ABOUT DR. SARAH REEVES:
Sarah Reeves is an Associate Professor in Pediatrics and Epidemiology at the University of Michigan. Her research is focused on identifying opportunities to improve the health of those living with sickle cell disease.
RESOURCES:
Michigan Sickle Cell Data Collection (MiSCDC)
STAT: "The crucial Sickle Cell Data Collection program is in jeopardy"
Expert Q&A: Reeves on the state of sickle cell disease in Michigan
TRANSCRIPTION:
David Fair: This is 89.1 WEMU, and on today's Washtenaw United, we're going to look at the ongoing effort to create greater access to high-quality care and treatment of sickle cell disease. I'm David Fair, and sickle cell is a blood disorder that mostly impacts people of color. This inherited disease impacts about 100,000 people across the country and roughly 4,000 right here in Michigan. There has certainly been some progress over the decades, but so much work to be done. Dr. Sarah Reeves focuses her research on identifying opportunities to improve the health of those with sickle cell disease. She serves as an Associate Professor in Pediatrics and Epidemiology at the University of Michigan. And thank you so much for making yourself available today, Dr. Reeves! I'm grateful!
Dr. Sarah Reeves: Thank you so much for having me! I'm looking forward to talking with you!
David Fair: The evolution of the medical profession's understanding of sickle cell continues to grow. What about that understanding resulted in the verbiage change from sickle cell anemia to sickle cell disease?
Dr. Sarah Reeves: Sickle cell disease is a term that refers to all different subtypes of sickle cell disease. There's about 40 or more different sub-types, and sickle cell anemia is one of the sub- types of sickle cell disease. About 60% of the people that have sickle cell disease have sickle cell-anemia, and, in general, it's the most severe sub-type of the condition.
David Fair: Why does it predominantly impact members of the Black and Hispanic parts of our community?
Dr. Sarah Reeves: That's a great question. Sickle cell trait, which is the form where you inherit one copy of the sickle-cell gene, it is actually protective against malaria. And so, due to that protection, sickle cell trait predominantly occurs in areas where malaria is more predominant. And then, when two people with sickle cell trait have a child, that child has a 25% chance of inheriting both of those copies and having sickle cell disease.
David Fair: To be very direct, has progress on this issue been limited because of systemic structural and institutional racism?
Dr. Sarah Reeves: Absolutely! Sickle cell disease historically has received less attention, less drug development, and less funding compared to other similar conditions. So, for example, cystic fibrosis receives about 400 times more foundation funding per person compared to sickle cell disease. And this is not to say that those funds should not go to cystic fibrosis, of course, but just that sickle cell disease should receive the same amount of attention, funding, and resources to try to improve lives.
David Fair: So, I think it would be fair to say then this is not just a public health issue. This is a social justice issue.
Dr. Sarah Reeves: Absolutely! And any work that we do around sickle cell disease, it's very important to consider that context and make sure we're talking with people with sickle cell disease and engaging the community as well and thinking about the broader impacts of what we're doing beyond just the research question we might be asking.
David Fair: Our Washtenaw United conversation with Dr. Sarah Reeves from the University of Michigan continues on 89.1 WEMU. And, Dr. Reeves, when it comes to these systemic issues and barriers, how does it inform the research that you and your colleagues are doing to help improve access to treatments with better outcomes?
Dr. Sarah Reeves: Sure. So, one thing that is happening right now in sickle cell disease, you were talking about the improvements over the last little bit, but so recently, the FDA approved the first gene therapy treatments for sickle cell disease. And these gene therapy treatment offer hope of eliminating these life-altering symptoms for sickle cell disease. However, the treatment is incredibly expensive, $2-3 million per person, And also, it requires having access to high-quality health care to be able to receive this gene therapy. And so, since we know that the structural and institutional barriers really play a large role in access to care for people with sickle cell disease, we've focused our work on how we can reduce these barriers to access to the care, so that these amazing, fantastic treatments can be available more broadly and more equitable for people with sickle cell disease.
David Fair: There's some large hurdles to overcome. I'm curious as to whether today's political climate in the U.S. is going to have an impact. The federal administration is shifting spending priorities in the Centers for Disease Control, National Institutes for Health, all among those impacted, and they've been instructed to operate differently and with less resources. What impact will that have on the opportunity to advance treatment and outcomes of sickle cell disease?
Dr. Sarah Reeves: Thank you for asking that question. Back in April, during the HHS reduction in force, our entire division from the CDC that funds a lot of this ground-level work to try to improve the lives of people living with sickle cell disease, the entire division was eliminated. That has left a lot our funding in jeopardy, and not only for the state of Michigan, where we have a lot of work going on around sickle cell disease, but 15 other states that are also funded by this program. And so, we're a little bit in limbo. We're not sure what's going to happen. We're not sure if our funding will continue. We have not received notification yet. And importantly, we have lost the structure that helps us coordinate our work across all the states and provide a place for people to meet and learn and translate our findings. It's very interesting because support for research for sickle-cell disease has always been a very bipartisan issue, both in the House and the Senate. And so we're hopeful that the support that we have on both sides of the aisle and recognizing how important it is to advance care for people with sickle cell disease will pan out with us being able to continue this work.
David Fair: The United Kingdom, Canada and about 29 other countries have universal health care. Are treatment and outcomes better in those countries?
Dr. Sarah Reeves: Not necessarily. There are different barriers in different countries. So, for example, in the United States, we have a program called newborn screening, which means that sickle cell disease is a condition on that, which mean that all the people in the United States that are born are screened for sickle-cell disease through a blood test. And so, we know who has sickle cell disease from birth and we can start these treatments that help save lives very early. Not all other countries have that, and that really impacts survival rates for young children. And also, irrespective of universal healthcare, having health care does not mean that you have access to health care that is appropriate or acceptable for you. And especially when we think about the barriers that face people with sickle cell disease, those still exist in other countries as well, obviously. And so, another issue that we have both in the United States and in other countries is lack of providers that care for people with sickle cell disease, particularly adults.
David Fair: If there's no money in it, they don't do it.
Dr. Sarah Reeves: Yeah. And so, there are other issues in other countries, but issues everywhere.
David Fair: This is 89.1 WEMU. Once again, we're talking with University of Michigan Associate Professor of Pediatrics and Epidemiology, Dr. Sarah Reeves, on this week's edition of Washtenaw United. You know, we've been talking about all of this in rather clinical and political ways. Sickle cell disease is deeply personal for those who have it and for the loved ones who support them. Do you have experience in dealing directly with people who are trying to work their way into and then through the system?
Dr. Sarah Reeves: Yes, absolutely! I do not have sickle cell disease. And so, working with people that have sickle cell disease and folks that care for people with sickle disease is extremely important. Those folks know more about their condition than any researcher or any provider that there is. And I have come over the last decade or so to have an incredibly high level of respect for the resilience and strengths that people with sickle cell disease and their families have and the joy that they have in their lives and the pride in navigating the system. And I really, really have a lot of respect for folks with sickle cell disease and the pressures that they have to go to receive basic care.
David Fair: There really is a badge of courage among those who navigate this system.
Dr. Sarah Reeves: Yes, definitely! Folks with sickle cell disease often refer to themselves as warriors, and I can't think of a better term to reflect the population of this people.
David Fair: In portions of the Black community, there is an understandable mistrust of the medical system and the bureaucracy that supports it. What kind of program investments are being made in helping people with sickle cell work through the realities of a medical system not necessarily designed to treat people that look like them?
Dr. Sarah Reeves: Absolutely! We've been thinking a lot about education, not an education that doesn't need to come from people with sickle cell disease out to people that are is aware of sickle cell disease, but starting at the broader level at the Michigan Department of Health and Human Services at the University of Michigan. Really, those of us that do not have sickle cell disease taking the lead in educating people about what this condition is like, what are the barriers to getting care, and then, also using that opportunity to tell the stories and let people with sickle cell disease tell their stories to understand that this is such an important aspect of life to increase the quality of care for these families.
David Fair: I'd like to thank you for taking the time and sharing the information today, Dr. Reeves! There's so much more we could talk about regarding this matter. Our time together, unfortunately, has come to an end for today, but I'll look forward to another opportunity to talk with you!
Dr. Sarah Reeves: Thank you so much!
David Fair: That is Dr. Sarah Reeves, she is Associate Professor of Pediatrics and Epidemiology at the University of Michigan and has been our guest on Washtenaw United. For more information on sickle cell disease and the work aimed at more progress, visit our website at WEMU.org. Washtenaw United is produced in partnership with the United Way for Southeastern Michigan, and we bring it to you every Monday. I'm David Fair, and this is your community NPR station, 89.1 WEMU-FM Ypsilanti. Celebrating 60 years of broadcasting from the campus of Eastern Michigan University!
WEMU has partnered with the United Way for Southeastern Michigan to explore the people, organizations, and institutions creating opportunity and equity in our area. And, as part of this ongoing series, you’ll also hear from the people benefiting and growing from the investments being made in the areas of our community where there are gaps in available services. It is a community voice. It is 'Washtenaw United.'
Non-commercial, fact based reporting is made possible by your financial support. Make your donation to WEMU today to keep your community NPR station thriving.
Like 89.1 WEMU on Facebook and follow us on X (Twitter)
Contact WEMU News at 734.487.3363 or email us at studio@wemu.org
