1 00:00:00,880 --> 00:00:03,299 And I remember thinking if this could happen 2 00:00:03,359 --> 00:00:03,859 to 3 00:00:04,240 --> 00:00:07,200 me as a clinician coming in, telling people 4 00:00:07,200 --> 00:00:08,980 something is wrong and then 5 00:00:09,439 --> 00:00:09,939 minimizing 6 00:00:10,480 --> 00:00:12,799 my experience, it can happen to anyone and 7 00:00:12,799 --> 00:00:15,174 it still happens to many people to this 8 00:00:15,174 --> 00:00:17,414 day. And it almost took my life, and 9 00:00:17,414 --> 00:00:18,875 I imagine that many women 10 00:00:19,254 --> 00:00:20,074 die unnecessarily 11 00:00:20,375 --> 00:00:21,274 because of it. 12 00:00:22,774 --> 00:00:25,494 Welcome to Boundless Bee, the Hemophilia Bee podcast, 13 00:00:25,494 --> 00:00:27,414 the podcast standing with you from a family 14 00:00:27,414 --> 00:00:29,994 like yours, presented by the Coalition for Hemophilia 15 00:00:30,294 --> 00:00:32,929 Bee and in partnership with Balancing Life's Issues. 16 00:00:33,390 --> 00:00:35,810 Today's guest is someone who's been challenging outdated 17 00:00:35,869 --> 00:00:38,989 systems and winning. Doctor Amber Federizo is a 18 00:00:38,989 --> 00:00:40,689 nationally recognized nurse practitioner, 19 00:00:41,149 --> 00:00:44,429 regulatory pioneer, and passionate advocate for women living 20 00:00:44,429 --> 00:00:45,435 with bleeding disorders. 21 00:00:45,914 --> 00:00:48,075 Her work has helped change how clinical trials 22 00:00:48,075 --> 00:00:50,954 are led, how underserved communities are reached, and 23 00:00:50,954 --> 00:00:53,835 perhaps most importantly, how women are heard. This 24 00:00:53,835 --> 00:00:56,795 conversation is about power, specifically the power of 25 00:00:56,795 --> 00:00:58,495 language, access, and advocacy, 26 00:00:59,120 --> 00:01:01,200 and how a life changing word can change 27 00:01:01,200 --> 00:01:03,920 someone's entire experience of care. Welcome to the 28 00:01:03,920 --> 00:01:04,900 podcast, Amber. 29 00:01:08,079 --> 00:01:10,159 Thank you. And it's, always a pleasure and 30 00:01:10,159 --> 00:01:12,480 an honor to be here. Every opportunity to 31 00:01:12,480 --> 00:01:14,834 reach, you know, get this education out there, 32 00:01:14,834 --> 00:01:17,155 reach a broader audience, I appreciate. So thank 33 00:01:17,155 --> 00:01:18,135 you for the invitation. 34 00:01:18,594 --> 00:01:20,515 Of course. So let's start with your journey 35 00:01:20,515 --> 00:01:22,594 into advocacy and I think what we'll call 36 00:01:22,594 --> 00:01:24,754 innovation. So how did your journey in clinical 37 00:01:24,754 --> 00:01:27,174 care lead to the broader kind of advocacy 38 00:01:27,314 --> 00:01:29,129 and regulatory work you do now? 39 00:01:29,849 --> 00:01:31,310 Yeah. So it's been 40 00:01:31,609 --> 00:01:33,930 fifteen years now, which is amazing to me 41 00:01:33,930 --> 00:01:35,869 that it's been already fifteen years. 42 00:01:36,170 --> 00:01:37,229 And when I first started, 43 00:01:37,689 --> 00:01:40,030 I realized that a lot of the questions 44 00:01:40,090 --> 00:01:42,750 that we thought we were asking, we really 45 00:01:42,810 --> 00:01:45,405 weren't. And the assumptions that were made based 46 00:01:45,405 --> 00:01:48,244 on that asking those questions were that people 47 00:01:48,244 --> 00:01:50,644 weren't bleeding or they weren't having issues or 48 00:01:50,644 --> 00:01:51,144 they 49 00:01:51,525 --> 00:01:54,004 were just fine. But in truth, the reason 50 00:01:54,004 --> 00:01:56,165 that a lot of data is missing is 51 00:01:56,165 --> 00:01:58,405 because we were not asking the questions. And 52 00:01:58,405 --> 00:02:00,689 so as I began asking these questions, it 53 00:02:00,689 --> 00:02:01,189 led 54 00:02:01,649 --> 00:02:04,390 to more questions and, you know, this desire 55 00:02:04,530 --> 00:02:07,090 to look further into it over time. And 56 00:02:07,090 --> 00:02:08,310 so very early on, 57 00:02:08,610 --> 00:02:11,250 I started working with with women and asking 58 00:02:11,250 --> 00:02:12,709 these questions and developing 59 00:02:13,254 --> 00:02:15,415 this whole clinical care that needed to be 60 00:02:15,415 --> 00:02:17,115 set for them as well. 61 00:02:18,055 --> 00:02:19,594 Absolutely. And and so 62 00:02:19,895 --> 00:02:22,375 what, I guess, inspired you to focus on 63 00:02:22,375 --> 00:02:23,675 women in rare diseases? 64 00:02:25,014 --> 00:02:27,090 Yeah. So, people ask me that all the 65 00:02:27,090 --> 00:02:29,569 time. And when they find out that my 66 00:02:29,569 --> 00:02:31,969 husband and my son also have bleeding disorders, 67 00:02:31,969 --> 00:02:33,650 they assume that that brought me into the 68 00:02:33,650 --> 00:02:36,209 community, but, they were actually diagnosed as a 69 00:02:36,209 --> 00:02:38,150 result of me coming into the community. 70 00:02:38,555 --> 00:02:39,055 I 71 00:02:39,355 --> 00:02:42,075 had my husband experiencing four hour nosebleeds, and 72 00:02:42,075 --> 00:02:44,155 his family had always thought that was a 73 00:02:44,155 --> 00:02:45,215 100% normal. 74 00:02:45,675 --> 00:02:47,835 And in learning through all of this, I've 75 00:02:47,835 --> 00:02:49,754 told him that is absolutely not a 100% 76 00:02:49,754 --> 00:02:51,995 normal, and so they were diagnosed after I'd 77 00:02:51,995 --> 00:02:54,260 come in. But what brought me into the 78 00:02:54,260 --> 00:02:56,919 focus of women was actually my own experience 79 00:02:57,139 --> 00:03:00,580 as a clinician. I unfortunately lost a sec 80 00:03:00,659 --> 00:03:02,040 second trimester pregnancy, 81 00:03:02,659 --> 00:03:04,754 and I was taken to the, 82 00:03:05,555 --> 00:03:07,955 ER because I was bleeding too profusely. And 83 00:03:07,955 --> 00:03:09,415 originally, I had been told 84 00:03:09,715 --> 00:03:12,194 this miscarriage will be similar to sort of 85 00:03:12,194 --> 00:03:14,355 a period. You'll have cramping, you'll have pain, 86 00:03:14,355 --> 00:03:16,835 but it won't be so bad. And when 87 00:03:16,835 --> 00:03:18,879 I got to the ER, like, I had 88 00:03:18,879 --> 00:03:21,280 new I knew something was wrong. Like, you 89 00:03:21,280 --> 00:03:23,459 just get this feeling, this sense of impending 90 00:03:24,000 --> 00:03:26,080 doom. You know something is wrong. I had 91 00:03:26,080 --> 00:03:27,699 tried my best to stay home. 92 00:03:28,080 --> 00:03:30,900 I, as like many health care clinicians, avoid 93 00:03:31,039 --> 00:03:33,325 going in with as much of my fiber 94 00:03:33,325 --> 00:03:35,165 being as possible. So when I was brought 95 00:03:35,165 --> 00:03:37,825 in, it was still that same story of 96 00:03:38,205 --> 00:03:40,064 just let it happen. It's a miscarriage. 97 00:03:40,605 --> 00:03:41,885 We're just gonna put you in a room. 98 00:03:41,885 --> 00:03:44,064 You know, we'll give you your privacy. And 99 00:03:44,125 --> 00:03:44,944 I had 100 00:03:45,245 --> 00:03:46,305 the most extreme 101 00:03:46,685 --> 00:03:47,185 pain, 102 00:03:47,750 --> 00:03:49,769 And, they started giving me pain medication. 103 00:03:50,229 --> 00:03:52,389 And I, over the course of a few 104 00:03:52,389 --> 00:03:55,269 hours, started to really get really tired and 105 00:03:55,269 --> 00:03:57,349 cold. And so they kept bringing me blankets, 106 00:03:57,349 --> 00:03:59,209 you know, bring her comfort, and I wasn't, 107 00:03:59,269 --> 00:04:00,965 you know, on a monitor or anything like 108 00:04:00,965 --> 00:04:02,405 that. So they were giving me pain meds. 109 00:04:02,405 --> 00:04:05,125 They were giving me blankets upon blankets. And, 110 00:04:05,125 --> 00:04:05,625 unfortunately, 111 00:04:05,925 --> 00:04:08,564 what ended up happening was I had actually 112 00:04:08,564 --> 00:04:10,665 been bleeding out. So my 113 00:04:10,965 --> 00:04:12,885 OB, who thank god had come on shift 114 00:04:12,885 --> 00:04:15,389 in the morning reviewing the records of the 115 00:04:15,389 --> 00:04:17,310 hospital, saw that I was in the ER. 116 00:04:17,310 --> 00:04:19,310 He came down and was like, hey. What's 117 00:04:19,310 --> 00:04:20,930 going on? I hadn't been contacted 118 00:04:21,389 --> 00:04:22,750 because the ER was just like, oh, it's 119 00:04:22,750 --> 00:04:24,589 a miscarriage. We don't need to call the 120 00:04:24,589 --> 00:04:25,089 OB. 121 00:04:25,709 --> 00:04:28,449 And, he pulled back the blankets, and underneath 122 00:04:28,509 --> 00:04:30,915 all of those blankets, blood just spilled out 123 00:04:30,915 --> 00:04:31,814 onto the floor. 124 00:04:32,194 --> 00:04:34,514 All I remember of any of this was 125 00:04:34,514 --> 00:04:35,415 him screaming 126 00:04:36,194 --> 00:04:36,935 at everybody 127 00:04:37,555 --> 00:04:39,714 and then waking up in the ICU. And 128 00:04:39,714 --> 00:04:42,454 I remember thinking if this could happen to 129 00:04:42,839 --> 00:04:45,720 me as a clinician coming in, telling people 130 00:04:45,720 --> 00:04:47,500 something is wrong and then 131 00:04:48,120 --> 00:04:48,620 minimizing 132 00:04:49,000 --> 00:04:51,399 my experience, it can happen to anyone and 133 00:04:51,399 --> 00:04:53,720 it still happens to many people to this 134 00:04:53,720 --> 00:04:55,935 day. And it almost took my life, and 135 00:04:55,935 --> 00:04:57,395 I imagine that many women 136 00:04:57,774 --> 00:04:59,795 die unnecessarily because of it. 137 00:05:00,254 --> 00:05:00,754 Well, 138 00:05:01,134 --> 00:05:03,134 sorry. So sorry for your loss, and and 139 00:05:03,134 --> 00:05:05,074 thank you so much for sharing such a 140 00:05:05,774 --> 00:05:08,740 powerful and vulnerable story. And I think for 141 00:05:08,740 --> 00:05:11,060 many of our listeners, a very familiar one. 142 00:05:11,060 --> 00:05:12,759 Tell us about how that experience 143 00:05:13,139 --> 00:05:15,699 and not being listened to, not being heard, 144 00:05:15,699 --> 00:05:16,839 how should we phrase 145 00:05:17,219 --> 00:05:19,560 what that moment was like for you, and 146 00:05:19,699 --> 00:05:21,639 what do listeners need to know about 147 00:05:22,345 --> 00:05:24,504 being in the emergency room or with their 148 00:05:24,504 --> 00:05:25,404 health care professional? 149 00:05:26,264 --> 00:05:28,685 Yeah. It's a challenge because, you know, we 150 00:05:29,064 --> 00:05:31,625 we emphasize advocacy. And then sometimes when we're 151 00:05:31,625 --> 00:05:34,665 constantly telling people you need to listen or 152 00:05:34,665 --> 00:05:37,230 this isn't right, it can actually make them 153 00:05:37,230 --> 00:05:39,149 dismiss us more. So we have to be 154 00:05:39,149 --> 00:05:41,470 very careful in crafting how we speak, which 155 00:05:41,470 --> 00:05:42,209 is unfortunate 156 00:05:42,509 --> 00:05:43,490 to get our 157 00:05:43,870 --> 00:05:46,669 best efforts across. And I will always tell 158 00:05:46,669 --> 00:05:48,990 women who feel like they have failed in 159 00:05:48,990 --> 00:05:51,314 getting their goal that I too failed in 160 00:05:51,314 --> 00:05:53,235 getting my goal at that time because I 161 00:05:53,235 --> 00:05:55,014 was in such an emotional state 162 00:05:55,314 --> 00:05:57,814 that I was not even capable of advocating 163 00:05:58,035 --> 00:05:58,535 correctly 164 00:05:58,995 --> 00:06:01,574 for myself. So we are going to fail 165 00:06:01,954 --> 00:06:02,694 in communicating 166 00:06:03,074 --> 00:06:05,449 our needs. That's gonna happen, but we have 167 00:06:05,449 --> 00:06:07,850 to continue trying and improving upon it each 168 00:06:07,850 --> 00:06:10,810 time. Every time we do, it provides practice 169 00:06:10,810 --> 00:06:13,689 and it provides a foundation for the next 170 00:06:13,689 --> 00:06:16,009 time. That's hard to tell women that there's 171 00:06:16,009 --> 00:06:19,074 going to be those failures because it's, almost 172 00:06:19,074 --> 00:06:21,074 a learned helplessness. Right? Like, you didn't get 173 00:06:21,074 --> 00:06:23,074 what you needed the first time, so why 174 00:06:23,074 --> 00:06:25,154 should you go back? Why should you try 175 00:06:25,154 --> 00:06:27,014 again? And there is moments of 176 00:06:27,555 --> 00:06:29,875 hope in trying again. And so that's the 177 00:06:29,875 --> 00:06:31,415 challenge that I hope that this 178 00:06:31,750 --> 00:06:33,829 conveys is that I could have easily taken 179 00:06:33,829 --> 00:06:36,310 that situation and also been like, what's the 180 00:06:36,310 --> 00:06:38,149 point? You know, women aren't gonna be heard. 181 00:06:38,149 --> 00:06:40,229 They're not gonna be listened to. This is 182 00:06:40,229 --> 00:06:42,569 never going to change when in reality, 183 00:06:42,949 --> 00:06:44,389 it can change and it can help the 184 00:06:44,389 --> 00:06:46,764 next person. So I tell all the women 185 00:06:46,764 --> 00:06:48,785 that I encounter that you carry 186 00:06:49,085 --> 00:06:49,824 the women 187 00:06:50,205 --> 00:06:53,085 from generations before with you. They show up 188 00:06:53,085 --> 00:06:53,824 with you 189 00:06:54,205 --> 00:06:56,045 to your appointments. They are there with you. 190 00:06:56,045 --> 00:06:58,685 You are never alone. They went through that 191 00:06:58,685 --> 00:07:00,790 so that you can have a successful appointment 192 00:07:00,790 --> 00:07:02,629 so that you can be heard in the 193 00:07:02,629 --> 00:07:04,730 future. So people who feel alone 194 00:07:05,110 --> 00:07:07,589 going through those appointments know that you carry 195 00:07:07,589 --> 00:07:09,830 all these women who have struggled on this 196 00:07:09,830 --> 00:07:11,430 journey, and they are with you in those 197 00:07:11,430 --> 00:07:11,930 appointments. 198 00:07:12,714 --> 00:07:14,254 What what a powerful metaphor, 199 00:07:14,875 --> 00:07:16,714 to kind of visualize and and feel in 200 00:07:16,714 --> 00:07:18,555 those moments. Let me ask, is there any 201 00:07:18,555 --> 00:07:21,354 benefit to maybe those around you, whether it's 202 00:07:21,354 --> 00:07:23,995 a partner, caregiver? Now, I'm thinking about maybe 203 00:07:23,995 --> 00:07:26,414 I'm the father of somebody who has hemophilia 204 00:07:26,634 --> 00:07:27,134 B. 205 00:07:28,050 --> 00:07:30,370 When it comes to advocacy, what's what's their 206 00:07:30,370 --> 00:07:33,330 role in in being there present with with 207 00:07:33,330 --> 00:07:35,189 someone like yourself in that moment? 208 00:07:35,970 --> 00:07:37,270 Yeah. And it's it's a difficult, 209 00:07:38,210 --> 00:07:40,370 perspective because a lot of men feel like, 210 00:07:40,370 --> 00:07:42,204 you know, it's it's a women's these are 211 00:07:42,204 --> 00:07:44,365 women's issues, these are women's conditions, you know, 212 00:07:44,365 --> 00:07:46,225 what role can I play? I don't have 213 00:07:46,524 --> 00:07:47,964 a uterus. I cannot, 214 00:07:48,285 --> 00:07:50,944 carry children, but the role is to, 215 00:07:51,644 --> 00:07:54,144 be there. And not just be there, but 216 00:07:54,370 --> 00:07:56,769 when you feel like they're not being heard, 217 00:07:56,769 --> 00:07:59,329 step in and repeat what it is they 218 00:07:59,329 --> 00:08:01,250 are saying until there's an answer. Because we, 219 00:08:01,250 --> 00:08:03,589 unfortunately, even in 2026, 220 00:08:04,050 --> 00:08:05,669 have this notion 221 00:08:06,050 --> 00:08:08,149 that if a male is angry, 222 00:08:08,545 --> 00:08:11,185 you have to address that versus a woman 223 00:08:11,185 --> 00:08:13,205 who is angry. So a 224 00:08:13,585 --> 00:08:15,045 father or a husband 225 00:08:16,064 --> 00:08:16,805 being angry 226 00:08:17,585 --> 00:08:19,764 is scarier to clinicians 227 00:08:20,145 --> 00:08:23,170 than a woman being angry, which it's really 228 00:08:23,170 --> 00:08:25,810 in that conversation that if you feel like 229 00:08:25,810 --> 00:08:28,290 they're not being heard, then you need to 230 00:08:28,290 --> 00:08:30,370 repeat it so that they they can be 231 00:08:30,370 --> 00:08:32,789 heard and you carry that voice and support. 232 00:08:33,250 --> 00:08:35,409 Because some people, they just they don't say 233 00:08:35,409 --> 00:08:37,669 anything, and that is sort of silent 234 00:08:38,355 --> 00:08:41,075 agreement. And people take that as well. He 235 00:08:41,075 --> 00:08:43,335 must think that this is also an exaggerated 236 00:08:43,475 --> 00:08:46,615 symptom because she keeps complaining about this, and 237 00:08:47,075 --> 00:08:48,595 your role as a male is to say 238 00:08:48,595 --> 00:08:51,475 no. This is not normal. We live with 239 00:08:51,475 --> 00:08:53,235 this. We suffer with this as a family. 240 00:08:53,235 --> 00:08:53,850 It impacts 241 00:08:54,329 --> 00:08:56,809 me as well, and we need to address 242 00:08:56,809 --> 00:08:59,610 this. So it's really important that men show 243 00:08:59,610 --> 00:09:02,490 up because without men, this is not possible. 244 00:09:02,490 --> 00:09:05,129 This is not a women's only efforts. Without 245 00:09:05,129 --> 00:09:07,149 men, we will not make any progress. 246 00:09:07,684 --> 00:09:09,044 Yeah. And I'd like to speak a little 247 00:09:09,044 --> 00:09:10,404 more to that because during our pre call 248 00:09:10,404 --> 00:09:12,084 I had mentioned, you know, I'm, I'm a 249 00:09:12,084 --> 00:09:13,705 male interviewer interviewing 250 00:09:14,164 --> 00:09:16,725 a female about female, you know, blood related 251 00:09:16,725 --> 00:09:17,225 issues. 252 00:09:17,605 --> 00:09:19,445 And, you know, you said something really profound 253 00:09:19,445 --> 00:09:21,365 for me, which was along these lines of 254 00:09:21,365 --> 00:09:23,144 like, well, it is our role 255 00:09:23,519 --> 00:09:26,100 to take part in being educated 256 00:09:26,560 --> 00:09:27,300 on on 257 00:09:27,680 --> 00:09:29,360 the medical side of it all. So can 258 00:09:29,360 --> 00:09:30,980 you speak a little more to 259 00:09:31,360 --> 00:09:33,680 kind of like that role and how if 260 00:09:33,680 --> 00:09:35,139 if I'm a male and I'm uncomfortable, 261 00:09:35,955 --> 00:09:37,475 what are some steps I can take to 262 00:09:37,475 --> 00:09:39,154 get to a place of being able to 263 00:09:39,154 --> 00:09:41,555 be a better advocate for my daughter or 264 00:09:41,555 --> 00:09:42,695 my wife or my partner 265 00:09:42,995 --> 00:09:43,815 in those moments? 266 00:09:44,595 --> 00:09:47,014 The biggest thing that is going to help 267 00:09:47,154 --> 00:09:49,415 is to also be engaged in the education 268 00:09:49,795 --> 00:09:52,679 because we've, as a society, have set up 269 00:09:52,679 --> 00:09:53,980 this scenario where 270 00:09:54,279 --> 00:09:57,399 menstruation is a stigmatized non talked about thing. 271 00:09:57,399 --> 00:09:58,840 So men are like, oh, no. No. I'm 272 00:09:58,840 --> 00:10:00,279 not gonna talk about that. And when you 273 00:10:00,279 --> 00:10:02,860 don't talk about it, you you can't recognize 274 00:10:02,919 --> 00:10:04,725 the signs that they're suffering. You don't know 275 00:10:04,725 --> 00:10:06,644 what you're looking for. And when the time 276 00:10:06,644 --> 00:10:08,345 comes that you're in that discussion 277 00:10:08,725 --> 00:10:10,264 with someone, with a clinician, 278 00:10:10,805 --> 00:10:13,524 you will not feel confident leaking out because 279 00:10:13,524 --> 00:10:16,404 you won't know normal from abnormal. So I 280 00:10:16,404 --> 00:10:18,665 encourage people when you go to a 281 00:10:19,019 --> 00:10:20,320 conference or an educational 282 00:10:20,779 --> 00:10:22,379 session, such as we have coming up in 283 00:10:22,379 --> 00:10:23,759 April, which I will be 284 00:10:24,060 --> 00:10:26,460 presenting. So many people come to that session 285 00:10:26,460 --> 00:10:28,620 and and learn. And when you know and 286 00:10:28,620 --> 00:10:30,940 you learn and you have that education, then 287 00:10:30,940 --> 00:10:33,279 you have that confidence to say, this isn't 288 00:10:33,315 --> 00:10:35,475 this isn't right, and this isn't normal based 289 00:10:35,475 --> 00:10:38,115 on what I know instead of, well, this 290 00:10:38,115 --> 00:10:40,115 is a conversation between them because this is 291 00:10:40,115 --> 00:10:42,215 a topic in which I'm not well versed. 292 00:10:42,355 --> 00:10:44,375 Maybe speak a little bit to this is 293 00:10:44,674 --> 00:10:46,434 the idea of, like, a stupid question or 294 00:10:46,434 --> 00:10:48,115 it might feel like a stupid question. Can 295 00:10:48,115 --> 00:10:50,350 you, like, maybe talk a little bit about 296 00:10:50,350 --> 00:10:52,269 what is that entry point for someone? Like, 297 00:10:52,269 --> 00:10:54,110 I'm I'm at the conference and I see 298 00:10:54,110 --> 00:10:56,029 the Women Bleed two booth. I mean, I'm 299 00:10:56,029 --> 00:10:58,110 uncomfortable. What's a question I can go ask 300 00:10:58,110 --> 00:11:00,350 to kinda help break that barrier for your 301 00:11:00,429 --> 00:11:01,089 for ourselves? 302 00:11:02,204 --> 00:11:05,164 Yeah. You'll be amazed at how supported you 303 00:11:05,164 --> 00:11:07,964 will be if we are just genuine nature. 304 00:11:07,964 --> 00:11:09,644 We approach a booth like that, and we 305 00:11:09,644 --> 00:11:12,464 say, you know, these conversations make me uncomfortable, 306 00:11:12,924 --> 00:11:15,910 but I'm here, and I wanna learn. And 307 00:11:15,910 --> 00:11:17,350 what do you think would be best? How 308 00:11:17,350 --> 00:11:18,629 do you think it would be for me 309 00:11:18,629 --> 00:11:21,110 to start? What, in your opinion, do you 310 00:11:21,110 --> 00:11:23,029 think I should start with? And that kinda 311 00:11:23,029 --> 00:11:25,350 opens the conversation from whomever is there to 312 00:11:25,350 --> 00:11:27,590 say, hey. We have this resource and this 313 00:11:27,590 --> 00:11:29,669 information. You can start here, or we have 314 00:11:29,669 --> 00:11:31,804 these programs, or we have these sessions. 315 00:11:32,264 --> 00:11:34,985 It's opening that door to the conversation, which 316 00:11:34,985 --> 00:11:37,304 I know is it can be scary and 317 00:11:37,304 --> 00:11:38,524 hard to do. But 318 00:11:38,825 --> 00:11:42,105 if you imagine all of these people come 319 00:11:42,105 --> 00:11:45,059 to these events hoping that someone like you 320 00:11:45,059 --> 00:11:46,899 will come up and ask a question because 321 00:11:46,899 --> 00:11:48,659 they do want to spread this awareness in 322 00:11:48,659 --> 00:11:51,139 education. So there is no such thing as 323 00:11:51,139 --> 00:11:53,079 a stupid question. There are only 324 00:11:53,620 --> 00:11:54,120 unanswered, 325 00:11:54,659 --> 00:11:58,019 unresolved, and silent issues and suffering that if 326 00:11:58,019 --> 00:11:59,320 you don't ask that question, 327 00:11:59,674 --> 00:12:00,495 just continues 328 00:12:00,954 --> 00:12:02,154 on. Yeah. And, well, I guess what I'm 329 00:12:02,154 --> 00:12:03,434 hearing is if you don't have the question, 330 00:12:03,434 --> 00:12:05,355 maybe just acknowledge how uncomfortable you are and 331 00:12:05,355 --> 00:12:07,034 that that can even be the entry point 332 00:12:07,034 --> 00:12:09,754 to education like you're saying. So thank you 333 00:12:09,754 --> 00:12:11,115 so much for all that. And I think 334 00:12:11,115 --> 00:12:12,554 what I wanted to talk about now is 335 00:12:12,554 --> 00:12:13,834 a lot of the work you do focuses 336 00:12:13,834 --> 00:12:16,690 on language as a barrier to care and 337 00:12:16,690 --> 00:12:18,929 specifically that word carrier. So can we talk 338 00:12:18,929 --> 00:12:21,649 about why that term is problematic for women 339 00:12:21,649 --> 00:12:23,750 and girls in the bleeding disorders community? 340 00:12:24,370 --> 00:12:26,309 Yeah. So I stopped using 341 00:12:26,850 --> 00:12:29,054 the c word many years ago, 342 00:12:29,774 --> 00:12:32,254 because it caused so many problems and it 343 00:12:32,254 --> 00:12:32,754 causes 344 00:12:33,214 --> 00:12:35,855 so much confusion, and it really does a 345 00:12:35,855 --> 00:12:38,754 disservice to women in bleeding disorders. 346 00:12:39,294 --> 00:12:39,794 Because 347 00:12:40,174 --> 00:12:42,894 in no other disorder in which we have 348 00:12:42,894 --> 00:12:45,450 individuals who can suffer from the condition, 349 00:12:45,909 --> 00:12:48,950 do we, as clinicians, go out in literature 350 00:12:48,950 --> 00:12:51,450 and research and refer to it as carrier. 351 00:12:51,750 --> 00:12:53,769 And what I mean by that is, 352 00:12:54,309 --> 00:12:56,629 you know, we talk about women gaining care 353 00:12:56,629 --> 00:12:58,389 and accessing care, but then we call them 354 00:12:58,389 --> 00:13:00,805 carrier, and then there's confusion about what does 355 00:13:00,805 --> 00:13:02,644 that mean? Are they low? Are they not? 356 00:13:02,644 --> 00:13:04,805 Are they having symptoms? Are they not? And 357 00:13:04,805 --> 00:13:06,884 we are trying to splice that out, but 358 00:13:06,884 --> 00:13:08,485 I think we just have to leave that 359 00:13:08,485 --> 00:13:11,605 word behind entirely. In my practice, I've taken 360 00:13:11,605 --> 00:13:14,504 care of patients with sickle cell trait. 361 00:13:14,879 --> 00:13:16,960 And you have a conversation about what that 362 00:13:16,960 --> 00:13:18,259 means genetically, 363 00:13:19,120 --> 00:13:20,899 how you might have to assess that individual 364 00:13:21,519 --> 00:13:24,799 for, other things for risks, and you have 365 00:13:24,799 --> 00:13:27,575 others with alpha male trait who you also 366 00:13:27,575 --> 00:13:29,575 have to educate. And it may manifest in 367 00:13:29,575 --> 00:13:31,495 them in a certain way, and you have 368 00:13:31,495 --> 00:13:34,134 to monitor them for iron deficiency because things 369 00:13:34,134 --> 00:13:36,774 don't always look the way they are, but 370 00:13:36,774 --> 00:13:38,315 we call those traits. 371 00:13:38,695 --> 00:13:40,855 So in women with this, it should be 372 00:13:40,855 --> 00:13:43,840 identified as trait. And then from there, we 373 00:13:43,840 --> 00:13:47,039 evaluate whether they are expressing the worst of 374 00:13:47,039 --> 00:13:49,120 it, or we need to provide the education 375 00:13:49,120 --> 00:13:51,519 on the genetic potential in the future for 376 00:13:51,519 --> 00:13:53,220 them so that we can have these conversations 377 00:13:53,279 --> 00:13:56,480 that aren't shrouded in our inability to move 378 00:13:56,480 --> 00:13:59,715 on. We've spent so much time defining carrier 379 00:13:59,715 --> 00:14:01,794 that we've spent almost no time in the 380 00:14:01,794 --> 00:14:03,634 research of how do we approach them, how 381 00:14:03,634 --> 00:14:05,955 do we treat them, and how do we 382 00:14:05,955 --> 00:14:06,455 evaluate 383 00:14:07,075 --> 00:14:07,894 that treatment 384 00:14:08,355 --> 00:14:10,355 on an ongoing level. So there's no care 385 00:14:10,355 --> 00:14:12,799 guidelines. There is no pathways, and there is 386 00:14:12,799 --> 00:14:15,679 no algorithms even set out by the American 387 00:14:15,679 --> 00:14:18,720 Society of Hematology in this regard. There are 388 00:14:18,720 --> 00:14:19,459 many papers 389 00:14:20,079 --> 00:14:22,100 on the definition of carrier, 390 00:14:22,480 --> 00:14:24,079 and I just feel that we just need 391 00:14:24,079 --> 00:14:26,514 to leave that behind because we're just gonna 392 00:14:26,514 --> 00:14:27,815 spend another decade 393 00:14:28,274 --> 00:14:30,674 talking about it instead of moving on and 394 00:14:30,674 --> 00:14:31,815 moving forward with 395 00:14:32,195 --> 00:14:34,674 women have mild hemophilia or they have moderate 396 00:14:34,674 --> 00:14:36,375 hemophilia. And in my own experience, 397 00:14:36,850 --> 00:14:39,269 I actually had dropped hemophilia as well. 398 00:14:39,649 --> 00:14:41,490 So I had women who were presenting to 399 00:14:41,490 --> 00:14:43,409 the ER with lower levels and not being 400 00:14:43,409 --> 00:14:45,509 heard, and they weren't even contacting myself. 401 00:14:46,049 --> 00:14:48,210 And what I ended up doing was changing 402 00:14:48,210 --> 00:14:50,629 their medic alerts to say factor eight deficiency, 403 00:14:50,850 --> 00:14:51,750 factor nine 404 00:14:52,235 --> 00:14:55,274 deficiency. And it had a added benefit for 405 00:14:55,274 --> 00:14:58,394 men as well because I found out that 406 00:14:58,394 --> 00:15:00,714 men who were presenting to hospitals that we 407 00:15:00,714 --> 00:15:03,375 were not affiliated with were actually being appropriately 408 00:15:03,434 --> 00:15:05,615 treated because I had some people with 409 00:15:05,960 --> 00:15:08,120 hemophilia b who were being treated with factor 410 00:15:08,120 --> 00:15:08,620 eight. 411 00:15:09,320 --> 00:15:11,399 As you know, people type in hemophilia or 412 00:15:11,399 --> 00:15:14,360 anti hemophilia or whatever. Hemophilia b doesn't tell 413 00:15:14,360 --> 00:15:17,000 you it's factor nine deficiency. But if you 414 00:15:17,000 --> 00:15:19,000 make a medical alert that says factor nine 415 00:15:19,000 --> 00:15:20,620 deficiency and the percentage, 416 00:15:20,975 --> 00:15:23,375 it is a clear message. It is a 417 00:15:23,375 --> 00:15:25,554 clear statement, and it provides that information. 418 00:15:26,014 --> 00:15:28,175 And these women then came back and told 419 00:15:28,175 --> 00:15:29,855 me, well, they saw that it was factor 420 00:15:29,855 --> 00:15:32,014 eight deficiency, but that didn't clue them into 421 00:15:32,014 --> 00:15:34,195 that it was hemophilia and all the stigma 422 00:15:34,620 --> 00:15:36,779 that comes with that word. And so all 423 00:15:36,779 --> 00:15:38,639 they saw was it was factor eight deficiency. 424 00:15:38,779 --> 00:15:40,240 I better make a call. 425 00:15:40,620 --> 00:15:43,120 And that changed everything for them. Just 426 00:15:43,740 --> 00:15:45,279 semantically, that language 427 00:15:45,899 --> 00:15:48,559 improved their odds of having a better outcome. 428 00:15:49,225 --> 00:15:50,585 Yeah. I know. It's so interesting because so 429 00:15:50,585 --> 00:15:52,985 many of the interviews I've conducted, there there 430 00:15:52,985 --> 00:15:55,065 is the knowledge gap with a lot of 431 00:15:55,065 --> 00:15:57,325 healthcare providers when it comes to hemophilia. 432 00:15:57,945 --> 00:16:00,745 And I think it's so incredible that just 433 00:16:00,745 --> 00:16:02,845 these tiny shifts in language 434 00:16:03,279 --> 00:16:05,279 can get you the care you need. I 435 00:16:05,279 --> 00:16:08,159 know specifically, like, with EMS services, there there 436 00:16:08,159 --> 00:16:10,559 are some that don't even they can't even 437 00:16:10,559 --> 00:16:13,620 treat a hemophilia exist or a hemophilia incident, 438 00:16:13,919 --> 00:16:16,659 because it's not taught. Right? And 439 00:16:17,054 --> 00:16:18,595 going back to that word carrier 440 00:16:19,054 --> 00:16:20,034 versus trait, 441 00:16:20,495 --> 00:16:21,075 you know, 442 00:16:21,455 --> 00:16:23,455 to me, it seems like carrier almost assigns 443 00:16:23,455 --> 00:16:23,955 fault 444 00:16:24,414 --> 00:16:24,914 to 445 00:16:25,294 --> 00:16:25,774 to, 446 00:16:26,095 --> 00:16:27,934 you know, the mom and maybe speak a 447 00:16:27,934 --> 00:16:28,914 little bit to that. 448 00:16:29,600 --> 00:16:31,679 Yeah. I mean, so women have carried this 449 00:16:31,679 --> 00:16:34,740 burden of guilt for since it's been documented, 450 00:16:34,959 --> 00:16:38,000 and not even the queen could, as a 451 00:16:38,000 --> 00:16:40,320 as a queen of an entire country, try 452 00:16:40,320 --> 00:16:44,274 to escape fault. So they blamed Leopold's condition 453 00:16:44,335 --> 00:16:47,295 on her desire to have pain control during 454 00:16:47,295 --> 00:16:49,455 childbirth. So if you can imagine being the 455 00:16:49,455 --> 00:16:51,535 queen of a country and having your son's 456 00:16:51,535 --> 00:16:54,659 disorder being blamed on your pain control. And 457 00:16:54,659 --> 00:16:56,919 so the guilt is goes way back and 458 00:16:57,139 --> 00:16:58,899 they carry this forward and it gets carried 459 00:16:58,899 --> 00:17:01,379 through as generational trauma. Mhmm. But I always 460 00:17:01,379 --> 00:17:04,179 have to remind people, men and women pass 461 00:17:04,179 --> 00:17:05,640 this on genetically, 462 00:17:06,500 --> 00:17:08,419 fathers pass it on, but we don't talk 463 00:17:08,419 --> 00:17:12,075 about father guilt. And I recognize that for 464 00:17:12,075 --> 00:17:15,035 men, this is a very important gap that 465 00:17:15,035 --> 00:17:16,634 they have as well that we are not 466 00:17:16,634 --> 00:17:18,634 addressing. So there are men who, in my 467 00:17:18,634 --> 00:17:19,134 opinion, 468 00:17:19,674 --> 00:17:21,615 would benefit from these conversations 469 00:17:21,914 --> 00:17:23,835 as well because they're passing this on and 470 00:17:23,835 --> 00:17:26,230 seeing the suffering of their daughters. But everyone 471 00:17:26,230 --> 00:17:28,710 talks about, you know, women's guilt and passing 472 00:17:28,710 --> 00:17:31,849 it on, and everybody passes this this genetic 473 00:17:32,309 --> 00:17:34,150 trait on. And I know one thing you 474 00:17:34,150 --> 00:17:35,589 wanted to touch on was the idea of, 475 00:17:35,589 --> 00:17:37,750 like, oral contraception. So talk to us a 476 00:17:37,750 --> 00:17:39,664 little bit about, like, the stigma there in 477 00:17:39,664 --> 00:17:41,825 clinical discussions, and I guess the context is 478 00:17:41,825 --> 00:17:44,164 when it's being used as bleeding management, 479 00:17:44,545 --> 00:17:46,005 not necessarily contraception. 480 00:17:46,944 --> 00:17:48,944 Yeah. So that's another one that is a 481 00:17:48,944 --> 00:17:51,025 great example to kinda go back to what 482 00:17:51,025 --> 00:17:52,404 you had spoken of before. 483 00:17:52,720 --> 00:17:54,820 It assigns this idea 484 00:17:55,200 --> 00:17:57,519 of the outcome. So it assigns this blame 485 00:17:57,519 --> 00:17:58,259 of, like, 486 00:17:58,640 --> 00:18:00,100 they're using it for, 487 00:18:00,559 --> 00:18:01,059 sexual 488 00:18:01,680 --> 00:18:04,720 reasons, and they're being promiscuous. And so, therefore, 489 00:18:04,720 --> 00:18:06,640 they are on it, and it's being used 490 00:18:06,640 --> 00:18:09,684 for birth control and all that that entails 491 00:18:09,745 --> 00:18:11,505 with it and all of the access that 492 00:18:11,505 --> 00:18:14,485 can be limited by that particular use. 493 00:18:14,865 --> 00:18:17,184 And in this setting, we're using it for 494 00:18:17,184 --> 00:18:17,684 hemostatic 495 00:18:18,065 --> 00:18:18,565 control. 496 00:18:19,025 --> 00:18:21,045 So we are not using it to prevent 497 00:18:21,450 --> 00:18:24,009 birth. We inform and educate women that a 498 00:18:24,009 --> 00:18:25,470 side effect of this treatment 499 00:18:25,929 --> 00:18:28,809 results in the decreased potential for them to 500 00:18:28,809 --> 00:18:30,809 become pregnant. But we have a lot of 501 00:18:30,809 --> 00:18:31,630 other medications 502 00:18:32,250 --> 00:18:33,149 that could accidentally 503 00:18:33,529 --> 00:18:34,669 terminate a 504 00:18:34,994 --> 00:18:37,954 pregnancy or cause issues as well, and we 505 00:18:37,954 --> 00:18:40,914 don't label them by their outcome. It is 506 00:18:40,914 --> 00:18:42,934 only in oral contraceptives 507 00:18:43,315 --> 00:18:46,434 that we assign this notation to what it's 508 00:18:46,434 --> 00:18:47,174 used for 509 00:18:47,549 --> 00:18:48,769 as opposed to, 510 00:18:49,549 --> 00:18:52,529 other medications that we do not ascribe this 511 00:18:52,670 --> 00:18:53,410 sort of, 512 00:18:54,430 --> 00:18:54,930 symbolism 513 00:18:55,230 --> 00:18:57,470 to it. And so I use the term 514 00:18:57,470 --> 00:18:59,809 hormones because they are hormones 515 00:19:00,110 --> 00:19:02,125 at the end of the day. Just as 516 00:19:02,125 --> 00:19:02,625 testosterone 517 00:19:03,325 --> 00:19:05,825 is a hormone, estrogen is a hormone, 518 00:19:06,125 --> 00:19:09,265 and progesterone is a hormone, and men have 519 00:19:09,325 --> 00:19:12,365 these hormones too. And that's interesting that I 520 00:19:12,365 --> 00:19:14,990 always encounter that people forget that. They think 521 00:19:14,990 --> 00:19:16,909 men only have testosterone and women only have 522 00:19:16,909 --> 00:19:19,549 estrogen and progesterone, but that's not the case. 523 00:19:19,549 --> 00:19:20,690 We both have 524 00:19:21,230 --> 00:19:22,750 but we have all three. And so if 525 00:19:22,750 --> 00:19:26,269 you treat someone, you're utilizing hormones to get 526 00:19:26,269 --> 00:19:27,329 to a certain outcome. 527 00:19:27,630 --> 00:19:29,169 Again, is in such a brilliant, 528 00:19:29,714 --> 00:19:30,214 simple 529 00:19:30,674 --> 00:19:33,554 pivot away to to a a semantic that 530 00:19:33,554 --> 00:19:35,954 is is just less of a stigma. Right? 531 00:19:35,954 --> 00:19:37,394 And and whether you agree with the the 532 00:19:37,394 --> 00:19:39,875 stigma or not, it it it it is 533 00:19:39,875 --> 00:19:40,755 there. Right? It's, 534 00:19:41,394 --> 00:19:43,690 it it's really it's really brilliant work. So 535 00:19:43,690 --> 00:19:46,169 can we, let's just focus and talk specifically 536 00:19:46,169 --> 00:19:48,250 about the hemophilia b community. And first, I 537 00:19:48,250 --> 00:19:49,769 wanna ask, how did you get connected to 538 00:19:49,769 --> 00:19:51,069 the hemophilia b community? 539 00:19:51,769 --> 00:19:54,250 Yeah. So I can't recall what year it 540 00:19:54,250 --> 00:19:55,929 was and how it might have been at 541 00:19:55,929 --> 00:19:56,429 least 542 00:19:57,015 --> 00:19:57,994 eight years ago. 543 00:19:58,455 --> 00:19:59,755 I was contacted 544 00:20:00,055 --> 00:20:03,255 by a member who said, I heard you 545 00:20:03,255 --> 00:20:06,214 have this presentation for women that talks about 546 00:20:06,214 --> 00:20:07,914 sexual health and bleeding disorders, 547 00:20:08,295 --> 00:20:11,789 but does not undervalue it or speak of 548 00:20:11,789 --> 00:20:12,690 it superficially. 549 00:20:13,390 --> 00:20:15,309 And I said that is accurate. I do 550 00:20:15,309 --> 00:20:17,730 have a very medically accurate presentation 551 00:20:18,109 --> 00:20:20,690 for women to understand bleeding that can incur 552 00:20:20,909 --> 00:20:22,049 during sexual intercourse. 553 00:20:22,349 --> 00:20:23,869 And so they flew me out to one 554 00:20:23,869 --> 00:20:26,475 of your guys' national conferences, and I spoke 555 00:20:26,475 --> 00:20:28,894 on it. And it was a great opportunity 556 00:20:29,035 --> 00:20:31,035 to bring that education, and I still to 557 00:20:31,035 --> 00:20:31,695 this day 558 00:20:32,075 --> 00:20:35,295 provide that content because it's been well requested. 559 00:20:35,595 --> 00:20:38,335 It's been interesting journey with that content because 560 00:20:38,819 --> 00:20:41,399 many patients had asked, you know, national organizations 561 00:20:41,779 --> 00:20:44,759 to provide the content, and some outright said 562 00:20:44,819 --> 00:20:46,579 those years ago that they didn't wanna be 563 00:20:46,579 --> 00:20:47,079 associated 564 00:20:47,859 --> 00:20:49,480 with the stigma of the content. 565 00:20:50,579 --> 00:20:52,579 Some manufacturers had said that they did not 566 00:20:52,579 --> 00:20:54,765 wanna be associated either. So it was an 567 00:20:54,765 --> 00:20:56,765 interesting journey for me hearing all these no, 568 00:20:56,765 --> 00:20:58,625 no, no, no, no, no's. And then finally, 569 00:20:59,005 --> 00:21:01,164 some people who were like, people are asking 570 00:21:01,164 --> 00:21:03,085 for this. Let's bring them the content. So 571 00:21:03,085 --> 00:21:04,224 those early pioneers 572 00:21:04,525 --> 00:21:07,950 in in this organization who said, let's bring 573 00:21:07,950 --> 00:21:09,869 let's bring her out. This is a risk 574 00:21:09,869 --> 00:21:12,429 that we're gonna take and see what happens. 575 00:21:12,429 --> 00:21:14,429 And then it just kinda grew and blossomed 576 00:21:14,429 --> 00:21:15,169 from there. 577 00:21:15,470 --> 00:21:17,230 Yeah. And I I think it also speaks 578 00:21:17,230 --> 00:21:18,450 to, you know, the coalition. 579 00:21:19,710 --> 00:21:20,690 It's real life. 580 00:21:21,654 --> 00:21:24,154 We bring discussions, we bring education because, 581 00:21:24,855 --> 00:21:25,994 that's what we're experiencing 582 00:21:26,295 --> 00:21:29,095 and we can't shy away from the stigmas 583 00:21:29,095 --> 00:21:32,455 or what society chooses to label something as. 584 00:21:32,455 --> 00:21:34,455 So, you know, again, the fact that you 585 00:21:34,455 --> 00:21:36,750 are in this community and welcome and continue 586 00:21:36,750 --> 00:21:39,549 to provide such important education is just so 587 00:21:39,549 --> 00:21:41,089 incredible. So I guess maybe 588 00:21:42,029 --> 00:21:43,490 what do you feel like is 589 00:21:43,869 --> 00:21:45,089 the biggest problem, 590 00:21:45,630 --> 00:21:48,190 or hurdle maybe semantically or or in the 591 00:21:48,190 --> 00:21:49,089 doctor's office 592 00:21:49,525 --> 00:21:51,285 when it comes to hemophilia b? I think 593 00:21:51,285 --> 00:21:51,944 the challenge 594 00:21:52,565 --> 00:21:54,964 really at this point in time is where 595 00:21:54,964 --> 00:21:57,464 do we go from here? In my opinion, 596 00:21:58,085 --> 00:21:58,825 the comprehensive 597 00:21:59,125 --> 00:21:59,625 model 598 00:22:00,005 --> 00:22:02,724 was really needed and effective for the time 599 00:22:02,724 --> 00:22:03,865 in which it was implemented. 600 00:22:04,470 --> 00:22:06,250 But in 2026, 601 00:22:06,390 --> 00:22:08,630 is this the most efficient care to not 602 00:22:08,630 --> 00:22:10,869 only get the outcomes that we need, but 603 00:22:10,869 --> 00:22:11,369 provide 604 00:22:11,910 --> 00:22:13,929 that care in a meaningful way? 605 00:22:14,230 --> 00:22:15,990 And what I mean by that is, you 606 00:22:15,990 --> 00:22:19,130 know, with lower joint bleeds is a requirement 607 00:22:19,269 --> 00:22:20,775 to say you have to see a physical 608 00:22:20,775 --> 00:22:22,535 therapist or you have to see, you know, 609 00:22:22,535 --> 00:22:24,695 a social worker. Is that does that need 610 00:22:24,695 --> 00:22:27,414 to move into a model that meets the 611 00:22:27,414 --> 00:22:29,815 needs of people in today's time? I don't 612 00:22:29,815 --> 00:22:31,515 think that it has evolved 613 00:22:31,975 --> 00:22:34,769 to meet those needs. In Europe, and this 614 00:22:34,769 --> 00:22:37,329 was just, presented at EHAD, they are moving 615 00:22:37,329 --> 00:22:38,549 towards an accountability 616 00:22:39,089 --> 00:22:41,589 of their national centers. So they're standardizing 617 00:22:42,529 --> 00:22:45,829 their centers because what often happens is 618 00:22:46,875 --> 00:22:48,335 experiences vary widely. 619 00:22:48,955 --> 00:22:52,394 They vary regionally, and that really shouldn't happen. 620 00:22:52,394 --> 00:22:53,695 There should be a 621 00:22:54,475 --> 00:22:57,055 expectation of care that you will receive 622 00:22:57,434 --> 00:23:00,315 when you are accessing institutions that are centers 623 00:23:00,315 --> 00:23:02,720 of excellence. And so there should be a 624 00:23:02,720 --> 00:23:03,220 standardized 625 00:23:03,919 --> 00:23:06,079 guideline that is agreed upon, and then those 626 00:23:06,079 --> 00:23:06,980 can be evaluated 627 00:23:07,279 --> 00:23:08,960 to see whether or not they're meeting that 628 00:23:08,960 --> 00:23:09,460 metric 629 00:23:10,000 --> 00:23:11,839 or not. So that's a great way to 630 00:23:11,839 --> 00:23:12,339 say, 631 00:23:12,799 --> 00:23:15,924 yes. This matters, and, yes, it is impactful 632 00:23:16,144 --> 00:23:18,704 versus just, yes. It matters. Right now in 633 00:23:18,704 --> 00:23:20,785 The US, there really isn't the second step 634 00:23:20,785 --> 00:23:21,285 of 635 00:23:21,744 --> 00:23:24,384 is this being effective. And we have a 636 00:23:24,384 --> 00:23:27,585 real big equity problem with women and their 637 00:23:27,585 --> 00:23:28,724 ability to access 638 00:23:29,170 --> 00:23:31,570 the same equitable level of care that we 639 00:23:31,570 --> 00:23:33,990 provide men. And so these women 640 00:23:34,450 --> 00:23:36,230 sit outside of a system 641 00:23:36,609 --> 00:23:39,329 that was not designed to exclude them, but 642 00:23:39,329 --> 00:23:41,910 it has over time evolved that way. 643 00:23:42,644 --> 00:23:43,144 Yeah. 644 00:23:43,525 --> 00:23:44,724 And I I think one thing that comes 645 00:23:44,724 --> 00:23:46,085 to mind, and I believe it's within the 646 00:23:46,085 --> 00:23:46,585 last, 647 00:23:47,045 --> 00:23:49,045 I wanna say three years, but they finally 648 00:23:49,045 --> 00:23:49,945 started testing, 649 00:23:50,325 --> 00:23:53,144 you know, menstrual products with actual blood. 650 00:23:53,765 --> 00:23:55,045 You know, that was something 651 00:23:55,605 --> 00:23:56,505 have you heard that? 652 00:23:57,339 --> 00:23:59,099 Yeah. So I actually bring this up in 653 00:23:59,099 --> 00:24:01,819 my ministration presentation, the idea that, you know, 654 00:24:01,819 --> 00:24:03,500 we are not Smurfs and we do not 655 00:24:03,500 --> 00:24:04,639 bleed blue. 656 00:24:05,019 --> 00:24:06,799 We need accurate presentation 657 00:24:07,259 --> 00:24:08,559 even within commercials. 658 00:24:08,859 --> 00:24:11,259 But, yes, even the absorptive nature of the 659 00:24:11,259 --> 00:24:13,174 products that are utilized 660 00:24:13,954 --> 00:24:15,634 and how they are built, what they are 661 00:24:15,634 --> 00:24:18,375 made with, because sometimes they're made with formaldehyde, 662 00:24:18,514 --> 00:24:21,234 which is not something you should continuously expose 663 00:24:21,234 --> 00:24:24,595 somebody to. But in bleeding disorders, people sometimes 664 00:24:24,595 --> 00:24:26,274 will have really long periods if they're not 665 00:24:26,355 --> 00:24:28,880 if they don't have good management and care, 666 00:24:28,880 --> 00:24:30,640 so they have to use these products with 667 00:24:30,640 --> 00:24:32,640 an exposure that is much higher than any 668 00:24:32,640 --> 00:24:34,559 other woman who would be utilizing them. And 669 00:24:34,559 --> 00:24:37,519 so it is advancing. I really appreciate that 670 00:24:37,519 --> 00:24:39,679 there's much more options for women than there 671 00:24:39,679 --> 00:24:40,660 ever was before, 672 00:24:41,044 --> 00:24:43,784 But I also worry because with more options 673 00:24:44,085 --> 00:24:46,484 and more protection, there is ability to hide 674 00:24:46,484 --> 00:24:49,065 it more. So women have this notion that 675 00:24:49,125 --> 00:24:49,625 using 676 00:24:50,085 --> 00:24:52,005 a pad and a tampon as a bleeding 677 00:24:52,005 --> 00:24:54,565 disorder as a patient is completely normal, and 678 00:24:54,565 --> 00:24:57,200 it is not. Wearing an overnight diaper while 679 00:24:57,200 --> 00:24:59,119 it protects your sheet and your bed does 680 00:24:59,119 --> 00:25:01,139 nothing to protect your quality of life. 681 00:25:01,440 --> 00:25:03,599 And so while the products are improving, the 682 00:25:03,599 --> 00:25:06,259 chair is not behind it improving as well. 683 00:25:06,639 --> 00:25:07,139 So 684 00:25:07,519 --> 00:25:09,005 I guess as we kind of start to 685 00:25:09,005 --> 00:25:11,085 wrap up here, can you maybe highlight a 686 00:25:11,085 --> 00:25:11,984 story or, 687 00:25:12,365 --> 00:25:14,044 you know, a personal moment that kind of 688 00:25:14,044 --> 00:25:17,025 illustrates why this matters so deeply to you? 689 00:25:17,724 --> 00:25:20,670 Yeah. I mean, there are so many to 690 00:25:20,670 --> 00:25:24,769 speak on, but when you have a woman 691 00:25:24,830 --> 00:25:27,150 who comes to you and I've had many 692 00:25:27,150 --> 00:25:27,650 where 693 00:25:28,109 --> 00:25:30,590 in the beginning session, it's it's, you know, 694 00:25:30,590 --> 00:25:33,070 they feel bad because they they're very angry, 695 00:25:33,070 --> 00:25:34,509 and they may even yell at you. And 696 00:25:34,509 --> 00:25:37,644 some clinicians have much discomfort around that. And 697 00:25:37,644 --> 00:25:39,805 they're not yelling at you. They're yelling with 698 00:25:39,805 --> 00:25:41,884 the generations of past that are showing up 699 00:25:41,884 --> 00:25:43,884 with them as I discussed before. So as 700 00:25:43,884 --> 00:25:45,404 a clinician, you have to be strong enough 701 00:25:45,404 --> 00:25:47,184 to recognize that this is their 702 00:25:47,485 --> 00:25:49,485 venting, move forward. And then once you get 703 00:25:49,485 --> 00:25:51,869 to the next appointment and you start talking 704 00:25:51,869 --> 00:25:53,549 about, you know, where are we with your 705 00:25:53,549 --> 00:25:55,869 levels, what is the plan, here are the 706 00:25:55,869 --> 00:25:58,429 risks, here are the benefits. But the the 707 00:25:58,429 --> 00:26:00,990 really monumental piece for me is the patients 708 00:26:00,990 --> 00:26:01,490 who 709 00:26:01,869 --> 00:26:04,109 actually it it's changed the very fiber of 710 00:26:04,109 --> 00:26:06,664 who they are, which sounds very grandiose. 711 00:26:07,045 --> 00:26:09,205 But I've had patients where when you get 712 00:26:09,205 --> 00:26:11,765 them fully recovered and they've, for the first 713 00:26:11,765 --> 00:26:14,565 time, stepped out of iron deficiency anemia for 714 00:26:14,565 --> 00:26:16,325 the first time in twenty years and they 715 00:26:16,325 --> 00:26:18,184 remember who they are, 716 00:26:18,529 --> 00:26:21,009 it's a phenomenal experience to walk that path 717 00:26:21,009 --> 00:26:22,389 with them because they've forgotten 718 00:26:23,089 --> 00:26:24,710 what it felt like to be 719 00:26:25,089 --> 00:26:25,589 normal. 720 00:26:25,970 --> 00:26:27,730 And I don't think that's anything that you 721 00:26:27,730 --> 00:26:30,529 can really describe to someone. You have to 722 00:26:30,529 --> 00:26:33,555 see it for yourself. But seeing those moments 723 00:26:33,555 --> 00:26:36,994 where finally with treatment and removal of iron 724 00:26:36,994 --> 00:26:39,715 deficiency, which causes so many issues for so 725 00:26:39,715 --> 00:26:40,615 many of these 726 00:26:40,914 --> 00:26:43,474 women that expands beyond what you think it 727 00:26:43,474 --> 00:26:45,769 would, it changes it can change their whole 728 00:26:45,769 --> 00:26:47,549 personality. And it's an interesting 729 00:26:48,009 --> 00:26:50,329 it's an interesting concept to know that perhaps 730 00:26:50,329 --> 00:26:52,970 we don't even know these women because we 731 00:26:52,970 --> 00:26:55,049 haven't provided them the tools to show up 732 00:26:55,049 --> 00:26:55,789 as themselves. 733 00:26:56,424 --> 00:26:58,144 Yeah. And I'm sure those moments are kind 734 00:26:58,144 --> 00:26:59,785 of what help you get out of bed 735 00:26:59,785 --> 00:27:00,525 some mornings. 736 00:27:01,065 --> 00:27:03,325 Yes. Absolutely. Because there are still the barriers 737 00:27:03,384 --> 00:27:06,045 and the other things that, we have to, 738 00:27:06,744 --> 00:27:09,299 overcome. And so those are the the moments 739 00:27:09,299 --> 00:27:11,059 where you're like, okay. This is this is 740 00:27:11,059 --> 00:27:14,200 possible, and every person deserves this opportunity 741 00:27:14,659 --> 00:27:17,539 to experience the same thing. Absolutely. I guess 742 00:27:17,539 --> 00:27:19,299 as we wrap up, what what's your message 743 00:27:19,299 --> 00:27:20,980 of of hope right now in in the 744 00:27:20,980 --> 00:27:23,880 bleeding disorder space, especially for women and girls? 745 00:27:24,625 --> 00:27:26,404 Yeah. I think we are well positioned 746 00:27:26,944 --> 00:27:29,184 at this time period to really get to 747 00:27:29,184 --> 00:27:31,105 a point where we're making real progress and 748 00:27:31,105 --> 00:27:33,044 not just having PR conversations 749 00:27:33,345 --> 00:27:35,825 about women with bleeding disorders, you know, being 750 00:27:35,825 --> 00:27:38,500 in vogue. I know some programs have existed 751 00:27:38,559 --> 00:27:40,880 for fifteen or twenty years, but really haven't 752 00:27:40,880 --> 00:27:42,480 moved the needle. So I do feel like 753 00:27:42,480 --> 00:27:45,359 now we are in that position to really 754 00:27:45,359 --> 00:27:47,599 get that moving forward, and it is my 755 00:27:47,599 --> 00:27:50,159 hope that women have not lost hope and 756 00:27:50,159 --> 00:27:50,899 can also 757 00:27:51,295 --> 00:27:53,615 drive that change right along with everything else. 758 00:27:53,615 --> 00:27:55,535 So I am more hopeful than I have 759 00:27:55,535 --> 00:27:57,855 been in the past with the caveat that 760 00:27:57,855 --> 00:28:00,494 I recognize that challenges still exist. Thank you 761 00:28:00,494 --> 00:28:02,494 so much for being here today on what 762 00:28:02,494 --> 00:28:04,095 I assume is a lunch break. So I 763 00:28:04,095 --> 00:28:05,154 hope that you can 764 00:28:05,535 --> 00:28:06,255 go back, 765 00:28:07,019 --> 00:28:08,700 to to lunch before you you have finished 766 00:28:08,700 --> 00:28:10,460 the rest of your day. And thank you 767 00:28:10,460 --> 00:28:12,299 again so much for being here, Doctor. Amber 768 00:28:12,299 --> 00:28:15,119 Federizo. Thank you for having me. Of course. 769 00:28:15,259 --> 00:28:17,420 This has been Boundless Bee, the Hemophilia B 770 00:28:17,420 --> 00:28:19,500 Podcast, the podcast standing with you from a 771 00:28:19,500 --> 00:28:21,775 family like yours presented by the Coalition for 772 00:28:21,775 --> 00:28:24,335 Hemophilia B and in partnership with Balancing Life's 773 00:28:24,335 --> 00:28:24,835 Issues. 774 00:28:25,214 --> 00:28:26,894 To learn more about how to advocate for 775 00:28:26,894 --> 00:28:28,734 yourself or someone you love and to stay 776 00:28:28,734 --> 00:28:31,555 connected to your community, visit hemob.org. 777 00:28:41,200 --> 00:28:43,200 Thank you for listening to Boundless Bee, the 778 00:28:43,200 --> 00:28:46,160 Hemophilia Bee podcast. The podcast standing with you 779 00:28:46,160 --> 00:28:48,320 from a family like yours, presented by the 780 00:28:48,320 --> 00:28:51,105 Coalition for Hemophilia Bee and in partnership with 781 00:28:51,105 --> 00:28:54,144 Balancing Life's Issues. Produced by me, Kai. Got 782 00:28:54,144 --> 00:28:55,904 an idea for the show? Send us an 783 00:28:55,904 --> 00:28:58,328 email at podcast@hemob.org, 784 00:28:58,408 --> 00:29:00,169 and don't forget to stay connected to your 785 00:29:00,169 --> 00:29:02,808 community at hemo b dot org. Anything else 786 00:29:02,808 --> 00:29:03,628 to add, Miles?