Podcast - Discussing the Mission of Black Women's Health Imperative with CEO Linda Goler Blount
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 (BWHI) 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, Policy Counsel for BWHI Kineta Sealey and Senior Director for Alliance Development and Government Affairs at bluebird bio Sonya Elling. They are joined by President and CEO of BWHI Linda Goler Blount. This discussion explores the mission and history of BWHI and the impact the organization has had on black women and women of color. Ms. Goler Blount, an epidemiologist, shares how her background as a scientist has allowed her to bring a different perspective to the organization and to policy discussions in the healthcare space. During this episode, the group highlights the growing healthcare disparities for those living with sickle cell disease and the role implicit racism and bias plays in the treatment of patients. Ms. Goler Blount shares insight on how policies can guarantee access and close gaps.
- Listen to Part 1: "Chirping" on Sickle Cell »
- Listen to Part 2: We Can Do Hard Things: Educate, Advocate & Inspire »
- Listen to Part 3: Talking Sickle Cell Trait with NFL Wide Receiver Ty Montgomery and Dr. Anjulika Chawla, MD, FAAP »
- Listen to Part 4B: Discussing Sickle Cell Research and Care with Dr. James Taylor VI, MD »
Shawna Watley: Hello, everyone, welcome to the Eyes on Washington podcast hosted by the Public Policy & Regulatory Group at Holland & Knight. We are very excited about what we're doing in the sickle cell awareness arena, and today I have my partners in crime here Sonya Elling with Bluebird Bio and Kineta Sealey with the Black Women's Health Imperative. We are so excited about our guests today and thank you for joining us, Linda Goler Blount, the president and CEO of Black Women's Health Imperative, and thank you again for your leadership. I am just so honored to be working with the Black Women's Health Imperative. I talk about you all everywhere I go on the Hill, just the phenomenal work that you all are doing and the level of excellence. I quite honestly haven't seen anything like it, and I just really appreciate all that you are doing and having the opportunity to work with you. So can you share a little bit about Black Women's Health Imperative and the work that you all do?
Linda Goler Blount: Well, thank you, Shawna, for those kind words, but also thank you for your leadership. A lot of people don't have to think about policy, but all of our lives are affected by policy. And so I am just honored and it's a privilege to work with you, but so proud of the work that you're doing and the fact that you keep going back to the Hill and you keep hanging in there trying to make sure that black women and women of color and all of us have access to the best healthcare possible. You know, it's true the Black Women's Health Imperative was founded 38 years ago. Our founder, Billy Avery, talked about how black women should take care of each other, but most importantly, black women should take care of themselves. So we began very much as a self-care group with sister circles and talking about what self-care meant at the time.
Our founder, Billy Avery, talked about how black women should take care of each other, but most importantly, black women should take care of themselves.
And over the past 38 years, we've gotten involved in actually programs, delivering programs to prevent chronic disease, maternal mortality, prevent HIV and to make sure that we have access to healthcare, but also very much in policy. We have a very strong policy shop where we work with members on the Hill. We work at the federal level and at the state level to make sure that policies promote health and those policies that might hurt our health, or our ability to be as healthy as possible don't become law. And in the last few years, since I've been with the Black Women's Health Imperative, what I've brought with me to BWHI is an emphasis on research. I think I'm the first scientist to be in this role and we've seen what happens when populations are left out of research. So not only do we conduct our own research, but we advocate for increased funding for research on conditions that disproportionately impact black women, to get more black women into clinical research and to make sure that we get the kind of outcomes that we're looking for when they participate in research. And so I'm just really happy to be here today to talk about an issue that frankly just hasn't gotten enough attention, in my opinion or enough research. And so I'm looking forward to the conversation.
We advocate for increased funding for research on conditions that disproportionately impact black women, to get more black women into clinical research and to make sure that we get the kind of outcomes that we're looking for when they participate in research.
Background as an Epidemiologist
Shawna Watley: Well, thank you for that. And you know, it's so interesting, I did not realize you were a scientist. Can you share a little bit of a bit about your background?
Linda Goler Blount: Yeah, I actually am an epidemiologist. And two years ago, nobody knew what an epidemiologist was and suddenly became the term on everybody's lips with COVID-19. But I've spent a lot of time looking at data, collecting data, analyzing data and then translating that data into programs into language so that people can understand what's really important and how to take care of themselves and into policy. And policymakers are, most of them, are in there trying to do what's best for people, but they're not scientists either. So somebody needs to help them understand what the science actually means for policy work and for systems work. So I have spent the better part of 25 years looking at all kinds of data, but also helping different organizations and partners come up with strategies to do something with that data. Because just having the data alone isn't enough, you have to understand what it means and then actually do something with it.
Just having the data alone isn't enough, you have to understand what it means and then actually do something with it.
Shawna Watley: Well, I know Sonya, you have a question or two for Linda, so I'll turn it over to you.
Most Impactful Policy to Date: The Affordable Care Act
Sonya Elling: Sure. Thank you, Linda, for joining us this morning. And I just wanted to kind of build off what you just talked about and all that, how important policy is and how it impacts everybody in their life, even if they're not cognitive of it and all the tremendous work that you have been doing, especially as the leader for BWHI. I was wondering if you could share with us what is the most innovative policy you've seen, proposed or enacted in recent years that you think can actually help start beginning to reduce healthcare disparities?
Linda Goler Blount: Hmm. Sonya, that's a tough question. You know, unfortunately, none of us can think of that thing that has made, you know, a transformative difference. But there has been progress. So the number one policy, of course, that comes to mind is the Affordable Care Act. It got millions of people who didn't have access to health insurance access in a way that was affordable. So in that sense, it wasn't transformative in that it's health insurance, but the fact that people now have access. I mean, now you know, it's single digits: the percentage of black women, for example, who don't have health insurance. The fact that we have it means that we can get our, well-woman visits, which means we can either get our breast cancers detected early when they're very treated or avoid cervical cancer altogether. We can prevent diabetes because we can be diagnosed at the pre-diabetic stage and then do the things that we need to do to prevent us from developing diabetes. We, you know, we can have our babies safely and get pre- and post-natal care. We can get access to medications and therapeutics that we might not have before. So there are some estimates that the Affordable Care Act alone among black women and women of color have prevented over 100,000 premature deaths. So that's major. And again, I say it's not transformative because it's health insurance, but in that regard, it absolutely is. And what we need are more policies that guarantee access because the things that we're talking about when we talk about health disparities are not biologic. They're not genetic. They have everything to do with who has access to quality healthcare and who doesn't, who has access to information, who has access to technology, who is included in research when these technologies and therapeutics are being developed and who isn't. So this is really an issue of knocking down the barriers, and the Affordable Care Act absolutely has done that. But we need to do much more.
There are some estimates that the Affordable Care Act alone among black women and women of color have prevented over 100,000 premature deaths. So that's major.
Building on Existing Policies to Create Lasting Healthcare Change: The Importance of Access
Sonya Elling: Thank you. I completely agree and I apologize, I probably should have said to you at the beginning that it was OK to even say we've made some steps towards progress, but there's a lot more to be done. So I shouldn't have put you on the spot saying what is the most innovative policy because I completely agree, a lot more to be done. So last year, in 2020, the Office of Minority Health had actually helped push forward and directed the National Academies of Science and Engineering to do a report and study into sickle cell disease. And in that report, they actually and I'm reading a direct quote from it, they say "American society has colossally failed individuals living with sickle cell disease who are mostly people of color." And I think to your point, I guess what I'm curious about is how we can build off the ACA, but also build off this moment that I think we're seeing in that COVID has unfortunately, has really amplified the inequities and disparities in our country, especially facing people of color. And then it's really been further amplified the challenges people with sickle cell have and are facing. And we have a new administration and a lot of focus on health inequities and kind of with your tremendous experience, wondering if this is going to be able to spur meaningful and lasting change, particularly for the sickle cell community?
Linda Goler Blount: Well, you know, I hope so. What we saw last year, it is interesting, I had a number of people say to me when the data started coming out about the disparities in COVID 19, 'Oh, I had no idea health disparities was such a thing.' And then we saw the brutal murder of George Floyd and others and people said, 'Oh, I had no idea racism was such a thing.' And then they said, 'Oh, I had no idea they were related.' But yes, we have been talking about this for a very long time and often people, as you know, Sonya talk about the social determinants of health or, you know, frankly, racism and gender discrimination are the social determinants of health because they determine those two factors, determine whether or not you have access to quality food or transportation or adequate housing, all of these other issues that also impact our health. And so with COVID-19 last year, for people living with sickle cell disease, a couple of things happened. One, many people were concerned and even afraid to go to their doctors because they didn't want to be in a setting that might expose them to COVID-19, because researchers and doctors didn't know if having that having the disease increased your risk for either infection or severe disease. We didn't know. And so people, you know, very reasonably decided, you know what, I'm going to stay home rather than take that chance. But then what we saw were more crises. We saw people living in more pain. We saw people not being able to manage their sickle cell disease. And that was really not the outcome we were looking for. And so more people showed up in the emergency department. But of course, that has its own issues.
Frankly, racism and gender discrimination are the social determinants of health because they determine... whether or not you have access to quality food or transportation or adequate housing, all of these other issues that also impact our health.
We've seen time and time again sickle cell patients showing up in the emergency department in pain crises, only to be treated as though they are seeking opioids rather than healthcare, and some literally being turned away and some dying because of that. So we had the conversation about mistrust of the medical care system around the COVID-19 vaccines, which is justifiable. People of color certainly have reason to distrust science and medicine because of our experience. And then on top of that, you had patients living with sickle cell who were concerned that they may be mistreated. But I'm trying to look at this on a positive note, we also saw what happens when people are left out of research that was very much in the conversation around, for example, the pulse oximeters that didn't work as well on people with dark skin. We saw that for COVID-19 patients who had severe disease, Dexamethasone seemed to be an effective treatment, but not for African-Americans. So when we look at the history of therapeutic development for sickle cell, it's really been only in the last few years that we've had some effective therapeutics. We went 40 years with nothing, one drug. So I'm hoping that in the scientific community and in the policy community and in the medical community, people are kind of waking up to the fact that we've got 100,000 Americans living with sickle cell. We need more therapeutics. And, you know, not that I'm comparing things, but we've got 30,000 cystic fibrosis patients and the funding for cystic fibrosis research is seven to ten times that for sickle cell. So I'm hoping that people see that we need to do something, we need more research, we need more researchers. We need people who want to ask the questions about what country of origin means for disease expression and actually conduct that research and turn that into effective therapeutics that we all can have access to.
We need people who want to ask the questions about what country of origin means for disease expression and actually conduct that research and turn that into effective therapeutics that we all can have access to.
Shawna Watley: Well, I couldn't agree with you more, Linda, and the timing of this is so appropriate. As you know, this marks the 50th anniversary of the first piece of legislation that was passed for research to be done related to sickle cell. And, to my knowledge, it's the first time legislation actually had to occur for research to actually be done. And so I'm just hopeful that more awareness is being brought to this issue and that folks like yourself and your organizations are just doing incredible things to make that happen. I know your colleague is on the call as well, and we would like to bring you into the conversation.
The Role of Implicit Racism and Bias in Healthcare Disparities
Kineta Sealey: So, Linda, you talked about right now the importance of how COVID-19 is affecting sickle cell patients and some of the findings, like the pulse oximeters, that we've found to be a significant problem for patients of color, some patients of color during this time. Can you talk a little bit more about implicit racism and bias and how that's important to the conversation to reduce healthcare disparities for our sickle cell patients.
Linda Goler Blount: Sure. Thank you for that question, Kineta. You know, we've been talking about medical bias and implicit bias for a number of years. I'm not sure that I agree that there is implicit bias. I mean it just is. It is in the way people interact with patients who are different from them. So, you know, some people say we're all biased. Yes, that's true, but it makes a difference in healthcare. For example, there was a study just two years ago, so 2019, that showed that 30% of young physicians believe that black people don't feel pain as much or as deeply as often as white people, that they actually believe that somehow our skin is thicker and we don't feel pain. Now, of course, that's absurd, but it makes a difference if I'm having a pain crisis and I see a physician and that physician doesn't believe I'm really in that much pain because that physician doesn't think I can feel pain like he or she might. And so that physician may be less likely to offer me pain medications. That's one.
There was a study just two years ago, so 2019, that showed that 30% of young physicians believe that black people don't feel pain as much or as deeply as often as white people, that they actually believe that somehow our skin is thicker and we don't feel pain.
But then you go to the other extreme, as I mentioned, where that physician might think I'm not in pain at all and I'm just there to seek drugs. I mean, this is a horrendous indictment of just human nature that people would think that I just wandered into an emergency department just to get opioids. But the point is, we've been talking about this for years, and we have not seen much change at all. So part of the way I look at the world is, you know, we're going to have to legislate behavior. There's all kinds of diversity training and anti-bias training that's out there. And one can even go 20 years back to the origins of DEI in medicine and see that it hasn't made any difference. We have not narrowed the gap. We have not reduced avoidable mortality. What we can do, though, is legislate behavior. I guarantee you if reimbursement for care of sickle cell patients was examined through an equity lens so that you know, quality measures where we need, you know, we shouldn't have more than, you know, X% of people living with sickle cell in crises or dying. And if that happens, provider, if you exceed that, we're not going to reimburse you. Somehow, miraculously, we would see a very different outcome for patients living with sickle cell disease. I've said the same thing about maternal mortality. If we looked at maternal mortality and reimbursed on the basis of race and ethnicity, somehow we would see the black maternal mortality rate drop dramatically. But right now, there's no penalty. There's no consequence for treating patients with sickle cell the way they are treated. And we're not unfortunately going to be able to pipeline our way out of this. We can't get enough physicians of color in the system to make a difference because we don't have the capacity. So we've got to figure out another way to change behavior so that patients living with sickle cell and all patients of color get the kind of respectful, quality treatment they deserve.
We can't get enough physicians of color in the system to make a difference because we don't have the capacity. So we've got to figure out another way to change behavior so that patients living with sickle cell and all patients of color get the kind of respectful, quality treatment they deserve.
Shawna Watley: Thank you so much, Linda, for joining us today. This has been a wonderful discussion. We really do appreciate you being a part of our conversation and thank you for the work that you continue to do on behalf of African-American women and the African-American community as a whole as it relates to health.
Kineta Sealey: Thank you, Linda, for your time today and talking about all the solutions and all the progress that BWHI is trying to make towards finding solutions for patients with sickle cell disease.
Linda Goler Blount: Thank you and thank you, Shawna, for this. This is really important, and I'm so glad you're lending your voice to this critical issue.