TL/DR –
Dr. Sarah Reeves, an Associate Professor in Pediatrics and Epidemiology at the University of Michigan, studies sickle cell disease and seeks ways to improve the health of those living with it. In an interview, she revealed that sickle cell disease, which predominantly affects people of color, is under-resourced compared to other conditions due to systemic structural and institutional racism. Despite recent advancements such as expensive gene therapy treatments, progress is hindered by limited funding and a lack of access to high-quality healthcare for people with the disease.
About Dr. Sarah Reeves
Dr. Sarah Reeves is an Associate Professor in Pediatrics and Epidemiology at the University of Michigan. She dedicates her research to identify methods to enhance the health of individuals with sickle cell disease.
Useful Resources
Here are some relevant resources: Michigan Sickle Cell Data Collection (MiSCDC), Dr. Sarah Reeves, Sickle Cell Data Collection program and Expert Q&A: Reeves on the state of sickle cell disease in Michigan
Transcript
Today’s conversation with Dr. Sarah Reeves focuses on efforts to improve access to high-quality care and treatment for sickle cell disease. Sickle cell is an inherited blood disorder that predominantly affects people of color. Around 100,000 people across the US and approximately 4,000 in Michigan are affected. Despite progress, much work remains, says Dr. Sarah Reeves, who is researching ways to enhance the health of those living with this disease.
In understanding sickle cell, the terminology has evolved from ‘sickle cell anemia’ to ‘sickle cell disease’ to encompass the different subtypes. Sickle cell anemia is the most severe subtype, and about 60% of people with sickle cell have this type.
Sickle cell predominantly impacts Black and Hispanic communities due to the sickle cell trait. This trait is protective against malaria, which is more common in areas where these communities originate. If a child inherits the sickle cell trait from both parents, they have a 25% chance of having sickle cell disease.
Systemic, structural, and institutional racism have undoubtedly limited progress on sickle cell disease. It has historically received less attention, funding, and drug development compared to other conditions. Sickle cell disease is not just a health issue; it’s also a social justice issue.
The current political climate in the US has impacted the opportunity to advance treatment for sickle cell disease. For instance, the restructuring of the CDC and reduction of resources has put much of the funding for sickle cell disease in jeopardy. Despite this, Dr. Reeves is hopeful that bipartisan support for research on sickle cell disease will continue.
Dr. Reeves and her colleagues are working to overcome these barriers and improve access to treatments. For example, the FDA recently approved the first gene therapy treatments for sickle cell disease offering hope of eliminating symptoms. However, these treatments are expensive and require access to high-quality health care, something many with sickle cell disease do not have.
While some countries with universal health care may have different barriers to treatment, the US is unique in its newborn screening program. This program identifies and starts treatment for those with sickle cell disease from birth. Despite this, the lack of providers that care for people with sickle cell disease, particularly adults, is a global issue.
Patients with sickle cell disease often refer to themselves as ‘warriors’, reflecting the challenges they face to receive basic care. Dr. Reeves emphasizes the importance of involving the community and letting people with sickle cell disease share their stories to increase the quality of care and understanding of the condition.
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