,034 --> 00:03:07,855 lab results, 80 00:03:08,395 --> 00:03:11,615 lab markers, everything, and I saw that survey. 81 00:03:11,915 --> 00:03:14,495 This was a survey conducted in 1982, 82 00:03:14,635 --> 00:03:17,455 shortly before his accident and consequential transfusion, 83 00:03:17,840 --> 00:03:19,919 leaving him with HIV, which led to the 84 00:03:19,919 --> 00:03:20,900 death of his wife. 85 00:03:21,280 --> 00:03:23,379 From this box, Dana expected education, 86 00:03:23,759 --> 00:03:26,259 material that might help him support patients emotionally. 87 00:03:26,479 --> 00:03:26,979 Instead, 88 00:03:27,280 --> 00:03:29,360 he found the beginning of a timeline, a 89 00:03:29,360 --> 00:03:29,775 pattern. 90 00:03:30,334 --> 00:03:33,294 Signals that suggested concern existed earlier than many 91 00:03:33,294 --> 00:03:35,375 families were ever told, and that what happened 92 00:03:35,375 --> 00:03:37,854 to the bleeding disorders community wasn't just bad 93 00:03:37,854 --> 00:03:40,574 luck. It was a system making decisions while 94 00:03:40,574 --> 00:03:43,310 people paid the price. And I started to 95 00:03:43,310 --> 00:03:46,509 get a fire inside me and thinking this 96 00:03:46,509 --> 00:03:48,129 should never have happened. 97 00:03:48,430 --> 00:03:50,289 What were people thinking? 98 00:03:50,669 --> 00:03:53,629 What were people doing? Were they ignoring the 99 00:03:53,629 --> 00:03:56,004 signs of what was going on? And that's 100 00:03:56,004 --> 00:03:58,805 when I be I became angry at things. 101 00:03:59,125 --> 00:04:01,364 I had to get myself calm. I think, 102 00:04:01,364 --> 00:04:03,705 you know, not to lose it. So 103 00:04:04,405 --> 00:04:06,805 believe it or not, I I just started 104 00:04:06,805 --> 00:04:08,659 praying about things and I said, you know, 105 00:04:08,659 --> 00:04:10,840 I've lost what I love to do, ministry. 106 00:04:11,219 --> 00:04:13,620 And I and I I said, okay, God. 107 00:04:13,620 --> 00:04:14,919 That didn't seem fair 108 00:04:15,219 --> 00:04:16,899 in my life of all the things that 109 00:04:16,899 --> 00:04:19,139 happened in my children's life. And now I'm 110 00:04:19,139 --> 00:04:21,975 looking at this and it was basically some, 111 00:04:22,214 --> 00:04:23,975 like, something came to me and said, well, 112 00:04:23,975 --> 00:04:25,735 you got a new mission here. I had 113 00:04:25,735 --> 00:04:27,415 a fire in my belly, you know. And 114 00:04:27,415 --> 00:04:29,175 I had to figure out what what who 115 00:04:29,175 --> 00:04:30,855 knew what went. And I need to get 116 00:04:30,855 --> 00:04:32,615 down to the bottom of this. As Dana 117 00:04:32,615 --> 00:04:34,615 got closer and closer to the sources of 118 00:04:34,615 --> 00:04:37,274 the information, he understood the conflict of interest 119 00:04:37,709 --> 00:04:40,769 concerning organizations like the National Hemophilia Foundation. 120 00:04:41,389 --> 00:04:43,470 Dana was associated with the NHF through his 121 00:04:43,470 --> 00:04:46,209 work helping HIV infected hemophilia patients. 122 00:04:46,509 --> 00:04:48,350 Knowing that he couldn't necessarily call them out 123 00:04:48,350 --> 00:04:50,444 yet and expect help from them, he began 124 00:04:50,444 --> 00:04:52,605 looking outside to other activists who are on 125 00:04:52,605 --> 00:04:54,365 their own paths getting to the bottom of 126 00:04:54,365 --> 00:04:55,185 what had happened. 127 00:04:55,564 --> 00:04:57,324 That's when he learned about a professor named 128 00:04:57,324 --> 00:04:59,024 Michael Rosenberg in California. 129 00:04:59,485 --> 00:05:01,245 Michael had a newsletter that he was putting 130 00:05:01,245 --> 00:05:03,104 out about hemophilia and HIV 131 00:05:03,470 --> 00:05:05,550 and was also questioning who knew what and 132 00:05:05,550 --> 00:05:08,030 when and outright accusing the NHF of what 133 00:05:08,030 --> 00:05:09,949 they did and didn't know. So Dana decided 134 00:05:09,949 --> 00:05:10,910 to give him a call. He was a 135 00:05:10,910 --> 00:05:13,389 little hesitant to talk to me because he 136 00:05:13,389 --> 00:05:15,790 thought I was from the National Hemophilia Foundation. 137 00:05:15,790 --> 00:05:18,214 I said, no. I work at a treatment 138 00:05:18,214 --> 00:05:21,035 center. I am involved with NHF and helping 139 00:05:21,335 --> 00:05:24,314 people and counseling people through HIV infections. 140 00:05:24,694 --> 00:05:26,455 But I said, I'm seeing things that I 141 00:05:26,455 --> 00:05:28,535 don't like to see here and I, I 142 00:05:28,535 --> 00:05:30,295 need to ask, talk to someone about it 143 00:05:30,295 --> 00:05:32,569 because I think someone did something wrong. And 144 00:05:32,569 --> 00:05:35,290 so he and I became close friends and 145 00:05:35,290 --> 00:05:37,850 we shared documents and he challenged me to 146 00:05:37,850 --> 00:05:40,889 petition the government for Freedom of Information Act. 147 00:05:40,889 --> 00:05:43,449 And I was asking CDC, VA, public health 148 00:05:43,449 --> 00:05:44,430 system, HHS, 149 00:05:44,730 --> 00:05:45,230 everybody 150 00:05:45,610 --> 00:05:47,870 for documents as I learned about them. 151 00:05:48,245 --> 00:05:51,125 That's when I came to a place where 152 00:05:51,125 --> 00:05:52,104 I had them 153 00:05:52,404 --> 00:05:54,664 sitting all out on my living room floor. 154 00:05:54,724 --> 00:05:56,644 All of these documents. And this is the 155 00:05:56,644 --> 00:05:59,064 moment where advocacy turned into an investigation. 156 00:05:59,604 --> 00:06:01,764 Dana wasn't only grieving. He was building a 157 00:06:01,764 --> 00:06:02,264 case. 158 00:06:02,589 --> 00:06:05,310 But Dana was also battling severe hepatitis c, 159 00:06:05,310 --> 00:06:08,029 another consequence many families in the bleeding disorders 160 00:06:08,029 --> 00:06:11,069 community know too well. And in 1991, Dana 161 00:06:11,069 --> 00:06:12,430 says it got so bad, he believed he 162 00:06:12,430 --> 00:06:14,350 was dying. So picture a living room floor 163 00:06:14,350 --> 00:06:16,509 covered in documents, a man fighting for his 164 00:06:16,509 --> 00:06:19,394 life, and still choosing to keep going. And 165 00:06:19,394 --> 00:06:21,954 in that confusion of illness, evidence, and anger, 166 00:06:21,954 --> 00:06:24,134 a name emerged, the trail of AIDS. 167 00:06:25,954 --> 00:06:27,654 I put them in chronological 168 00:06:28,035 --> 00:06:30,214 order. And when I put them into chronological 169 00:06:30,675 --> 00:06:33,300 order, the sequence of events, and I I 170 00:06:33,300 --> 00:06:35,620 put them together and I was livid. I 171 00:06:35,620 --> 00:06:39,539 said, you all knew what and when, but 172 00:06:39,539 --> 00:06:42,659 you didn't do anything about it. You were 173 00:06:42,659 --> 00:06:45,219 you were taking the advice of the blood 174 00:06:45,219 --> 00:06:48,714 banks and taking the who produce the products 175 00:06:48,935 --> 00:06:49,834 and the manufacturers 176 00:06:51,014 --> 00:06:53,754 who were processing and selling the products, 177 00:06:54,055 --> 00:06:56,634 and you all knew it was contaminated, 178 00:06:57,574 --> 00:06:59,560 and you didn't do anything about it. The 179 00:06:59,560 --> 00:07:00,920 only way they would pull them off the 180 00:07:00,920 --> 00:07:02,680 shelves or recall them is that they could 181 00:07:02,680 --> 00:07:04,759 trace it back to a person who had 182 00:07:04,759 --> 00:07:06,600 AIDS. By that time, it's too late. It's 183 00:07:06,600 --> 00:07:08,680 been distributed. This is a hard truth about 184 00:07:08,680 --> 00:07:09,180 advocacy. 185 00:07:09,560 --> 00:07:11,814 Sometimes you don't start with hope. Sometimes you 186 00:07:11,814 --> 00:07:14,235 start with refusal to let silence win, 187 00:07:14,615 --> 00:07:16,555 to let harm disappear into a footnote, 188 00:07:16,935 --> 00:07:19,175 to let people who profited from delay walk 189 00:07:19,175 --> 00:07:21,495 away clean. And Dana's next move proves something 190 00:07:21,495 --> 00:07:23,814 important for all of us. Advocacy isn't one 191 00:07:23,814 --> 00:07:27,079 thing. It's bedside courage. It's paperwork. It's phone 192 00:07:27,079 --> 00:07:27,579 calls. 193 00:07:27,959 --> 00:07:29,259 It's showing up anyway, 194 00:07:29,560 --> 00:07:31,399 even when it costs you. Dana took the 195 00:07:31,399 --> 00:07:32,599 trail of AIDS where it could do what 196 00:07:32,599 --> 00:07:35,240 support groups in private grief never could, force 197 00:07:35,240 --> 00:07:35,740 accountability. 198 00:07:36,120 --> 00:07:38,459 I knew I had to 199 00:07:39,319 --> 00:07:40,060 take them, 200 00:07:40,495 --> 00:07:42,914 print them off, make the copies of this, 201 00:07:43,214 --> 00:07:46,014 and give them to senator Bob Graham of 202 00:07:46,014 --> 00:07:49,794 Florida, representative Porter Goss of Florida, and senator 203 00:07:49,935 --> 00:07:51,714 Ted Kennedy of Massachusetts. 204 00:07:52,680 --> 00:07:55,160 And I got to know them very well 205 00:07:55,160 --> 00:07:58,199 by just making an appointment and taking these 206 00:07:58,199 --> 00:08:00,439 to them and letting them know. And at 207 00:08:00,439 --> 00:08:03,240 that time, I also met Louise Ray who 208 00:08:03,240 --> 00:08:06,725 had their sons that all had HIV. So 209 00:08:06,725 --> 00:08:08,584 she worked with me in 210 00:08:09,285 --> 00:08:12,165 convincing everybody that they needed to look at 211 00:08:12,165 --> 00:08:15,925 these documents and it was was surprising. I 212 00:08:15,925 --> 00:08:18,264 left it I think around December and 213 00:08:18,564 --> 00:08:20,759 in January, I got a call said, can 214 00:08:20,759 --> 00:08:22,600 you please come in? We wanna talk to 215 00:08:22,600 --> 00:08:25,480 you about it. They all were appalled at 216 00:08:25,480 --> 00:08:28,040 what they saw. I said, our community has 217 00:08:28,040 --> 00:08:30,300 been crying out for a congressional investigation. 218 00:08:30,600 --> 00:08:32,759 And, I and, you know, they weren't gonna 219 00:08:32,759 --> 00:08:35,884 get one. Senator Kennedy, senator Graham, and Porter 220 00:08:35,884 --> 00:08:39,485 Goss sent over the trail of eight to 221 00:08:39,485 --> 00:08:39,985 secretary 222 00:08:40,524 --> 00:08:43,884 Donna Shalala. And she in turn commissioned the 223 00:08:43,884 --> 00:08:46,464 in Institute of Medicine Academy of Sciences 224 00:08:47,004 --> 00:08:50,399 to do a study. And this was in 225 00:08:50,399 --> 00:08:53,039 1993. 226 00:08:53,039 --> 00:08:55,360 And the study was took two years, and 227 00:08:55,360 --> 00:08:57,199 it finished in 1995, 228 00:08:57,199 --> 00:08:58,000 July 229 00:08:58,000 --> 00:09:00,980 1995. Two years. After all of this fighting, 230 00:09:01,039 --> 00:09:02,579 still more time will pass. 231 00:09:02,934 --> 00:09:04,615 During which Dana was called up by the 232 00:09:04,615 --> 00:09:07,095 investigation to help understand how he put this 233 00:09:07,095 --> 00:09:09,175 all together. And I showed them through every 234 00:09:09,335 --> 00:09:10,934 walked them through everything, and I said there 235 00:09:10,934 --> 00:09:13,014 are more documents out there. And I spent 236 00:09:13,014 --> 00:09:15,815 about three weeks doing that with them. That 237 00:09:15,815 --> 00:09:17,434 was my motivate my motivation 238 00:09:18,080 --> 00:09:20,879 was to make sense of not only my 239 00:09:20,879 --> 00:09:21,379 infection, 240 00:09:21,840 --> 00:09:25,200 but Patty's death because no one ever told 241 00:09:25,200 --> 00:09:27,679 us how to prevent this. And no one 242 00:09:27,679 --> 00:09:29,620 made a decision in the very beginning 243 00:09:30,205 --> 00:09:32,924 to quarantine these products or get the news 244 00:09:32,924 --> 00:09:35,264 out about these products because they were afraid 245 00:09:35,404 --> 00:09:38,464 at that time, especially the National Hemophilia Foundation, 246 00:09:38,524 --> 00:09:39,264 of associating 247 00:09:39,884 --> 00:09:42,284 hemophilia and AIDS. They did not want to 248 00:09:42,284 --> 00:09:43,264 associate it. 249 00:09:44,029 --> 00:09:45,789 So all I can say is that I 250 00:09:45,789 --> 00:09:46,769 was the catalyst 251 00:09:47,309 --> 00:09:50,509 of getting these documents, which started the ball 252 00:09:50,509 --> 00:09:51,009 rolling 253 00:09:51,309 --> 00:09:54,370 for not only the Institute of Medicine report 254 00:09:54,429 --> 00:09:56,610 coming out with 14 recommendations 255 00:09:57,230 --> 00:10:00,335 for blood safety, but also the Ricky Ray 256 00:10:00,335 --> 00:10:00,835 bill. 257 00:10:04,095 --> 00:10:06,274 It's a moment like this when your splash 258 00:10:06,335 --> 00:10:07,235 creates a ripple. 259 00:10:07,774 --> 00:10:10,035 What Dana helped trigger wasn't only a report, 260 00:10:10,174 --> 00:10:11,695 it was a shift in what the country 261 00:10:11,695 --> 00:10:13,830 was willing to admit. There was a moment 262 00:10:13,830 --> 00:10:16,870 to blame, vindication after years of work, but 263 00:10:16,870 --> 00:10:19,029 there would be more. Dana's efforts would help 264 00:10:19,029 --> 00:10:20,970 lead in part to the Ricky Ray Hemophilia 265 00:10:21,110 --> 00:10:24,649 Relief Fund Act, federal legislation that created compassionate 266 00:10:24,789 --> 00:10:28,404 payments for eligible people with hemophilia who contracted 267 00:10:28,464 --> 00:10:30,245 HIV from certain blood products. 268 00:10:30,625 --> 00:10:33,664 It wasn't justice, but it was acknowledgment. Yes. 269 00:10:33,664 --> 00:10:36,225 So I just just realized that if it 270 00:10:36,225 --> 00:10:38,065 hadn't been for this trail of AIDS in 271 00:10:38,065 --> 00:10:39,445 the hemophilia community, 272 00:10:39,769 --> 00:10:40,590 we probably 273 00:10:40,970 --> 00:10:42,190 would not have had, 274 00:10:43,690 --> 00:10:46,830 the Institute of Medicine Academy of Science report 275 00:10:47,289 --> 00:10:49,450 and and I know we we wouldn't have 276 00:10:49,450 --> 00:10:51,789 gotten the Ricky Ray bill because they needed 277 00:10:51,929 --> 00:10:54,174 the proof that there was a reason 278 00:10:54,475 --> 00:10:56,495 for the government to compensate. 279 00:10:56,875 --> 00:10:59,375 And beyond compensation for families affected, 280 00:10:59,754 --> 00:11:02,235 federal guidelines in the establishment for the very 281 00:11:02,235 --> 00:11:04,875 first time of the Blood Safety Council. Number 282 00:11:04,875 --> 00:11:07,580 one, to assign someone who would oversee 283 00:11:07,960 --> 00:11:11,160 the nation's blood supply from the Department of 284 00:11:11,160 --> 00:11:12,460 Health and Human Services. 285 00:11:12,840 --> 00:11:16,040 And the second was to establish a Blood 286 00:11:16,040 --> 00:11:17,179 Safety Council, 287 00:11:17,480 --> 00:11:20,434 which then became the advisory committee of blood 288 00:11:20,434 --> 00:11:21,415 safety and availability. 289 00:11:22,035 --> 00:11:23,894 And then there were other other 290 00:11:24,434 --> 00:11:26,455 categories of involving the CDC 291 00:11:27,154 --> 00:11:27,654 with 292 00:11:28,035 --> 00:11:31,850 their division of blood disorders and to working 293 00:11:31,850 --> 00:11:32,350 collaboratively 294 00:11:32,730 --> 00:11:34,589 with them. And, there was 295 00:11:34,970 --> 00:11:37,769 also who the committee would be made up 296 00:11:37,769 --> 00:11:40,570 of. People who were concerned with society, there 297 00:11:40,570 --> 00:11:42,169 would be some lawyers on it, there'd be 298 00:11:42,169 --> 00:11:45,389 some doctors on it, there'd be some agencies 299 00:11:45,690 --> 00:11:46,829 on it, and then, 300 00:11:47,615 --> 00:11:49,315 you know, social workers 301 00:11:49,855 --> 00:11:53,774 and counselors and then it was consumers. There'd 302 00:11:53,774 --> 00:11:56,355 be a consumer on it. And Donna Shalala, 303 00:11:57,375 --> 00:11:59,475 through one of the people in HHS, 304 00:12:00,029 --> 00:12:02,029 decided that they would invite me to be 305 00:12:02,029 --> 00:12:02,929 the first consumer 306 00:12:03,470 --> 00:12:05,470 to serve on the advisory committee of blood 307 00:12:05,470 --> 00:12:08,610 safety and availability, and that was 1996. 308 00:12:08,750 --> 00:12:10,589 The work Dana and so many others worked 309 00:12:10,589 --> 00:12:12,769 tirelessly to organize and uncover 310 00:12:13,230 --> 00:12:15,524 was only the beginning because that inspiration 311 00:12:15,985 --> 00:12:18,304 lit a fire under an entire community. You 312 00:12:18,304 --> 00:12:20,144 know, even though I may have been a 313 00:12:20,144 --> 00:12:23,665 catalyst, then this community joined in with us. 314 00:12:23,665 --> 00:12:26,304 And and, you know, and people started to 315 00:12:26,304 --> 00:12:28,245 get together. It was everybody. 316 00:12:28,769 --> 00:12:31,570 The committee of ten thousand, Hemophilia Federation of 317 00:12:31,570 --> 00:12:34,850 America, and the National Hemophilia Foundation all working 318 00:12:34,850 --> 00:12:35,350 together 319 00:12:35,970 --> 00:12:36,790 to to 320 00:12:37,410 --> 00:12:39,490 to make things happen. This is key to 321 00:12:39,490 --> 00:12:42,014 what Dana really did. He helped a community 322 00:12:42,014 --> 00:12:44,754 find a voice that refuses to stay hidden. 323 00:12:45,215 --> 00:12:47,615 Because when people stop feeling alone, they start 324 00:12:47,615 --> 00:12:50,835 becoming organized. And when they organize, systems change, 325 00:12:51,294 --> 00:12:53,215 which brings us to why Dana is speaking 326 00:12:53,215 --> 00:12:55,855 with urgency now. It wasn't until this past 327 00:12:55,855 --> 00:12:58,580 year where I learned that in July, 328 00:13:00,480 --> 00:13:01,139 a message 329 00:13:01,519 --> 00:13:04,660 went out through the advisory committee 330 00:13:05,040 --> 00:13:06,500 of blood tissue 331 00:13:06,960 --> 00:13:08,100 safety and availability. 332 00:13:08,559 --> 00:13:12,105 The government dismantled it, and HHS didn't keep 333 00:13:12,105 --> 00:13:14,664 that committee anymore. And I found out about 334 00:13:14,664 --> 00:13:18,345 that, and shortly thereafter, I also learned that 335 00:13:18,345 --> 00:13:21,225 the government did a reduction in force in 336 00:13:21,225 --> 00:13:24,605 CDC personnel at this division of blood disorders. 337 00:13:24,940 --> 00:13:27,440 And so those two are so important 338 00:13:27,899 --> 00:13:30,800 to the national safety of our blood supply. 339 00:13:30,860 --> 00:13:33,340 And you don't get rid of something that 340 00:13:33,340 --> 00:13:36,080 was overseeing the safety of your blood supply 341 00:13:36,300 --> 00:13:37,680 who called to accountability 342 00:13:38,534 --> 00:13:40,634 many of the blood product collection 343 00:13:41,014 --> 00:13:42,394 companies, the manufacturers, 344 00:13:43,254 --> 00:13:45,654 and kept them testing what they needed to 345 00:13:45,654 --> 00:13:48,875 do, which they didn't do earlier, and screening, 346 00:13:48,934 --> 00:13:52,154 and all these all these policies and procedures 347 00:13:52,294 --> 00:13:54,730 that they did, who is overseeing them? And 348 00:13:54,730 --> 00:13:56,029 when I asked that question 349 00:13:56,730 --> 00:13:57,230 of 350 00:13:57,769 --> 00:14:00,169 of some people in the government, they said, 351 00:14:00,169 --> 00:14:03,289 well and especially some of these industry people 352 00:14:03,289 --> 00:14:05,625 who are collecting blood, they said, well, we're 353 00:14:05,625 --> 00:14:08,105 we're gonna make sure it's done correctly. Well, 354 00:14:08,105 --> 00:14:11,325 that's like someone policing themselves to not speed. 355 00:14:11,465 --> 00:14:14,205 There's self interest there, you know, and sometimes 356 00:14:14,425 --> 00:14:16,985 who's gonna keep the check and balances? And 357 00:14:16,985 --> 00:14:19,300 that's when I decided we needed to get 358 00:14:19,300 --> 00:14:19,879 this community 359 00:14:20,180 --> 00:14:21,720 back into advocacy 360 00:14:22,259 --> 00:14:24,120 and question why and support 361 00:14:24,500 --> 00:14:26,200 the reinstatement and refunding 362 00:14:26,660 --> 00:14:28,980 of the advisory committee of blood safety and 363 00:14:28,980 --> 00:14:32,600 the CDC division, blood disorders. If oversight disappears, 364 00:14:32,980 --> 00:14:36,955 accountability weakens. And if accountability weakens, safety depends 365 00:14:36,955 --> 00:14:39,835 on self policing, which history has already proven 366 00:14:39,835 --> 00:14:40,654 isn't enough. 367 00:14:41,035 --> 00:14:43,035 So Dana did what he's always done. He 368 00:14:43,035 --> 00:14:45,675 called the community back to work. Dana reached 369 00:14:45,675 --> 00:14:48,394 out to organizations doing the daily grinding essential 370 00:14:48,394 --> 00:14:49,375 work of advocacy, 371 00:14:49,809 --> 00:14:53,009 including the Coalition for Hemophilia b, because protecting 372 00:14:53,009 --> 00:14:56,050 families requires a community voice where decisions are 373 00:14:56,050 --> 00:14:57,970 being made. You don't wanna see the government 374 00:14:57,970 --> 00:15:00,129 take two steps forward and three steps backwards, 375 00:15:00,129 --> 00:15:01,910 and that's what they're doing, cherishing 376 00:15:02,290 --> 00:15:05,235 the safety of the nation's blood supply. And 377 00:15:05,235 --> 00:15:06,835 I look at it this way and and 378 00:15:06,835 --> 00:15:08,754 I have to say this, not only are 379 00:15:08,754 --> 00:15:10,355 other people in the future gonna be put 380 00:15:10,355 --> 00:15:12,274 in danger, but you just walked over all 381 00:15:12,274 --> 00:15:14,615 the graves of the people who died 382 00:15:15,899 --> 00:15:16,799 that I know, 383 00:15:17,179 --> 00:15:19,659 including, you know, the motivation of my wife 384 00:15:19,659 --> 00:15:22,379 dying to be safe. And these people who 385 00:15:22,379 --> 00:15:24,379 came up to DC to do this because 386 00:15:24,379 --> 00:15:26,460 it was so important. And they knew it 387 00:15:26,460 --> 00:15:28,860 was important because they lost loved ones because 388 00:15:28,860 --> 00:15:31,725 of this. And the government paid close to 389 00:15:31,725 --> 00:15:33,024 $1,000,000,000 390 00:15:33,325 --> 00:15:34,544 in compensatory 391 00:15:35,404 --> 00:15:37,105 money to the community. 392 00:15:37,565 --> 00:15:39,665 I mean, what didn't you learn a lesson? 393 00:15:40,205 --> 00:15:42,205 You know, it's like my grandmother used to 394 00:15:42,205 --> 00:15:43,804 say put your hand on the stove and 395 00:15:43,804 --> 00:15:45,500 get burned once Put your hand on the 396 00:15:45,500 --> 00:15:47,660 stove a second time, you removed all doubt 397 00:15:47,660 --> 00:15:49,980 that you're a fool. They they they have 398 00:15:49,980 --> 00:15:53,019 lost perspective on what is important to the 399 00:15:53,019 --> 00:15:55,340 American people and the safety of the American 400 00:15:55,340 --> 00:15:57,980 people. And even after all the loss, after 401 00:15:57,980 --> 00:15:59,120 decades of fighting, 402 00:15:59,585 --> 00:16:01,745 Dana tells us what gives him hope. Not 403 00:16:01,745 --> 00:16:02,325 a policy, 404 00:16:02,945 --> 00:16:03,764 not a committee, 405 00:16:04,225 --> 00:16:06,705 but the people. And I was so excited 406 00:16:06,705 --> 00:16:09,585 to hear that coalition b was wanting to 407 00:16:09,585 --> 00:16:11,825 get involved with this. And what gives me 408 00:16:11,825 --> 00:16:13,684 hope is seeing a younger generation 409 00:16:14,399 --> 00:16:17,699 getting excited about going and visiting their legislator 410 00:16:18,159 --> 00:16:20,799 for this cause. And I watched a number 411 00:16:20,799 --> 00:16:24,019 of of younger people do that, getting excited 412 00:16:24,079 --> 00:16:27,220 about realizing that the issues of blood safety. 413 00:16:27,279 --> 00:16:29,279 I went with some on a a hill 414 00:16:29,279 --> 00:16:30,495 day, and 415 00:16:30,795 --> 00:16:33,355 I watched them tell their stories. And I 416 00:16:33,355 --> 00:16:36,235 watched them get excited about telling their stories 417 00:16:36,235 --> 00:16:37,455 and excited about 418 00:16:37,835 --> 00:16:40,415 what their asks were in front of legislators 419 00:16:40,554 --> 00:16:42,975 or legislative staff. And I'm thinking, 420 00:16:43,309 --> 00:16:45,709 my gosh. It's happening again. I can't wait 421 00:16:45,709 --> 00:16:46,929 to see more advocates 422 00:16:47,309 --> 00:16:49,549 come come about. And I'm glad that the 423 00:16:49,549 --> 00:16:51,629 organizations are doing this. And anything I can 424 00:16:51,629 --> 00:16:54,110 help these organizations, I'm doing. When I go 425 00:16:54,110 --> 00:16:55,649 in, I say I'm representing 426 00:16:55,950 --> 00:16:58,029 all of these organizations. I've been part of 427 00:16:58,029 --> 00:16:59,795 them all in one way or the other 428 00:16:59,795 --> 00:17:02,295 throughout the years, and we're still a community. 429 00:17:02,514 --> 00:17:04,914 And so it's just not me, just not 430 00:17:04,914 --> 00:17:06,835 me representing one, but there's a lot of 431 00:17:06,835 --> 00:17:07,335 organizations 432 00:17:07,714 --> 00:17:09,875 that are that are all involved in this. 433 00:17:09,875 --> 00:17:11,015 Don't give up hope. 434 00:17:11,359 --> 00:17:13,440 And I think you if you have a 435 00:17:13,440 --> 00:17:15,759 cause and you know the right thing to 436 00:17:15,759 --> 00:17:18,000 do and you know the truth and you 437 00:17:18,000 --> 00:17:20,880 know what your community needs, pursue it, do 438 00:17:20,880 --> 00:17:22,799 it, and do it with hope that it's 439 00:17:22,799 --> 00:17:23,414 gonna happen. 440 00:17:27,575 --> 00:17:29,335 Dana's story began with an injury on a 441 00:17:29,335 --> 00:17:32,295 basketball court and became a lifelong confrontation with 442 00:17:32,295 --> 00:17:34,634 what happens when systems move too slowly. 443 00:17:35,015 --> 00:17:37,335 He turned grief into a mission. He turned 444 00:17:37,335 --> 00:17:40,150 documents into leverage. He turned stigma into a 445 00:17:40,150 --> 00:17:43,029 public truth. And now he's asking something simple 446 00:17:43,029 --> 00:17:43,930 of all of us. 447 00:17:44,230 --> 00:17:46,710 Don't forget what this cost. Don't assume safety 448 00:17:46,710 --> 00:17:49,590 is permanent, and don't outsource advocacy to someone 449 00:17:49,590 --> 00:17:51,670 else because the ripples only last if we 450 00:17:51,670 --> 00:17:53,714 keep making them. Thanks for listening to Boundless 451 00:17:53,794 --> 00:17:56,674 Bee, the Hemophilia Bee podcast, the podcast standing 452 00:17:56,674 --> 00:17:58,914 with you from a family like yours, presented 453 00:17:58,914 --> 00:18:01,394 by the Coalition for Hemophilia Bee and in 454 00:18:01,394 --> 00:18:03,414 partnership with Balancing Life's Issues. 455 00:18:18,179 --> 00:18:20,179 Thank you for listening to Boundless Bee, the 456 00:18:20,179 --> 00:18:23,220 hemophilia bee podcast. The podcast standing with you 457 00:18:23,220 --> 00:18:25,454 from a family like yours presented by the 458 00:18:25,454 --> 00:18:28,095 Coalition for Hemophilia B and in partnership with 459 00:18:28,095 --> 00:18:31,134 Balancing Life's Issues. Produced by me, Kai. Got 460 00:18:31,134 --> 00:18:32,894 an idea for the show? Send us an 461 00:18:32,894 --> 00:18:35,355 email at podcast@hemob.org, 462 00:18:35,434 --> 00:18:37,115 and don't forget to stay connected to your 463 00:18:37,115 --> 00:18:39,585 community at hemo b dot org. Anything else 464 00:18:39,585 --> 00:18:40,575 to add, Miles?