Podcast - "We Can Do Hard Things: Educate, Advocate & Inspire"
In honor of National Sickle Cell Awareness Month, Holland & Knight's Public Policy & Regulation Group is proud to partner with the Black Women's Health Imperative for a four-part podcast series on sickle cell disease. Sickle cell disease is a genetic disease that causes red blood cells, which are normally round, to become C-shaped like a sickle. It is a progressive and debilitating disease that can cause pain crises, organ damage and a shortened lifespan, and it disproportionately impacts communities of color, occurring in approximately one in every 365 Black or African American individuals in the United States.
This episode is co-hosted by Holland & Knight Senior Policy Advisor Shawna Watley, Chief Policy Officer & Senior Counsel for Black Women’s Health Imperative Tammy Boyd and Senior Director for Alliance Development and Government Affairs at bluebird bio Sonya Elling. They are joined by two sickle cell warriors: Teonna Woolford, CEO of Sickle Cell Reproductive Health Education Directive (SC RED) and Phillip Okwo, an accomplished business and finance professional, sickle cell advocate and Vice Chair of SC RED's founding board. This discussion explores the journeys of both Ms. Woolford and Mr. Okwo as individuals living with sickle cell disease and how they applied their lived experiences to advocacy work in the community. They emphasize healthcare inequities facing the sickle cell community, particularly in regards to reproductive health. During this episode, the group explores current legislation and possible new policy efforts to combat these inequities and improve the overall quality of life for sickle cell warriors. They also highlight how education can play a role in advancing the quality of care for those living with sickle cell.
- Listen to Part 1: "Chirping" on Sickle Cell »
- Listen to Part 3: Talking Sickle Cell Trait with NFL Wide Receiver Ty Montgomery and Dr. Anjulika Chawla, MD, FAAP »
- Listen to Part 4A: Discussing the Mission of Black Women's Health Imperative with CEO Linda Goler Blount »
- Listen to Part 4B: Discussing Sickle Cell Research and Care with Dr. James Taylor VI, MD »
Shawna Watley: Hello, thank you for joining our podcast today. I'm Shawna Watley, I'm a Senior Policy Advisor with Holland & Knight Law Firm. Today, in partnership with the Black Women's Health Imperative and Bluebird Bio, we welcome you to our second podcast and a four-part series on sickle cell disease. I am so excited to introduce you to Tammy Boyd, who is the chief policy officer and senior counsel for Black Women's Health Imperative. She leads the strategic policy and government affairs direction for the organization, as well as our other co-host Sonya Elling. Sonya serves as senior director for Alliance Development and government affairs at Bluebird Bio, and in this capacity, she works with community leaders and policymakers to advance Bluebird's commitment to enable the development and delivery of the advanced therapies that can transform the lives of those living with severe genetic disease and cancer. Our guests today are two amazing young people who are doing extraordinary work in the field. Our first guest will be Teonna Woolford, who is the CEO of Sickle Cell Reproductive Education Directive. She has conceptualized this organization, which is a 501 (c)(3), and is trying to defeat fertility struggles for other women who are dealing with sickle cell. She is heading up research and seeking resources for fertility preservation. She found very little information about this issue and decided to start her own organization. We also have today Phil Okwo, an accomplished business finance professional and sickle cell advocate who travels around the country being a warrior and an advocate on behalf of those, so they can have a voice. He is a proud Morehouse graduate, and he is the proud father of two children who have sickle cell trait. And so without further ado, we will begin this discussion. Thank you again, Sonya and Tammy, for co-hosting this important series today.
Tammy Boyd: Thank you for inviting us, glad to be here.
Sonya Elling: Thank you also. I'm thrilled to be here again and talking about an important topic.
Introducing Teonna Woolford: Her Sickle Cell Disease Journey and Path to Advocacy
Shawna Watley: So, Teonna, thanks so much for being here with us today. We're so excited to have you. So I would just like to ask, before we dive into all the amazing work you've been doing for sickle cell advocacy, most recently as the CEO of Sickle Cell Reproductive Health Education Directive, could you share with all of us a little bit about yourself and your sickle cell disease journey?
Teonna Woolford: Sure. Thank you so much for having me. I'm honored to be a part of this conversation. So kind of starting from the beginning, I was diagnosed pretty much at birth with sickle cell genotype SS, and it was so interesting it was almost like ordained, because my mother took a very early interest in sickle cell disease. She did a huge fifth grade research project on it, and she was in nursing school, did her dissertation on sickle cell. But, the diagnosis still came as a shock to her because my father's swore up and down that he did not have sickle cell trait. So growing up, I really didn't deal with a lot of sickle cell pain crisis. I had a lot of infections and pulmonary issues. And then kind of when I hit puberty, that's when things really took a turn and started spiraling out of control. And by the time I graduated high school, I just felt so defeated. I had missed like 80 percent of my senior year of high school and I went to a predominately white school. They didn't know anything about sickle cell. They were not accommodating of me at all. And I just felt so defeated. So I ended up having a bone marrow transplant 11 years ago, and I rejected. And really my experience and my front row seat to the disparities of how oncology patients are treated because I was seen on an oncology floor when I had my bone marrow transplant and the treatment was like VIP, it was world class treatment and it was just night and day to how sickle cell patients are treated. And that's really how I started advocacy.
Shawna Watley: Wow, that's an incredible story. I know Sonya has worked with you in the past and is really familiar with your story. Sonya, I would love to hear how you became aware of the work that Teonna is doing.
Sonya Elling: Sure. It's a pleasure seeing and talking to you all today, but I think I've said before Teonna is a rock star, she seems to be everywhere. When you look at her bio and all that she does and her passion and her engagement in the community. And so that is how I became familiar with her is through my work at bluebird bio and our work in the space and the community of people with sickle cell. But I do want to share that the first time I had the privilege of meeting her, and I think as we all know there and this COVID time, we don't really meet each other. We see each other on Zoom or Teams. But the first time I had an interaction with her, she had graciously agreed to speak to Bluebird Bio, all employees, and we do this as an educational opportunity so that everybody across the company can learn and better understand the people we're trying to help and research new technologies for. And Teonna was experiencing a pain crisis, was physically in the hospital in excruciating pain. And not only did she insist on continuing to participate, we could have rescheduled, canceled, she wanted to continue to show up and be present for that meeting, share her story and was so vulnerable and being in that moment and experiencing that type of pain that I don't think I have any capacity to begin to understand and the strength mentally and physically for her to do what she did that day, I think, is probably evident from all the work that she does. And so one thing I would kind of love to know is where you find that energy and how you keep going and doing the hard things that you need to do as a truly a rock star ambassador in the community and where you find that inner strength.
Teonna Woolford: Well, first of all, thank you for the compliment. I want to take everything you said and add it in my bio. But, you know, I think that I just run off of passion. I just genuinely love what I do, and I've always been the type of person who is inspired by challenges. And the sickle cell community, we face so many challenges. There's so much stigma and inequity, and I just feel so passionate about trying to be a solution. So that's what it is. I run off of passion, and I remember being so disappointed when I was in the hospital that day and I was trying to figure out like, maybe I'll put a virtual background, so they don't know that I'm here. But, I decided to just be transparent and raw about the fact that I was there because I wanted you guys to see kind of the realities of what sickle cell warriors go through. The night before I was totally fine and then I was in this excruciating pain, but it was really an incredible opportunity to be able to kind of experience that vulnerability with the team and how you guys embraced me. It was like really rewarding to be a part of.
There's so much stigma and inequity, and I just feel so passionate about trying to be a solution.
Sonya Elling: It was amazing, and I have to say that word raw is so spot on because again, just being transparent and trying to be as transparent as you are. There were some people that said, "Oh my goodness, that made me uncomfortable." But I think that you need to make people uncomfortable, to see change and to make change and help people better understand and get out of their comfort zone. So anyways, I'll get off my soapbox. But I thought raw was 100 percent, I thought that was pretty amazing and that you're amazing to have been so vulnerable like that.
Teonna Woolford: Thank you.
Introducing Phillip Okwo: His Sickle Cell Disease Journey and Path to Advocacy
Shawna Watley: Yeah, that is pretty incredible. Thank you for your incredible strength and courage to be able to say This is who I am. This is where I am, and I'm going to continue to be an advocate even now, while, I'm not feeling so well. So we really appreciate that, I'm excited to just hear all that you're doing. And we also have another guest today, Phil, who I am excited to introduce. And you know, you are another phenomenal and passionate advocate for the sickle cell community who manages to keep pushing for change and increase understanding of sickle cell disease, despite all that you manage in your own personal life. You're now located in Atlanta, Georgia, moving forward in your career, but you're still being an advocate. So we'd love to start by tossing the same question to you that we asked Teonna, Can you share a bit with us about yourself and your personal sickle cell journey?
Phillip Okwo: Thank you for having me, Shawna. I appreciate the question and you know, my journey is sort of similar. I was diagnosed at birth or roughly around six months of age. I was born in the UK and my dad, was actually he was a doctor. He was doing his residency, an OB/GYN at the time. And so there was some awareness of sickle cell, but I was born in the 80s, early 80s, and so there wasn't as much fluency around, you know, kind of the genetic counseling and things like that. So my journey with sickle cell began there. It started with a crisis at about six months of age that required me to be hospitalized and necessitated a transfusion. And then there was kind of a calm thereafter, you know, because my dad was a medical professional. He was very diligent in making sure he and my mom were both very diligent and, you know, ensuring that I, you know, had the care I needed and exposure to the hematologist and the physicians. And somehow we moved from the UK to the states when I was about five years old and at about the age of six, I got involved with the Sickle Cell Disease Foundation of California and I got to attend their camp, which now that I look back on it now, you know, for me to be able to attend that the first year as a six year old was pretty impressive and kind of remarkable for my folks to be able to, you know, to feel secure enough to do that. But it was something that I didn't necessarily really appreciate how much I needed, but that camp experience is something that kind of evolved through childhood and instilled in me a lot of education and self-efficacy about how to live a full life with some accommodation in order to be able to do all the things that people do normally, like camp, and swim, and horseback ride and the like.
And so my advocacy journey kind of started from my aging out of camp and not really wanting to leave and coming back as a counselor. And then as I moved away to college and went through my own transition journey, there were opportunities to kind of come back and to mentor other young adults who were going through this journey of transitioning into adult care. And that is still, to this day, a very volatile time for those of us warriors with sickle cell and transitioning to adult care because much of the expertise unfortunately continues to remain on the pediatric level. So mortality, morbidities all those things really increase, particularly between the ages of 18 and 25. And so as I started to see some of the peers that I grew up with and went to camp with, you know, start to encounter a lot of challenges and some of them ultimately losing their lives. A cousin of mine, who lived in Nigeria, where my family's from, that really kind of inspired in me a real just passion about, you know, maybe out of a sense of survivor's guilt, perhaps, but just wanting to do all that I could to ensure that other young warriors didn't necessarily have the same difficulties that me and some of my peers were having. And I think, if not for the grace of God, I could have easily been one of those statistics, right? And so it's one by one, you know, one meeting at a time one encounter at a time, just slowly showing up to tell your story and to radically kind of destigmatize the entire experience. And so I think that is also very much been a characteristic of the advocacy journey which is becoming more and more comfortable with telling that story. And slowly but surely kind of removing the fig leaves one by one and just letting people know that you live with this condition and that, you know, it does impact how you move. But it doesn't necessarily have to limit you. So I'll leave it there. Probably. I'm sure you got other questions. I don't want to filibuster you.
It's one by one, you know, one meeting at a time one encounter at a time, just slowly showing up to tell your story and to radically kind of destigmatize the entire experience.
Coining the term "Sickle Cell Warrior"
Shawna Watley: Oh no, it's amazing. One of the things that I really heard you say a few times was the word warrior and you describing you all who are in this battle. And it's interesting, is that a word that you use or is that a part of the vocabulary of you all who are suffering with sickle cell or living with sickle cell?
Phillip Okwo: That's a great question. I think it's now at this point. Would you say, Teonna? It's kind of the entire community. We're kind of all settled on this term, and I think it used to be prior to, you know, a little bit more conscientious concern regarding HIPAA and things like that. We used to be referred to as "sicklers," which, you know, some people view as problematic, others less so. But yeah, increasingly, we settled on the term warriors to both, you know, bond us to each other, but also to really kind of sum up the experience of what it is to live with a condition that is at once so painful, but it also simultaneously quite invisible. And that often lends itself to our being scrutinized when we show up in clinical settings for care rather than being helped the way we need to be.
We settled on the term warriors to both, you know, bond us to each other, but also to really kind of sum up the experience of what it is to live with a condition that is at once so painful, but it also simultaneously quite invisible.
Teonna Woolford: And I think that it also came from not only do we identify as warriors because of, like you said, the daily kind of battle that we go through, like fighting against stigma, fatigue, chronic pain, all of that. But I think we just didn't want to be identified as patients because it wasn't, it just didn't honor our whole lives. So that's kind of where that came from. And I remember there was actually a member in this community who started kind of coining that term, and we all just attached ourselves to it.
Shawna Watley: That's amazing. I want you to turn it over to my fellow co-host Tammy Boyd. I believe she has a few questions and would like to engage in the conversation at this point. So I'm going to turn it over to Tammy.
Reproductive Health Injustice and the Mission of SC RED
Tammy Boyd: Yeah, absolutely. Thank you, Shawna. I think both of you brought up great points, you know, as sickle cell warriors and, you know, I guess to start for you Teonna a question would be: you know, one of the things we do at Black Women's Health Imperative is we try to really talk about the lived experiences of black women. And so when we talked before I thought it was just so amazing, you know, could you talk a little bit about your organization? Because as you talk about sickle cell warriors, there's also the part about reproductive, you know, being, you know, as black woman and what that is like. So, you know, could you talk about that a little bit just in terms of your organization and your focus? And that's really the lived experience of the whole person of the sickle cell warrior?
Teonna Woolford: Yeah, absolutely. And that's why I am excited. I think that our missions are so aligned because there really has been in the sickle cell community. Phil and I talked about this all the time. There's been so much priority on survival and just keeping us alive because for so long individuals with sickle cell disease, they were not living well into adulthood. But, you know, thanks to medicine and the grace of God, we've come such a long way and so we, as a community, and as this organization kind of want to raise the bar and set a new standard that it's no longer enough to just survive; we want to have the best quality of life possible and my team at SC RED, we believe in order to have that quality of life our reproductive health experiences have to be considered.
We, as a community, and as this organization [SC RED] kind of want to raise the bar and set a new standard that it's no longer enough to just survive; we want to have the best quality of life possible.
And I think that the timing is amazing just with everything with the black maternal health crisis, and I know that there's a history of women, particularly black women, having to fight for autonomy of their own bodies, and unfortunately you see that happening in real time. And I've experienced it myself, like right before my bone marrow transplant, I expressed not wanting to do it because I wanted a lot of children and I didn't want to be infertile. And it was this young white doctor who looked at me and really dismissed that. And it came down to, 'Well, don't even worry about your fertility or having children, let's just keep you alive.' And what I'm seeing is that, that experience is not unique to me. We have doctors telling women with sickle cell that they can't have children, which is not true. We have them saying things like, 'Why do you even want to have these conversations when you're too sick or too poor anyway?' And so the mission of SC RED is really broad, and it comes down to social and reproductive health injustice. Because when you look at the oncology community, there are so many grants that offer fertility preservation, particularly if you're going through chemo. But in the sickle cell community, we don't have the same access to that. So it really does come down to inequity and disparities.
When you look at the oncology community, there are so many grants that offer fertility preservation, particularly if you're going through chemo. But in the sickle cell community, we don't have the same access to that. So it really does come down to inequity and disparities.
More Than Just Survival, Warriors Deserve to Thrive
Tammy Boyd: Absolutely. And to even follow up with you, Phil, you know, what are some of your, do you see some of the same, I mean, for men do you see some of the same barriers or challenges, maybe not for you, but even for some of your peers as well?
Phillip Okwo: Yeah, definitely. I think you know so much of the discussion, as Teonna alluded to earlier, has been just about the idea that we should kind of just be lucky to even survive, right? And there is this prognosis that again, for someone like myself, born in the 80s, you know, wasn't expected to live through adolescence, much less adulthood. And so that being the case, you know, the whole prospect of being able to father children and enjoy that experience of having a family and doing all that, those weren't things that I necessarily grew up with the expectation of doing. And so I do have two young children now, and my son is six and my daughter's three. But I recognize that to be a luxury, unfortunately for many warriors around the world, because so much of the care, the presumptions around the care is that we won't make it to this level. And so what I really, really appreciated in collaborating with Teonna, with this organization is that it forces healthcare providers and, you know, the key opinion leaders in this space to really stand up and take note and to begin to rethink what it is about, what it is that we're capable of achieving in terms of our quality of life, what are the things that we should be looking for and kind of beyond? And that it's much more about just surviving more than that, it's now a matter of how do we thrive and I think our reproductive health is very much at the center of that because when you talk about thriving, you necessarily have to shift your focus inter-generationally, right?
It's much more about just surviving, it's now a matter of how do we thrive and I think our reproductive health is very much at the center of that because when you talk about thriving, you necessarily have to shift your focus inter-generationally.
Current Policy Efforts in the Space and Opportunities for New Legislation
Shawna Watley: It's funny you use the word thrive, because as you were talking, you know, I was thinking of that same word like, how do we get to a point where the community can thrive, even as they're managing sickle cell and living with sickle cell? And so, you know, Sonya, I know you've been in this space as a policy expert for a long time. Do you see any legislation coming forth or policies on the hill or things that can be taking place where we can be advocating in a more aggressive way in Washington on behalf of this important community?
Sonya Elling: Sure. So I think both Teonna and Phil, and I was going to ask them a question, too, about some of the ideas we've all talked about in that we've seen come from the NASEM report, the National Academy of Sciences, that had some great information and input from warriors, as well as from the scientific and medical community. And I think there are pieces from that Ash, we have to give a shout out to Ash, has been definitely trying to focus and increase not only funding, but as well as trying to move forward with some ideas in regards to how to have more coordinated care for people with sickle cell. And the one piece that I know that, Tammy, you and I and Shawna that we've been talking about and some others in the community that is also based from NASEM, is how do we figure out how to address Teonna, the experience you shared in regards to that disparities of care between oncology and sickle cell? And how do we encourage and recruit and support more physicians and more hematologists in the sickle cell space? And where do we, how can we do that and how can we all collaborate on that? And then obviously, I'll let Tammy probably speak, probably knows far more about HEAA, but I know that the Health Equity and Accountability Act has been present for quite some time and figuring out ways that we can potentially not only be supportive, but collaborate and find a way to weave the importance of ensuring equity for people with sickle cell as well through that.
Shawna Watley: And Tammy, did you have any thoughts or follow questions or Sonya? Did you have any follow up questions for Teonna and Phil as well?
Tammy Boyd: Well, my question is probably going to come a little later. I was going to ask, you know, just, you know, how can we I mean, we kind of, you know, Black Women's Health Imperative, we really try, we want to really again make sure we are doing things and implementing policy and advocacy around the lived experiences. And so what is it that we can do from our side to sort of to support you to help you in your journey?
Teonna Woolford: Well, I think that part of it starts with what we're doing right now, even just giving us a platform to share these experiences because you really don't have a lot of awareness around these issues. And then the other thing is like Sonya was saying, there's a lot of this that does have to come from the policy and legislation side, which just being fully transparent, like I am not that girl. I don't know a lot about policy or legislation, but I do know that there are policies in place for women with cancer or men with cancer, if they're going to be undergoing chemotherapy and radiation, that their insurance will cover fertility preservation. Whereas we don't have that. And unfortunately, just kind of due to the plot of sickle cell warriors, over 60 percent of this population is covered by Medicaid and Medicare, and we've already started engaging in conversations about how to address fertility preservation from a Medicaid and Medicare standpoint. And we literally have people who were like 'We don't want any parts of Medicare or Medicaid.' So even just helping us to figure out how to move and kind of advance that work.
Part of it starts with what we're doing right now, even just giving us a platform to share these experiences because you really don't have a lot of awareness around these issues.
Sonya Elling: I would love to have that conversation with you and work through and have some dialogue about how we can address that. And there is you are obviously correct because it's the latest number around like it's the majority of it's like 54 percent are in Medicaid. And so you did hit on an issue, once you bring the government into a situation and ensuring, you know, access there are significant challenges as well as a different path for education to try to get that access would love to continue that conversation with you.
Phillip Okwo: I think to the point of the question raised earlier by Tammy. As far as you know how we can help not just through platforms like this, but also leveraging the expertise that I think, you know, organizations like the Black Women's Health Imperative and others are, you know you guys definitely have capacity in certain respects that, you know, an organization like Teonna's, Sickle Cell Reproductive Health Education Directive. It is a mouthful. You know, we're still getting up to speed, and I think that is definitely an opportunity. And, you know, I think it will always be an opportunity. But I think in as much as there are a lot of learnings in the collaboration that right there is always going to be an opportunity, not just in raising awareness through, you know, platforms like this podcast, but even just in working together and kind of showing the ropes and seeing how the policy is made or the sausage, as they say sometimes is made. So I think that, you know, that is definitely something that is interesting. And I think that was perhaps one of the reasons why Teonna wanted to include me in this effort because I had, had some exposure to that in my time in Texas, both in helping to co-author and then to testify in front of the Texas House of Reps on behalf of legislation policy specifically for sickle cell. In this case, this was related to the use of opiates, opiate restrictions - there were exemptions for the oncology and cancer community, but none yet for sickle cell. And we didn't really have much by way of additional resources or treatments. And so to restrain the opiates for a condition as painful as sickle cell without other options for treatment is really, I would somewhat argue, cruel and unusual or inhumane. So it was it was very encouraging and comforting to see that legislation get passed in Texas, where we thought we might have had much more of an uphill battle than it than it did. I think it also telling this story helped to resonate and move legal action.
To restrain the opiates for a condition as painful as sickle cell without other options for treatment is really, I would somewhat argue, cruel and unusual or inhumane.
Shawna Watley: That's very, very impressive that you were able to do that with not a whole lot, I'm assuming your background is not in policy, for you to decide, you know, if not me, then who? And to move forward in faith and in saying look we're going to do this and you know, it's the law in Texas, but what about the other 49 states? Like, how does how does that work? And is there a movement for your legislation to be passed across the United States?
Phillip Okwo: You definitely hit the nail on the head there, Shawna. I think Teonna's big goal. I don't want to, I don't want to step on your announcement if you want to, if you want to make it Teonna. But I think we're definitely starting with a kind of state by state, and I think there's a recognition that it's going to start in the states and then probably we'll have to build a groundswell from there. But, did you want to you want to lay out the actual path forward Teonna?
Teonna Woolford: Yeah, I mean, it's kind of what we were saying earlier. We are trying to use Maryland as a case study. We have some people like some endocrinologists, some hematologists, even some policy makers who have expressed interest in wanting to help with this policy initiative as far as making fertility preservation more accessible. And that's kind of our plan. Because we know that while we are hoping for federal legislation, everything has to be executed on a state level, and that's kind of like my basic knowledge of policies. So we would love to have all of you kind of help us with that initiative.
Tammy Boyd: I would say absolutely. I mean, I'll echo what Sonya said, we can definitely, you know, talk off line about being helpful within legislation and maybe even, you know, also on the state, on the state level. So again, I mean, that definitely aligns with the mission of BWHI. So we're definitely supportive of that.
Sonya Elling: And based on what you just shared, you're not allowed to ever say that you're not a policy girl ever again cause you definitely have a firm handle on the federal versus state, Medicaid. So yup you're now a policy person.
Teonna Woolford: That's all I know.
Signs of Progress for the Community
Tammy Boyd: Are there things that you guys are, you know, as we talk are there other things that you all are hopeful about, as you know, in terms of what you're seeing now in terms of, you know, just I feel like there's a heightened awareness around sickle cell, but are there things that you're hopeful about that you're seeing out there?
Teonna Woolford: Yeah, absolutely. I think that this is an incredible time to be a sickle cell warrior, advocate because I mean, as an advocate, just even looking back five years ago, we're living in the times that we advocated for back then. To even have these kinds of conversations where you have doctors, warriors, caregivers, industry partners, all at the same table. That's something that wasn't happening. There is a heightened awareness. There's all these new therapies. For so long, we only had hydroxyurea, and now we have three new FDA approved drugs with over 70 coming down the pipeline. There's all this talk about gene therapy, so there's a lot to be excited about and then just what Phil and I were saying earlier, just this time where people are kind of rethinking and re-envisioning sickle-cell.
I think that this is an incredible time to be a sickle cell warrior, advocate because I mean, as an advocate, just even looking back five years ago, we're living in the times that we advocated for back then.
Tammy Boyd: Absolutely and Sonya, I don't know if you have some follow up questions.
Top Policy Issues That Could be Most Impactful
Sonya Elling: So and it may not fall into this area, but I would love to ask a little bit more about you've shared such great information, I think help us all learn more the challenges for people with sickle cell, especially in regards to access to fertility treatment and access and insurance coverage to some capacity. And you mentioned earlier the difference in care for oncology and sickle cell patients, but would love to get a sense from you. And I know you say you're not a policy person, but I really honestly believe the best policies are organic by nature. So much like Phil, all that you did in Texas and the grassroots effort down there to be successful in getting a law passed in Texas to ensure appropriate access to opioids for people suffering with sickle cell. Curious if you have any other top line policy issues that you think really are the most impactful if we could figure out how to address them.
Phillip Okwo: So I would say as far as the top three issues that come to mind. Again, I do believe that the emphasis on reproductive health is one that forces a conversation and forces healthcare providers to lift our gaze beyond just, you know, trying to perhaps alleviate our pain and to see us as at once both viable and worth investing. And then having those discussions about how we plan to raise a family, for those of us with sickle cell. But I think another really, really important area for me - I alluded to a little bit in terms of the discussion at the top of the conversation around my journey having a big role in the transition process and the transition from pediatric care to adult care again is a pretty major healthcare issue. I think that I've described it in other settings as kind of the healthcare Hunger Games, right? It's very much a lot of young adults who are kind of coming of age and then having to deal with what often feels like medical gaslighting in terms of showing up to get care and then being treated as though you're imagining it or you're making it up. And so oftentimes our community feels so frustrated, lost and unsupported that, you know, many of us, if we can be in the middle of the most intense pain crises and feel like it may not be worth it for us to muster up the effort to go and be seen clinically. And the reason why I think this actually all ties in quite neatly dovetails into the mission of SC RED, because this is the level upon which we need to start having some of those reproductive health conversations. So many would argue those discussions should be started before the transition process takes place. But as part of a broader conversation about how we can do a better, a much better handoff, that is something that I think is a big opportunity.
I think that I've described it in other settings as kind of the healthcare Hunger Games... It's very much a lot of young adults who are kind of coming of age and then having to deal with what often feels like medical gaslighting in terms of showing up to get care and then being treated as though you're imagining it or you're making it up.
And then I think thirdly, there's something to be said for those of us who again as warriors are starting to live a little bit longer. I celebrated my 40th birthday this year, which is a big deal because, you know, rather than a midlife crisis, some might argue I'm kind of on my third or fourth life based on what the prognosis was at the time I was born, but it is end organ damage. And so for those of us, as we're getting a little bit older and the cumulative impact of those sickle cell crises, how do they impact us, you know, in our kidneys and in our heart, in our liver? And how do we sustain, how do we ensure that what may have been a pretty positive quality of life outcome is able to persist through, you know, through this period where we're aging in a manner that we again as a group haven't necessarily been able to do historically. So those are three areas that I think are big opportunities, and I know that Teonna is going to have some good ones to follow.
Teonna Woolford: I think you honestly, I think you touched on it all from a policy standpoint. We talked about access to fertility preservation. And then, like you were saying earlier, the sickle cell community, they've been like unintended victims of the opioid crisis. And so we really need a push to get that exemption across the board. But, you know, I've just become so obsessed with this reproductive health. So that's really all that's in my per view right now, but I'm sure that once I accomplish some of these things with fertility preservation, I'll have a laundry list of other policy initiatives I want to tackle as well.
Push for Comprehensive Sickle Cell Education Initiatives: Healthcare Providers and Warriors Alike
Sonya Elling: I am curious, though, on that when you mention all the great work you're doing and your passion for fertility preservation. Curious, is there a role, is there a need for education of medical providers or is the initial focus which I completely understand the initial focus truly on making sure individuals have that access to fertility preservation, but it sounded like based on your earlier, your personal experience, there was - is it fair for me to say - some bias as well as some lack of awareness by some of the medical professionals that you experienced during your journey?
Teonna Woolford: Oh, absolutely. And like you're being polite, I don't have to be. So I think what you wanted to say was ignorance, there's a lot of ignorance. And so that is definitely something that is organization like, while we're prioritizing advocacy we also have plans for curriculums, not just for warriors, but for healthcare providers. And like, how are you talking to these patients? What are you saying to them? How are you perceiving them? Are you putting too much of your own agenda in when they come in for visits? So there's definitely a disconnect between warriors and providers, and it kind of grows as we age. So absolutely there is a need for more awareness and education of healthcare providers.
There's definitely a disconnect between warriors and providers, and it kind of grows as we age. So absolutely there is a need for more awareness and education of healthcare providers.
Phillip Okwo: And also, to that point, Sonya, I think one of the things that I'm excited to say that SC RED is doing in that area is developing a curriculum specifically both targeted towards patients so that they have a better understanding of kind of reproductive health over their lifespan, but also looking at developing the curriculum as far as like continuing education for healthcare providers, that also brings, you know, greater awareness as you indicated.
Sonya Elling: Yeah, the CME was what I was definitely on, my geeky policy brain was thinking for the continuing medical education and whether or not that would be an area for us to continue that dialogue. I know BWHI has been great in that area as well Tammy, and you guys have done some things in other spaces in that with other outside partners. So that sounds great. And as usual, you guys are doing great work and 12 steps ahead of me.
Teonna Woolford: And that's amazing because I've actually been researching like, how do we get CME certified or accredited or whatever for these courses, so that's definitely something. And then, you know, I would be remiss. We have two amazing co-founders, Dr. Kim Smith-Whitley, and Dr. Lydia Pecker, who have really brought to my attention that sickle cell warriors deserve a reproductive life plan. So even when you look at like CDC guidelines, sickle cell patients are not written into that. And so that's another thing that we're working on is really just - what I'm realizing is that with this reproductive health, it's so much bigger than sickle cell and for so long we've been kind of isolated, but this reproductive health umbrella really allows us to attach ourselves to other disease communities. So we deserve guidelines on contraception and Phil was talking about earlier, like genetic counseling. That's something that this community would really benefit from, that isn't necessarily accessible, either. And you know, we don't have a lot of high-risk OBs who are willing to take care of women with sickle cell. So there's definitely a lot of work to be done.
What I'm realizing is that with this reproductive health, it's so much bigger than sickle cell and for so long we've been kind of isolated, but this reproductive health umbrella really allows us to attach ourselves to other disease communities.
Tammy Boyd: That's very helpful, especially as you talk about access to genetic counseling. I mean, you're right. I mean, the reproductive health movement is definitely one, you know, it spans from the maternal health crisis all the way, as you said, to access to contraceptives. So definitely, you know, that's front and center. And you know, we're working a lot on that.
Sonya Elling: I think this has been great. Yeah, I'm good. And I didn't know if you want me to. I'm not trying to weave anything that we're good. I think this is great unless you guys mention and feel him anything else you think's important for people to learn and know about.
Phillip Okwo: You know, I think one of the things that I saw kind of in the dialogue prompts for this for this little sit down that I really, really definitely wanted to jump on was the one about, I guess, the quote attributed to Dr. King about how "our lives begin to end the day we become silent about the things that matter." And so I just really want to take a moment and just commend Teonna for being vulnerable, because this organization is at once very personal to her, but she's definitely standing up and she's speaking out about things that matter, you know, for people that in many cases the recipients, the people who receive the benefits of these efforts are likely to be people other than her, right? And so as somebody who is an alumnus of the same institution as Dr. King, you know, one of the principles we had indoctrinated us in our matriculation is that we are our brothers keepers. And so that very much extends into the warrior community. And in as much as this is, you know, black women's health imperative, you know, by extension, we are our sisters keepers as well. And so you know these things, these are the ideas that continue to inspire the work that we do. And I would probably also add to that I think Teonna was perhaps a little bit modest about is the global view that she had in terms of impacting word communities, not just here in the states but around the world. And so I think that for me is just one more reason to be inspired by her example.
Shawna Watley: Wow, what an amazing discussion. I am so inspired by Teonna and Phil, and I just hope that for those of you who are listening to this series that you were able to gain some important nuggets about how you can be more engaged and helpful to sickle cell warriors and be an advocate on behalf of those who cannot speak for themselves. And I just thank my co-hosts Sonya and Tammy for joining me today for being a part of such an important discussion and the work that you all are doing on a daily basis to advance this important issue here in Washington.