A closer look at sickle cell disease and policy
Sickle cell disease (SCD) is a common inherited blood disorder, affecting millions globally. It causes severe pain, organ damage and other complications that require lifelong care. While advances like gene therapy offer hope, many patients still face significant barriers to accessing quality treatment. Dr. Titilope Fasipe, assistant professor of pediatrics – hematology at Baylor College of Medicine and co-director of the Sickle Cell Program at Texas Children’s Hospital, discusses some of the policy issues impacting SCD.
Access to care and provider shortages
One of the most pressing issues is the shortage of adult hematologists who specialize in non-cancer blood disorders. Pediatric care for SCD is relatively well-structured. Children are typically diagnosed early due to newborn screening and connected to specialized clinics. But transitioning to adult care often is fragmented. Many adult hematologists focus on oncology broadly, leaving few experts in sickle cell care. “I can count on one hand the number of adult providers in Texas who truly specialize in sickle cell,” Fasipe said.
This shortage is driven in part by reimbursement models. Fasipe points out, “Oncology procedures are better compensated, making it financially difficult for providers to focus solely on non-malignant conditions like SCD. The result is a system where adult patients may see providers unfamiliar with the complexities of the disease.”
Insurance transitions also complicate access. “In Texas, Medicaid covers children and women of reproductive age, but many young adults lose coverage when they age out,” Fasipe said. “Without employer-sponsored insurance or access to affordable marketplace plans, patients often fall through the cracks.” Even though models of SCD care, exist not everyone is getting that care.
The challenge of transition
Transitioning from pediatric to adult care is more than a logistical hurdle. Fasipe notes that pediatric providers often build deep relationships with patients and families, offering holistic support. In adult care, however, patients are expected to navigate the system more independently, often facing skepticism, especially when seeking pain management.
SCD is a disease of pain, and unfortunately, that pain is frequently misunderstood. Fasipe says, “The opioid crisis has led to increased scrutiny of pain medication use, and patients with SCD are sometimes wrongly labeled as drug seekers or addicts. This stigma can often make emergency departments feel hostile, forcing patients to ’dress up’ and ‘put on their best behavior’ to avoid mistreatment.”
Advocacy efforts have led to revised opioid guidelines that caution against applying blanket restrictions to chronic pain patients, including those with SCD. But much more work is needed to ensure compassionate, informed care. 
Representation and media
SCD disproportionately affects people of African and Latinx descent, and the disease reflects broader systemic inequities.
“Sickle cell is the medical representation of the Black experience in America,” Fasipe said. “It’s a lens through which we can examine how race, healthcare and policy intersect.”
Media representation and public awareness are crucial. “The Emmy award winning show The Pitt on a recent episode did an excellent job of showing the inhumanity many face but also the impact when a doctor is knowledgeable about the disease, empathetic and appreciates the person behind the disease who deserves appropriate care,” Fasipe said. “It was inspiring to see.”
Looking ahead
Improving SCD care requires a lifespan approach: one that supports patients from infancy through adulthood. Standardizing care, expanding access to specialists, and addressing stigma are essential steps. As policy continues to evolve, it’s critical that sickle cell disease remains a priority in conversations about chronic illness and health equity in America and around the globe.
“We’ve made great strides to better understand the disease, we understand what helps save lives, now how do we actually get care to people. My hope for the future is more providers caring for SCD and more spaces where impacted individuals can get comprehensive care,” says Fasipe.
Get involved and learn more about advocacy efforts.
Learn more about Dr. Fasipe and team, who were recently announced as a MacArthur Foundation and Lever for Change 100&Change finalist
By Clarice Jacobson, lead, Business Strategy and Development, Center for Medical Ethics and Health Policy; the above is based on an in-depth conversation with Dr. Fasipe.
Any opinions, conclusions, and recommendations expressed in this article are those of the author and do not represent the views of Baylor College of Medicine.
