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Hope Charities
Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.
Hope Charities
Women with Bleeding Disorders: Empathy and Innovation in Patient Care
This episode focuses on the often-overlooked experiences of women with bleeding disorders. Dr. Akshat Jain discusses the importance of advocacy, the need for gender-sensitive healthcare approaches, and how quality of life relates to treatment accessibility, emphasizing the urgency of creating a supportive environment for patients.
• Dr. Jain’s background and expertise in bleeding disorders
• Advocacy importance for women with bleeding disorders
• Cultural stigmas and challenges women face in seeking care
• Quality of life concerns in the context of bleeding disorders
• The role of mental health support in comprehensive care
• Managing pregnancy risks in women with bleeding disorders
• The necessity of community advocacy and proactive outreach
Welcome to the Hope Podcast. My name is Jonathan James and I am proud to be your host today to talk a little bit more in this series about women with bleeding disorders. Today I want to say a big thank you to our episode sponsor, genentech, for sponsoring more educational content like this that we can use to support many more people living with bleeding disorders. We want to say a big thank you Today. I'm really excited about a special guest that I've invited to speak with me today about this topic in so much depth. Dr Akshat Jain, it is great to see you today. Thank you so much for joining us for the Hope Podcast.
Speaker 2:Thank you very much. I'm so happy to be here in person and doing this.
Speaker 1:Yeah, it's exciting. It really is. There's so many things to talk about. I am always inspired every time I get a chance to listen to you give a presentation at a meeting, or even some of the educational things you've done for us and our patient community. I just am so inspired by your passion and your dedication and you go the extra mile. Matter of fact, I think you probably go extra two or three or five miles because there's just so much passion in your heart that really you can tell that you connect to the humanity that we serve, and I think every physician starts out that way. But the road is long and it's hard and there's a lot of things to juggle and you do such a beautiful job at keeping people at the center of your work.
Speaker 2:So really excited who treat people with blood disorders. It will not be possible if community messaging and advocacy doesn't happen. And what you do in a very unique format is something so special and I put power to you.
Speaker 1:Thank you so much. Well, it's a labor of love, as it is for you, and I just you know I'm excited to see you know where we can bend the future for our community, Because one of the things I think is so unique about the work that you do is you're seeing such a large volume of patients day in and day out, and I think you have a unique perspective because of some of the type of people that you're seeing every day are people that largely have been sort of overlooked in the past. So I want to dive into a lot of that Before we do. Maybe someone's listening to that You're famous in my house and in Hopeland over here, but maybe people are watching this or listening to this right now and they've never heard of Dr Jane, and so they want to know more. So tell us a little bit about where you're from, and really you know where you practice, Sure.
Speaker 2:Absolutely. Yeah, very likely people have not heard about me, and that's a good thing, I think, but I am a pediatric hematologist oncologist by training, but by default take care of people with blood disorders of all ages, specifically with the bleeding disorders. Bleeding disorders I was born and I grew up in India to a fortunate family with blessings from parents who are in the field in healthcare, very well known at their art and having been sensitized to caring for the suffering by the dozens on a daily basis. Um, and something that really had the major impression on what you want to do or what you, you, you, what I wish to do with my life moving forward, seeing that up close, suffering to the point where what we consider luxury is lost on most of the patients around the world, and something that I could see up close.
Speaker 2:I had the good fortune of doing my med school in Africa, so I spent a good part of my medical beginnings in Africa learning the tricks of the trade being a physician and learning from the best in that part right smack in the middle of the HIV epidemic, which did affect a lot of our patients with bleeding disorders.
Speaker 2:It was a global phenomenon, but it did affect every aspect of patient care and challenged the social fiber globally, including resource-limited settings in Africa.
Speaker 2:So having that exposure and top-level education really pumped me to move forward to the United States to get even more advanced training and try to address some of those concerns.
Speaker 2:I had seen growing up, specifically people who are under-resourced and from areas where representation of people coming from backgrounds which are not as privileged is always a challenge to access healthcare. For the past 20 years being in the United States, I think I have offered care to patients with blood disorders, first on the East Coast in New York and now in California, helping run the bleeding disorder and the blood disorder program in Southern California. I think I find myself uniquely situated in Southern California to offer a wide range of services, including diagnostics, cure, everything from simple therapies to advanced gene therapies, all in an order and with the mission of making man whole, finding an opportunity to get population in that part of the country which is still underserved San Bernardino County and parts of Southern California where people suffer from severe bleeding and blood disorders, sometimes not having a voice. So having an opportunity to be an advocate and to create something that is self-sufficient in a way to offer therapy has really been an honor of my life and I continue to work to improve that on a daily basis.
Speaker 1:It's so amazing. I know that you learned from one of my good friends, our mutual friend and really heroes in our community. I know so many of the people that we serve adore Dr Claudio Sandoval and you studied with him and trained with him at one point, didn't you? In New York 100%.
Speaker 2:Claudio Sandoval, to this day, continues to be my mentor and the person that he is, with the passion that he has for the disease in the community, whether it was learning oncology care for children with him and or learning the nuances of management of hemophilia as a teacher, I hope and strive that I do justice to that role that I find myself in now for the next generation of blood disorder specialists, and I think he's a fabulous person to know and I'm proud to call him my friend, as I know you do.
Speaker 1:Well, it's true, but I often say and I know you share the sentiment, but it's not just an issue of having a mentor that you look up to, but it's also just an issue of, you know, having a mentor that you look up to. But it's also birds of a feather flock together, right? I mean, it was probably, you know, divine intervention that you were able to connect with them, because there are some people that are just so dedicated to the human value of what we do and what you do as a physician is not just entirely about science, it's also about just things like quality of life and the care of the human capacity, and Dr Claudio embodies that. And when he began to tell me about your background and his work and your work together, even when you were with him, I just thought, oh my gosh, I instantly knew your character and who you are as a physician. And then, of course, I've seen that displayed over the last few years and since we've been doing things together too.
Speaker 2:And again, which is why I think this platform that you have at Hope, what you've been doing at Hope, is just so powerful that it gets people with the energies together. The people there are great physicians, and I have many of those that I am honored to call mentors and friend and colleagues. And then there are people who have the energy, the spark, to actually influence change in the ecosystem. And you need to be motivated. You know, multiple cups of caffeine may still not power you, maybe empower you through the day, but how do you power a change? And I'm honored to work with people and I must tell the story now.
Speaker 2:Seven years ago I was tasked to start a blood disorder program.
Speaker 2:I was hired from New York to come to California to start something and just this year, year 2024, two of my staff members, two of my staff members that I work with in our pediatric hematology oncology enterprise, were referred to us and almost correctly diagnosed with the exact subtype of von Willebrand disease. By knowing within, by having a conversation within the office space, in that office tables, just by the awareness and the infrastructure that we have created in our little niche in the clinic. Two people within our space, people that I and everybody else in our office works together got to the diagnosis of a blood disorder. Because they've heard about our work that we have done with population, our resources that we've developed in Spanish and in Asian dialects, all the diverse population that we serve, they had the courage to come up and say, oh, I think I have a bleeding disorder and I think, from what I've heard from you, dr Jain, and the staff, I want to be checked out for it and ended up having one and now are in a much better space.
Speaker 1:Right, unexplainable symptoms they've probably been living with their whole lifetime. But then, being immersed in that environment, they felt the confidence to say, wait a minute, that that might be me. And then here they are in your, in your own environment, and didn't even know until they asked.
Speaker 2:Absolutely.
Speaker 2:Colleagues, and our staffers, who are now our patients, have really taken advantage of the knowledge base, the awareness and the spark, the energy that we have created to say, hey, you know what it starts with me If I have the courage to go and get and seek care and advocate for myself this culture.
Speaker 2:I think that's the biggest success. I think that I can contribute to my teachers to say we've created something where we are inspiring people within our space alone to get to a point where they can say, okay, I did it, it worked for me, Let me now go out in the community. So this spark that I got from my teachers has now created an awareness and has created a change in culture, which I think is the most powerful thing. And that's something that you are doing at Hope to inspire that change, to finding giving people a platform to talk about it and influence, change that ecosystem, and I think that's I really value that and I can't compliment you enough. But this example has just given me more power to say what we are doing goes beyond writing scripts and examining patients, but also to influence a culture, to address these disorders that are around us, surround us and affect our mothers, sisters, daughters, brothers, uncles and fathers all around in our community, and it's very powerful.
Speaker 1:So amazing I think that that's a driving force for us is just how can we influence change for our culture. Man, it's just so incredible just to see that you're out here advocating every day and treating people, and I love what you said about. It goes beyond writing a script. It's so much about we're really setting a precedent to give people permission to ask questions and to investigate people permission to ask questions and to investigate, but it really takes that the provider also to substitute to, to be willing to listen, entertain and also create a also a culture that it's a safe thing to investigate without the risk of being sort of turned away without investigation, and that that can be very disheartening to someone. It can take the fuel out of their, their fire. They've been told no and people don't understand their whole life, but then so they feel that way. But then when they feel a safe place to walk into, to say let me, this is safe for me to ask questions and it's okay if it's not. It's okay if it is, but like there may be solutions that can give me not just I want to make this point. I think this is important when I'm doing advocacy in Washington DC or with legislators, or even especially I just had a big meeting with a bunch of formulary folks, for instance.
Speaker 1:We talk about this term quality of life, qol. It's thrown around a lot, right? I do believe that some people have the perception, from a policy point of view, that anytime you're talking about QOL or quality of life, it's sort of like a conversation of luxury. It's like you just want more options. We talk about this with having options to different types of drugs. Not every drug works for every person the same way. Even though the FDA label says it a certain way, maybe your body and your biome doesn't interpret it that way, right. So we need options, right, and we need the patients to be able to voice what they're experiencing so that we can maybe try a different option that might have a higher level of efficacy. But those things, a lot of times I find sometimes even in the patient perception and at the clinic level, there's a sense of like. These are tensions that I'm suffering through with life, but it's not always about just going from. I was good.
Speaker 1:But in bleeding disorders, especially rare bleeding disorders, we're talking about somebody who has no quality of life and then all of a sudden now has the ability to live an almost normal lifestyle and it's like somebody wrote a million dollar check to empower you to go do your dreams because you are inhibited by your physical burden pain, inflammation, difficult emotional challenges, feeling the imposter syndrome, like you don't belong, you can't exist, cultivating and there's permission to say let's experiment, let's investigate, let's ask the questions and if they stick, they stick. If they don't, they don't. Well, we're going to provide the appropriate solution when the time is right. That cultural change is what's actually going to change. I think there's far more people living with bleeding disorders in America today, or even the world today, than we have any clue that are there. They're just suffering silently instead of being supported, and that's the kind of change that has to be made nurses know it very well, my students know it very well it's perfect to be imperfect.
Speaker 2:I love that when you say it's perfect, it's perfectly fine to be imperfect, I love that. That's where we start, that, where that's where the mend happens for you to make man whole. The purpose of why we do what we do on a daily basis, whether it's this side of the aisle or that side of the aisle, whether it's advocacy or clinical care, cannot be boxed in.
Speaker 1:Amen, that's so good.
Speaker 2:It has to be collaborative, it has to be symbiotic and it's perfect to be imperfect. Yes, when we start out with that level, set expectations, to say you are open, this is safe space for you to come and say that it is taboo in my community to talk about heavy periods. It's taboo to talk about within my community to say, hey, this is something that is bothering me, it is affecting the way I think, it's keeping me up at night. It's okay for me to say that these are things that are imperfections, but what is society has put limits on. But it's perfectly fine to to talk about it in this space, because I feel that I have a shot at getting to a point where these imperfections can be addressed. Those are beauty spots that we are all born with, whether it's a blood disorder or some other level of imperfection. That's what makes us human. That's so good.
Speaker 2:Having that pluralistic attitude towards human. This is is really what has powered us and at least my mission nationally, globally and every other aspect that I have an opportunity to advocate to say if 80% of women with hemophilia A who are carriers suffer from bleeding all throughout her life a known, accepted metric from publications why less than 20% of those women ever get access to care In a developed country or in a developing country? Why is that demographic disadvantaged? For every boy with hemophilia that is established at a hemophilia center of excellence in the United States, north America or wherever there is a mother that's sitting in the household suffering silently from bleeding, how do we change that? How do we empower that minority? That has been ignored very conveniently.
Speaker 2:But we understand the fact that somebody with hemophilia A, who's a carrier, who's a woman, may have factor levels that fluctuate with just by being human, by being a woman, by physiologic changes that comes with menstruation and pregnancy and age and puberty. That does not take away their right to get access to care because they still bleed. Factor level of 40% does not preclude them from not having long term joint damage. The conversation and the discussion that we have prompted people to think about which is mild and moderate hemophilia A boys equally and, more importantly, apply to those mothers so true who run the factor levels in the same ranges but then yet suffer silently. There is a known statistic with a paper done in 2026, 20, 2016. There is a prevalent data that demonstrates disparity in delay in diagnosis. A boy with severe hemophilia gets access to care with a median age time from birth to access to care about two and a half months of age. At two and a half months of age.
Speaker 1:Wow.
Speaker 2:For a symptomatic, severe hemophilia, a female. That number is five times higher, about eight and a half months to nine months of age, and they get access to first care to a bleeding disorder center or a referral to a center of excellence for hematology needs. Same level of bleeding, same factor level, clearly tells you that there is a six to seven month delay in getting access to care. Wow, same level of risk of damage to their joints, same risk of musculoskeletal and intracerebral brain bleeds applies to these two populations, albeit rare in women because of the genetics of severity in women. But it just goes to say that there is this prevalent norm that hemophilia affect boys and not girls and thereby does percolates down to every aspect of health care, whether it's an insurance company or whether it's a drug manufacturer, or if it's a physician, a colleague and physician, an advanced care provider out in the community. That is the prevalent notion that if there is a girl that's presenting with bleeding symptoms, even if she's screaming at the top of her voice saying I have hemophilia, is not taken seriously.
Speaker 1:And I mean just for people who maybe aren't familiar with this, the intricacies of this problem, I think, correct me if I'm wrong. I believe the majority of the reason why that is a common belief among treaters and maybe not even so much specialist with Humefield, but the broader sense of medicine and medical care, is largely because the literature has predominantly stated that point blank that it is a male predominant disease for decades, I mean for as long as we've known that this is a genetic disposition and what the challenges are associated. It really has been documented in the literature as such. So it's not unfounded that they would believe that. I think the tension is that we've got to change that and everyone wants to. Once they start to realize these things, I, I, I love you know some of those things I'm seeing change. You know we're going to talk about a little bit about masek. Just had recently a document on uh, there's two 280 not 286 document 286. Specifically speaking to that. They I think it was in there and again I might be misqu, I think this is correct is something like anyone that has less than 100% factor level that specifically they identify this women have a 70% chance of having some type of bleeding symptom, even if they have more than 50% factor level, essentially. So there's an occasion that's being identified here that it doesn't have to be your typical, you know, male, with less than 1% factor for them to have bleeding episodes, which is going to take decades to sort of like re-teach, if you will.
Speaker 1:The institutional educational platforms and, while we're working on that, the common treatment protocols cannot delay another 25 years for us when we know that this is an issue, even for when we're just with a little higher, you know, with some factor level production. So so I'm, I'm, I think it's important and I'm I'm constantly an advocate, and I know you've heard me say this a lot, but I'm constantly advocating. I think the patient voice matters in this, because the more that we continue to knock on the door and say, hey, this is a problem, I think it is it takes from a patient point of view, it takes self-education. You've got to put yourself in a boat where you can, at some level, have an educated conversation with treaters who may not have an awareness of this yet, and simultaneously, for those like I, look at you as a leader, as someone who is approaching things extraordinarily differently. I'd love for you to talk a little bit about how, when you have a male person that's severe and that comes into your clinic if I'm not mistaken I believe you've told me this before is that you literally test every woman within a hundred mile radius of that person.
Speaker 1:Right, because you just want to know for sure. And so tell me a little bit about that. This is what is going. I want everybody to know. This is the kind of care of what you're doing in your clinic that's different than what we see in other places, the kind of care of what you're doing in your clinic that's different than what we see in other places. This is the level of of care that's going to be needed to really move the needle, because if other treatment centers and other clinics and other and the other research partners that are going can can see what you're doing with your patient population, I, I think it would vastly, you know, it would improve, even while the education system and we're trying to change that literature issue, right? Is that on track?
Speaker 2:Absolutely, jonathan. You know. A lot of what we do, either as healthcare leaders, in administration and or as physicians, has to do with how we work together with our administrators in the healthcare system. What may be ideal may not be practical.
Speaker 1:While it may be my, you don't like that as a patient, I don't like to hear that Absolutely, but it is reality, right, we live in a world that's driven by a lot of matrix of decisions that we don't all control everything.
Speaker 2:But I think the power is to not like anything in life not to be bogged down. When you get a no at a board meeting, that's good. How do we keep moving forward? How do we keep hammering and hammering, and hammering until it gets molded into what you want it to be, or at least close Persistence, persistence.
Speaker 2:That's right and it works in every aspect of healthcare, whether it's building a program from the administrator's standpoint or the payers who have to pay for it to make sure it's sustainable. You can burn through a million dollars in six months and have nothing to show for it if it is not sustainable. So I think the idea is that to impart a change is great, but to sustain the change is more important and I see value in creating something like that. So a person with severe hemophilia, a walks in gets referred from a dentist or a primary care provider because of excessive bleeding we have had I have had a vision of bleeding we have had. I have had a vision and now it is materializing in our local and hopefully it'll catch on nationally as an Ask Me program Ask Me by an extension. A second aspect of it is Ask Mom program. The Ask Mom program is every boy that walks in. Once they are situated for the hemophilia care, diagnostics, therapeutics and care, take five minutes or 10 minutes out of that visit to ask the mom Do you know that you may have something because of the genetic basis of this disease? Believe it or not? More often than not, about 90% of those conversations through our Ask Mom program. What we are hearing is many a times jaw-dropping those journeys, those stories that these mothers and their siblings, sometimes in the same household, have gone through, what they have been subjected to in terms of social taboos, in terms of access to medical care and subspecialists, especially hematologists, the shunning that they have received from community health resources which are otherwise available for all, is so heartbreaking that, by creating an awareness that this is an issue, an unmet need, I think we are now entering into a stage, a decade, where these underrepresented minorities, I think, will find a voice. They are already finding a voice.
Speaker 2:I have had the great honor to serve as the American Society of Hematology's ambassador for this year. One of the tasks of this 36,000 plus strong organization at least based on the attendees that would have the national meeting this past weekend was to go out and influence change into how we do hematology nationally and globally, and one of the jobs as an ASH ambassador that I've taken very seriously is to start with that change within my healthcare institution. When I say healthcare institution, it's the medical school, it's the school of nursing, it's the school of behavioral health. All the trainees that are coming out should have an opportunity to hear and influence change. So when you talk about, hey, the textbooks are probably going to take 10 years to catch up to what you and I are seeing in the field it does also start with the people who are going to be reading and practicing medicine out in the community. That's right. So a special interest group for hematology trainees has been created at our institution and while I was expecting that through the ambassador by being an ambassador, I may be able to attract five or ten medical students or trainees on campus, nursing students, behavioral students that number has ballooned up to 66 people just this year alone who want to learn more about hematology, want to learn more about hematology and advances in hematology, advances in hematology, providing an opportunity to create 66 more advocates who will hear from me that, while we are talking about hemophilia, please take five minutes in an encounter, if you're in an emergency room or you end up being a dentist, or you end up being a nurse caring for a person in an urgent care or an inpatient way, just to ask, hey, what about you? What about mom? And I think all these baby steps, I think eventually will lead to us for us to move into a space where there is equal representation. Yes, additionally, as the role of a community advocate that your community sees as the face of somebody who takes the conversation seriously. We have, and I think, a great opportunity here to address our multilingual patient population.
Speaker 2:I come from a state where I practice which is a potpourri of cultural mix, whether it's Southeast Asians or Hispanic population or people from the Middle East, each having their own cultural nuances and points that may or may not be very touchy when you discuss. So my background, with having lived in three different continents, lived and worked in the healthcare field in three different continents, lived and worked in the healthcare field in all those places, has taught me one thing if anything else is respect beyond anything else Having completely no judgment, no encounter or perception when having a discussion with a person of a different cultural sensitivity is really the real big door that opens you. I'll give you a story of a family member being referred for severe bleeding, to a point that the hemoglobin had dropped to scaringly low levels in this person, who by default gets referred to the hematologist, walking into the room. Knowing the ethnic background from the Southeast Asia country that this family belonged, I knew at that point that I had to be very careful in talking about bleeding in girls. This is that part of the world where blood is considered sacred. Blood is considered or equated to life. Somebody that loses excess amount of blood is looked down upon because it is equated with less of life. Translated in simple terms due to my cultural journeys globally and my continued engagement in these countries and trying to bring some level of awareness, this is something that I had picked maybe 15 years ago.
Speaker 2:But when faced with this situation and seeing the resistance and even getting to that appointment, walking into that room with everybody sitting cross-legged and not wanting to share, I knew there was a different conversation I needed to have to break through and I'm happy to report three members of that family are on prophylaxis therapy today. Wow, family are on prophylaxis therapy today, from acceptance to getting the tag being put on say hey, you have a bleeding disorder, and going through the stages of grief, which is acceptance, and anxiety and fear, and then denial all those stages in that order and then eventually saying yes, this is something that we will accept, label ourselves with and seek cure for it to better our lives, because we are not in that cultural foundation anymore and we'll go out to our church on Sunday or Saturday and talk about this and become a champion for it. I think it's really how we change behavior, both from the academic level, where new trainees are coming out, and also in the societal level, by showing respect.
Speaker 1:The level of empathy and psychology that it really requires for you to be able to help to know how to maneuver against those, you know, intrinsic biases, if you will, that are that are sort of, you know, create walls for all of us, and it does, you know. I mean we'd all love to. I mean I think there's a lot of people out there, especially people with a large amount of empathy. Naturally, you know, feel like that everybody needs to be just on neutral standing ground. But we, but to recognize that we all have different backgrounds and pasts and we all have different belief systems and cult. But the cultural sense of that, I think, is something that is like an awareness of its own that really doesn't have anything to do with the biology or the science. I think sometimes we can get so focused on the mechanics that we almost miss the environment, focused on the mechanics that we almost miss the environment. But the solution sometimes is connected to having an understanding of the environment so that you can address the mechanics, and I was recently. We just had our Hope Conference recently and there was a person that came that was talking about their religious background that they had contextually grown up in, did not allow them to take blood products ground is that they had, you know, contextually grown up in did not allow them to take blood products and one of the and so they suffered great deal in their early years as a result of having a bleeding disorder and and it was, it was devastating to their physical body and and their life was at risk and all of these things and well, at some point a physician was able to sit down with them and explain to them recombinant factor and that there was no human element in it, and actually unlocked a whole, you know, a whole world of solutions that they didn't even know, you know, were possible, but it took a, it took someone sitting down and trying to understand before they tried to give them the solution. And and I I just think, man, that the fact that you're training 66 other physicians to think that way now and to see the level of change in people's lives as a result of that is really where the rubber meets the road.
Speaker 1:I think it's nice to say that, yeah, we should do that too, but it's not an add-on, it's not a supplement. That attitude and perspective for all of us no matter. I encourage patients all the time. It's like we got to give treaters a break. I mean, you know like you can get mad sometimes that they're not doing it, but they got to see all these people and they're managing all these tensions constantly and there are.
Speaker 1:They're getting pushed back too. I mean, you know, we, we need to give each other grace in every, no matter what seat you're sitting in, no matter where you're at in life, no matter what your background is. But just being able to lower those guardrails down just a little bit to have that conversation is where real change can take place. And it excites me about the future because, exactly right, the literature may take some time to still catch up, but if we can illustrate it in real time and other people can observe that change happening rapidly, where it's not just about slight improvement, it's about complete and total rescue, if you will, of people who are devastated by these things.
Speaker 2:And it's so inspiring to hear you talk about that. You have to see, this is something that you are doing, it at your end. I'm doing in my little nook with my little energy and effort. But organizations, national organizations, whether it's people coming out of the MESA guidelines or American Society of Hematology that has empowered and given platforms for people like us International Society, thrombosis, hemostasis, world Federation of Hemophilia these national organizations have gone beyond just pure academics, have gone beyond and saw the value of creating and influencing culture. I think all kudos to them and colleagues of ours who are at that stage that they can actually bring out influence in the community. I think it's very powerful and I think we're just playing our part into this bigger scene. The second thing I'll say to the fact that what has really happened is a good start, but you know, talking about specific examples of what we do need to go, what, what?
Speaker 2:The mesa act 2.0, the next guideline piece, I think, on the ground, challenging, uh, our effort at getting therapy to patients, are structural barriers, whether it's insurance company denying those medications, whether it's the insurance companies denying those medications, whether it's the insurance companies or pharmaceutical companies not having guidelines or policies to support a prescription or a random or a radical idea that one may have to offer care to women with bleeding disorders or mild and moderate hemophilia patients who are suffering sometimes more because they have never been offered prophy therapy. I think we have a chance at addressing and improving our current state of affairs, current guidelines, in maybe two examples. One would be involving mental health and empowering or creating or mandating in these national guidelines the very powerful need of having, or centers having as an essential item some form of a mental health access to patients, something that gets commonly uh uh and I see it all the time in hemophilia centers that I get to visit not be present in an active role physiotherapy, dentistry, social work absolutely essential for every person with hemophilia. But I think, in the current social times and the polarization we find ourselves in, I think the power to address anxiety, depression and the feeling of feeling left out, specifically upwards of 20 to 25% of people with hemophilia A reporting that these are issues that affect them on a daily basis. Percentages of anxiety disorders, depression disorders, basis percentages of anxiety disorders, depression disorders leading to ineffectiveness or not having enough effectiveness of their prescribed therapy, chronic pain leading to opioid use leading to dependence All of that ties into an opportunity which I think MESAC and all other guidelines have to incorporate in improving centers to get that idea that this is a priority item.
Speaker 2:I would also say leveraging the power of genomics. Many a times when we write those scripts and we get those denials of prior authorizations. One of the things that has really empowered me in the community and then to go out and advocate it globally is to finding the genetic basis of disease. We have gotten really good over the past 10 years in identifying. How do we do whether it's a female who has hemophilia, a carrier status or a von Willebrand disease patient with severe von Willebrand disease status? Not by just relying on conventional factor levels. Right, because they fluctuate. Right, they go up and down.
Speaker 1:It's an X-linked chromosome issue. I mean, at a fundamental issue. If you see that there's a mutation, you have it, yes, and so the factor levels almost can be okay, that's how we're going to address a treatment plan. But that's not really. Do you have it, do you not have it? Which is where the formulary issue on an insurance reimbursement level really becomes a problem. But that's amazing. That's amazing.
Speaker 2:And with hemophilia, yes, whether you have it or not, an X chromosome with von Willebrand disease, it's multifactorial, it's not X-linked, it could be autosomal dominant or autosomal recessive. Suffice it to say we have gotten good at commercializing, or commercial tests have gotten good at becoming accessible to us. Oh, that's so good, not just the hemophilia treatment centers, but non-HTCs that care for hemophilia primary but non-htcs that care for hemophilia primary care offices and physicians.
Speaker 2:So what we are empowering our at least in our community is asking our people a referral base to think about doing genetic testing right. I also have the good fortune of taking care and maybe influencing care in our area for another genetic disorder, which is sickle cell disease, which affects disproportionately the disadvantaged population, african-american and Hispanic population in the United States and globally. By the way, people of color Newborn screening screens people with severe sickle cell disease right off the bat. So a person born with severe sickle cell disease gets a little in the mail at four weeks of life, within four weeks of life, and that's because it can be tested on the blood pad.
Speaker 1:It's easy to do, yeah, it doesn't have to be a centrifuge and the laboratory results can be done on a very heel stick sort of basis. That's one of the things that we found sort of in the rare disease work that I've done on on some of these advisory councils is that you know, unfortunately some of the bleeding disorders, like hemophilia, for an example, can't be cause. It's got, it's a little bit more in depth. They need. They need a volume to be able to test for that.
Speaker 2:But but genomics, yeah, but you Sickle cell disease I mean it's a solubility test, Whether you have it or not is now tied in with genomics. Every person in the United States that gets born with severe sickle cell disease, that gets tested on that little heel prick before the baby that leaves the hospital, has now access through that program and through that sensitization bundled with a gene at least in California for genetic sequencing. So by the time they get to me, within the first month or two months of life, they already have a diagnosis of sickle cell disease and a genetic sequencing done for them and then offered to that to their parents. Because it takes two carriers to make somebody with sickle cell disease. And if you have done that for a condition like sickle cell disease, I don't see why we should not do that for bleeding disorders, A disease like von Willebrand, which is prevalent 1 in 100, sickle cell disease affects 1 in 365 African-American people.
Speaker 2:If we just compare the numbers and not just one ethnic race or subpopulation, every person in the United States one in 100 is incidence of von Willebrand disease. I think we can do population health better.
Speaker 1:Do you think there will ever be a time I mean in our lifetime where we could see that?
Speaker 2:you know, hemophilia von Willebrand could be we have just put it out in the universe today, hoping that this will translate somehow to stick and I can only just hope that uh, getting this messaging out more and more at every platform that we get. If there is a disorder that affects 100 persons in united states and we are not screening that, at birth.
Speaker 2:Yes, maybe we should think about doing that, because it's not just that one person, it's the entire healthcare enterprise, cost-benefit analysis, et cetera. So I think this is a and again to that point. I think diagnostics and testing, conventional reliance on just factor levels, may not be enough. So the future guidelines should include genomics or genomic confirmation somehow in both empowering physicians to write those scripts and not be denied, and also for patients to have a closure in knowing the genetic spaces of their disease and knowing what is the root cause of their problem. I think it's valuable any which way you look at it.
Speaker 1:I love that. There's so much more to be done. I want to touch on two things, maybe quickly. I know our time is maybe coming to a close here, but iron deficiency always seems to be something that is sort of a mystery, but yet still we're discovering how that plays a diff. There's so many things that iron efficiency plays a role in. Is that something that you see becoming somewhat of a leading indicator to realizing that anemia could be a leading, I mean, could at least be an indication that more investigation needs to be done for a female especially, or maybe someone that's even mild as a male, but someone that is? Do you see iron deficiency becoming more of a qualitative investigatory element?
Speaker 2:Yeah, I think and I would actually go one step further, and this is something right off my slide deck that I give to my medical students and trainees is iron deficiency without anemia. Iron deficiency without anemia long before iron deficiency surfaces itself to become anemia a problem that has already caused symptoms in people. Iron deficiency without anemia is where we need to strike and there are easy ways. A simple cbc, simple blood count, can give you the links to it For any well-trained hematologist, somebody who's done enough work in hematology. Looking at just a simple, complete blood count, you can make an ascertainment to some level of certainty that which direction this person may be going may be going. They may not have the official cutoff of hemoglobin drop below 11.5, which is when they get diagnosed with anemia and then get a referral to a hematologist or a script for iron. Just seeing the other metrics that are right there in that report and identifying people with iron deficiency without anemia I think is a lower hanging fruit for our people with bling disorders.
Speaker 1:Very interesting. Is that something that you feel like is? Does it? Oh well, let me ask it this way Do you feel like you have to have two CBC reports to be able to see where the changes are occurring, or is that something that you can detect just from a single draw?
Speaker 2:I think starting out with most people as part of their annual health workup, get a single CBC, yeah.
Speaker 1:You would need to see the record to detect it to some degree and as an early indicator.
Speaker 2:As an early indicator. Absolutely, when it does become iron deficiency anemia, when the hemoglobin is actually dropped and has basis of iron deficiency as its root cause. Yes, absolutely, we should be investigating right there.
Speaker 1:And be treated right away.
Speaker 2:That could be done earlier if we saw iron deficiency, even Because there is plenty of data that shows that more than six months of iron deficiency or empty iron stores by the time somebody becomes goes from non-anemia to anemia state. You've lost enough iron in your brain that it permanently affects your cognition and IQ points. There is an actual quantification available, both in mice studies and human studies, that show the duration of iron deficiency directly proportional to the sometimes irreversible outcome in cognition. What Absolutely? And iron deficiency? I can talk three more hours about it, but I think the point is it's the global under-recognized disease burden. You know, those times when people come and refer, I just feel lethargic, I don't want to focus and I sleep off or I can't sleep properly. All of those, many of those, have underpinnings in subclinical iron deficiency. Now you have iron deficiency anemia. You automatically get a referral, but idea is to get to the point where those people with bleeding disorders, whether it's hereditary telangiectasias, hht or von Willebrand disease, these prevalent disorders in our community that lead to blood loss.
Speaker 1:Right.
Speaker 2:Two, three years before they get to the iron deficiency stage. If that is the point where we act by giving a six-month iron supplementation or just advising to do an iron-rich diet, that can actually change the course of how a teen would perform in high school and off to college and have a career unbelievable.
Speaker 1:Uh and it's, it's, it's all scientific basis of disease and so often those are being kind of sort of those types of symptoms removed into oh there's probably adhd, add something like that, let's go absolutely 100 other type of you know uh sort of mental simulation that they're giving them some chemical to do. But really and truly it could be just a root cause of this, this iron thing. I, I, you know, I I fought really hard in school to get a good c average, uh, green, and so now I'm starting to wonder is it possible that maybe I was actually just low in iron? I'm going to go back and talk to some of my teachers and say it wasn't my fault, I was low in iron, I was bleeding, you know, internally.
Speaker 2:Get your grades improved, get your diploma checked.
Speaker 1:You know they grade on a curve.
Speaker 2:Maybe they could go back and revise some of my grades and that's another thing you, you know you're absolutely right and and yeah, you'll get an honorary doctorate for that. But going out to schools and going out to to to high schools and middle schools, I do this thing called as coffee with the principal. Oh, I love, just out of my own volition, and I think it's very powerful that when you go out to the community and talk to principals, specifically teachers and health counselors in those offices that are sitting and seeing I don't know little Tommy coming into after PE with a nosebleed that lasted more than 10 minutes Right, that happened when he was just sitting and doing his homework, versus jumping off of a swing in the. That may be abnormal. They may need a letter to be sent to the home. Say, hey, I think your son may need further testing as just a point of sensitization.
Speaker 1:So this is bringing to mind something that we've talked about sort of through the years of different things, about public awareness, because I feel like there's an element to this that is not just about I mean, I think that there's a lot of time and energy for those of us who are deeply affected by these things that we've started to see. I mean, again, when my two daughters were born, at the time the common knowledge was, yeah, they, probably they might. We want to investigate when they have their cycle or they get pregnant or something like that. But the carriers for sure, but we don't really. But we observed symptoms when they were four and five years old and asked questions, but again, the predominant.
Speaker 1:So I think that there is this sort of effort of now where people who are deeply affected by bleeding disorders are going and saying we've got to change the hematologist at the highest level of mindset, we've got to get rid of this language in the old literature. That's important and we've talked about that. But it also brings to mind the work we could be doing with educating maybe an OBGYN clinic or principals at a school. I'm thinking now, having this conversation, you and I need to go and buy a billboard in every city and we're just going to put your picture and my picture we're saying on your deficiency, call me.
Speaker 1:I mean I don't know, maybe there's some sort of like thing we can do, but I just it makes me, it makes me thoughtful of the idea that in some ways, working in rare disease, we can get so sort of we can work in silos and we can get so almost, almost tunnel vision, if you on just trying to help improve the things that we know we should improve in our spheres. But truly, maybe this is an issue we should be advocating for in every sphere, because there's probably far more people out there. I mean, I look at the CDC numbers We've talked about this before. Is it 3 million or so that are estimated to have von Willebrand's disease? But they only know where like 30 000 of them are. I mean it's some super and and the divergence between that huge of a number to the actual people that are being surveilled is so broad that you gotta know that maybe if we just inform the whole world differently, maybe we would find a lot more people who are suffering silently that there is a solution to help improve their lives.
Speaker 2:A simple thing like iron deficiency. Yeah, you know I work closely with the countries that I had the good fortune of spending enough time with A simple intervention like supplementation of. So the country like India, for example. Some of the work that we have done in India around anemia just anemia, because by default a hematologist an example that was really powerful, that changed things for good was identifying how can we do rationing better. Now the word rationing is very different when it goes to Southeast Asia context. So most people who are below poverty line or near the poverty line gets a total amount of fixed amount of food that the government gives them on a monthly basis. That's called ration.
Speaker 2:How are advocacy allowed to identify one from a small regional pilot to say, hey, there's 80% of young ladies in high school that have iron deficiency in this entire region. And when I say small, entire region in India, there we're talking about 1.3 billion people divided into a small region, that's we're talking about 30 to 40 million people. Prevalence of 80% of iron deficiency in every school-going high school girl was the wake-up call that led to a policy change where iron was added to the wheat flour. So supplementation what? Yes, a simple example like that how science ties into public health and how that ties into hematology and how that makes common sense, things that can revolutionize a small population.
Speaker 1:And iron supplements are not that expensive. I mean they've been relatively, I mean very inexpensive.
Speaker 2:Iron has been around for centuries, right, if not thousands of years, where people have identified that. You know, I am a lifelong vegetarian. I practice in a town that is has the has been, has been glorified as the blue zone, the only seven places on planet earth where people live longer because of a vegetarianism based and active based a blue zone where I live in. So when people come and expect that iron means meat, not really. There are non-meat sources. There are plenty of sources around the world in our common sense diet that can ameliorate that problem from even happening.
Speaker 2:When you take it up the notch and say, how do I apply this to people with bleeding disorders, especially women who are carriers and one-world brand patients, people with bleeding disorders, especially women who are carriers and one-world brand patients, there are common sense measures which, if done diligently on a daily basis, can actually get these people to a much higher efficiency. And this is something that is low-hanging fruit. You don't need to change the paradigm, but that's something that needs to go in the policies and the guidelines, something that has to have the next level. I personally feel every person with a bleeding disorder should get an iron prescription hand-in-hand at the same time when they get their factor prescriptions or at least be screened for iron deficiency, because that is happening, whether you like it or not.
Speaker 1:Well, I think there's some of these things that are changing, even with vitamins. I've noticed, even in my own treatment center visits, that every year they're coming in and saying well, we understand that vitamin d plays a role in assimilation of of calcium in the bones of soon city, so we need to make sure we check your vitamin d levels. I mean, I'm having to supplement that now. I'm getting older, now I have to do everything. You know my heart disease, all this stuff you know.
Speaker 2:But but but the boston, california, more first time sunbathing, you'll get someone, one of those blue zones.
Speaker 1:Yeah, this is in and and you know we live in louisiana. So louisiana is, like you know, uh, cardiac arrest neighborhood for everyone because we, we eat so poorly here. But I always say it's hard to be skinny in louisiana because their food is so dang good, you know. But uh, but you know I can't have anything fried anymore. I can't have. You know it's terrible. But the bottom line is is that these, sometimes just these simple measures could be not only a way to provide solutions, but also things that we can actually help find even more people that are again suffering silently. I think you know one of my biggest ambitions in life is to reduce unnecessary suffering in humanity. If I could do that across the board, in people out there that are suffering unnecessarily, when we have tools right here in our back pocket that we could do in such simple terms and it takes innovators like you to be able to really speak to the science I'm just connecting the dots.
Speaker 2:They've always been there. Dear physician, jonathan, I don't have your access to your full disclosure, to your healthcare records and I'm not giving healthcare advice. But many people with hemophilia have been disadvantaged by getting that label of bleeding disorder and have been pushed into the corner of physical inactivity. Whether you have especially mild and moderate hemophiliacs who have that diagnosis of disability, which is which is what they've been told is the reason they can't participate in PE or can act, be active because of the risk of bleeding, can go on the swings, etc. Yet at the same time, those mild and moderate hemophiliacs don't get access to prophylaxis therapy.
Speaker 2:Well, that's changing Common sense measures, like thinking about how we impact in what we already have and we are doing, of addressing these issues with those symptomatic women who with hemophilia A mild and moderates, and having them access to factor therapy. We have terrific new factor therapies and non-factor based treatments to stop bleeding. Maybe mild and moderate patients don't need all that factor, maybe they don't need all that therapy with all that maximum dose. But improving quality of life with common sense measures, if you already have, by thinking smartly and, I think, repurposing what we have, I think can be the game changer for majority for bleeding disorder patients who are currently in the databases but are not maybe getting access to a factor on a daily basis. So good, so good.
Speaker 1:I want to touch on one more aspect that I think is important, especially for women with bleeding disorders, that is, maybe they didn't start out from birth getting prophylactic treatment. I mean, I hope we see a day where maybe preventative treatment is a standard of care for even for mild, moderate and so on. Um, but, but you know, pregnancy brings up a layer of complications that I don't think everyone is really up to speed on, and you've done a lot of work to support people throughout pregnancy. That, I think, is just phenomenal. I'm just really amazed by that. Can you speak to that a little bit about what you've seen occur and how you can improve maybe the process just by monitoring and being aware of bleeding disorder in the pregnancy process and being aware of bleeding disorder in the pregnancy process?
Speaker 2:You know, this is such an important discussion to be had both locally and nationally and I think, internationally is when women with hemophilia or women with blood disorders, or this one, willebrand and or otherwise, go through the needs of their obstetric care. One of the very important aspects is how do we find bundle care and that's something that I've pushed for and I think is going to be and should be in all the guidelines to find an opportunity to, if not mandate, at least recommend strongly to have a bundle care community program. I love that.
Speaker 2:It doesn't have to be a hard shot obstetrician, a high risk OB, to be part for you to become a partner. It could be a midwife, it could be a doula, it could be somebody who you can delegate to when it comes to continuity of care, so that you can find a partner in tandem to work with to have that perfect pregnancy outcome. As is, women with bleeding disorders suffer through severe postpartum hemorrhage. About a quarter of pregnancies with hemophilia A women with hemophilia A, specifically symptomatic hemophilia A, have severe complications from postpartum hemorrhage and from cesarean sections and excessive bleeding from that. And not many women get access to a factor, despite many times them shouting in the first visit with their OB saying I have hemophilia. So instead of going backward and saying, hey, we need to educate more OBGYN, I think we need to find, in whichever space we are and I think this is more of a structural comment that I'm making to find a bundle care program or bundle care for a community.
Speaker 1:A wraparound, holistic approach.
Speaker 2:Absolutely, and, I think, with inclusion of important stakeholders that will be present when the time comes. Constant monitoring of factor levels during pregnancy, because of the severe physiologic fluctuations that estrogen and progesterone in pregnancy brings about, I think, is the second important point for any hematologist, even if they're not career hemophilia doctors. I think caring for somebody through pregnancy is a very nuanced field, um, and I think, if nothing, getting a couple of doses of prophylactic factors, prophylactic iv factors, in their households for those emergencies when the water breaks or from early, early labor sets in or when unplanned cesarean section happens, can be the difference between life and death, both for the mom and for the baby, because I think pregnancy outcomes directly correlate with the experience of childbirth. I've had women who've come into our hemophilia a clinic, or hemophilia clinic or bleeding disorder clinic, having to come to get clearance for hysterectomies as the reason for their visit. Upon probing further, it is pretty evident that they have lost hope because of a negative experience that they've had that they only see the only way to move forward is to get rid of an opportunity to have for the children, and I think that's extreme, but it happens all around us and I think that is something that is easily fixable.
Speaker 2:So to speak to your point about how do we do this better systemically, I think bundling care even if it's not the top level experts, but at least people who are inclined, who identify hemophilia needs to be monitored. One-world-brand disease needs to be monitored throughout pregnancy. Just like prenatal visits happen, hemophilia visits should happen. And, additionally, as clinicians, monitoring the right levels and making sure the patients have access to factor during that nine-month period when anything can happen, I think are two things that have really revolutionized at least my region, where a person with hemophilia or a woman with hemophilia or one of the other diseases absolutely top of the list on the list when it comes to high-risk pregnancy. A consideration for high-risk pregnancies, I love that.
Speaker 1:I love how much priority you give to that too, because I think so often it doesn't raise the alarm, it doesn't register, even within the specialist world. Sometimes it doesn't always seem to be the highest priority, and I don't think I really don't, you know, blame anyone for that, I just. I just do think, though, that it's important that the, as we learn more, we need to apply our learnings, and our learnings are that there are. You know, I, I will, I probably will never forget a moment that I had with one of the leading treatment centers in the country.
Speaker 1:I had the head nurse care coordinator tell me one time and this is probably 20 years ago now. She came to me and she was just starting. She had just starting to realize that there were so many people, thousands and thousands of women in her region that were having hysterectomies unnecessarily. All they needed was just a little bit of factor or a little bit of care from a hematologist and they could have had an outlook of having a full. I mean, these are women that wanted family, they wanted to have their own children, and they were forced into having that, recommendation being the only option, just not knowing. It was a lack of information at the time. But this particular nurse care coordinator was devastated when she learned that there was thousands of these occurrences happening in her own region, that all they needed was just a little bit of information, that they could have gotten a little bit of care in their monthly cycle or in their I mean teenagers, you know, young people, you know this was happening all over the broad spectrum, and so the devastation that she felt in that moment was the first time that I had ever even heard, and I think I had maybe a couple of kids at the time.
Speaker 1:One I know, my daughter, was born at the time. She was just born, and it was like I'm thinking, oh my gosh, like I don't like. Like you know, at that point it was just to watch the devastation on her face. I don't ever want to see, you know, that happen. I don't want to hear that again. Like I mean again, everybody has their own decisions to make, and I'm not talking about people that are in extreme circumstances. I'm just talking about people that you know their desire is to have a family. They should not be prohibited from that opportunity just because you know we have a lack of education, you know, and so you know bringing the whole community up to speed, bringing people up to speed, and sometimes that's unavoidable because they didn't know they had a history of a bleeding disorder in their family, so there would be no information to begin with.
Speaker 1:But if you have information at some point, like being able to get monitored and get checked out as a person that is wanting to plan a family or somebody, and that could start at a very early age it doesn't have to be when they're 25 or just married or whatever. It could be that they're looking at 15, 16, 17, 18 years old, and one of the reasons one of the initiatives that we've taken as an, as a organization, was this is such a priority to us. We actually have just in the last I guess he's been on our board of directors now for the last three years as an OBGYN who we just recently did a podcast interview with Dr Biven von Allman and his. He's very passionate about trying to help OBGYNs really have a revelation of understanding because he himself in his practice was doing surgical emergency operations and oftentimes he discovered von Willebrand's disease in his practice in the middle of surgical procedures. Sometimes Absolutely.
Speaker 1:Getting results back Happens all the time and he was devastated to find out that there was just a little bit of treatment that could have been applied and they could have avoided the whole emergency. Absolutely Happens all the time. So I'm excited about you know, as we learn, we need to apply, and that goes across the board for us as a patient, for a provider, for the industry, for the community, for the larger things at work here. But you know, I'm so inspired by what the work that you're doing, and I'm so inspired by your passion and your heart for people and your dedication. You have more energy than I do and your dedication Um I, I you, you have more energy than I do, and and, and and, so motivated, and every time I call you, you're in the middle of like transitioning walking out of me.
Speaker 1:It's amazing. I'm like I don't. You're like the energizer bunny you never stop and um, and I'm so motivated, though, by your passion to to continue to change every environment, from the provider side to the formulary side, to the system. All of us, I think, know that the system has problems and it's a matrix of problems, but it starts with people who care, and it starts with people who are intentional, and it starts with people with passion who are motivated to make change, to reduce unnecessary suffering, and so thank you for all of the work that you're doing.
Speaker 1:I know that there's probably thousands of patients that haven't had the opportunity to thank you already, but there's many who are listening to this episode right now and thinking man, I just wish I had an opportunity to have access to this, but I know for a fact we heard today that there's 66 doctors that are learning from you right now, that are going to go out into the world, and I believe that there'll be probably hundreds more before you're done, and so maybe thousands. You're changing things not only in the US. You're changing things internationally. We didn't get a chance to talk about all of the work you're doing globally, but I truly believe you will be one of the leading voices for change in the bleeding disorders community globally for many years to come, and I'm just thankful to call you a friend. I'm thankful for your time with us today and thank you so much for the important work that you're doing for people every single day. It matters to the infinite degree and we're so grateful. So thank you so much.
Speaker 2:Thank you for having me, jonathan, and giving a platform to share with your membership and people watching about how much more we have to do.
Speaker 2:And also, as I said before, it's perfectly fine to be imperfect, because once we expect and accept that imperfections are human, I think that's really where we start making men's, and I believe that personally and I think it applies globally. And what you are doing, what Hope is doing, is equally, if not more, important than what I do every day in a clinic, because you are going out to an audience which is much larger than I may have, always, at any time, may have access to it and given Peter time, and I think that change that can bring about by empowering people to self-advocate I think is just so powerful because it makes my and colleagues like me who are practicing around the world. It's very easy when people come with already energy and strength and have already probably gotten over the sadness and the stigma of not knowing that they can talk about this openly. So thank you for having me and here's to many more to come.
Speaker 1:I love it. Well, thank you so much for listening to this podcast and for everyone taking a minute just to download this. If you would just leave a comment or give us a reply. Also, if you have any questions for Dr Jane or anything we talked about today, you can always email us at info at hope-charitiesorg.
Speaker 1:As an organization dedicated to patient advocacy for people with bleeding disorders, we are so passionate about making certain that we address the real needs of real people with honest and open and vulnerable conversations as much as we can. So thank you for the investment that you've provided by listening to this. It helps us be able to do more of it. We also want to say a big thank you to our episode sponsor in the series of this Women's for Living with Bleeding Disorders series, genentech. We're so grateful for their support for allowing us to provide more educational opportunities and content like this. Thanks so much for listening, and please share this with one of your friends or family members, maybe somebody that you're trying to help educate and learn about within your family that may need to know more information about what you're experiencing every day. This is a great conversation to start a deeper conversation of understanding for all of us. So thanks so much for listening and joining us today. We look forward to seeing you in the next one. Take care.
