Rafeek Yusuf, MD, PhD: Transplant Barriers Faced by Medicaid Enrollees with SCD

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Medicaid enrollees with sickle cell disease have limited access to clinical trials and out-of-state benefits. Barriers to treatment are multifaceted and occur at different levels of care.

Most individuals in the US living with sickle cell disease (SCD) rely on Medicaid for their health coverage. A study published in Transplantation and Cellular Therapy found that Medicaid enrollees with sickle cell disease have limited legislative policy to ensure access to clinical trials and provide out-of-state benefits including travel and lodging.1

Rafeek Yusuf, MD, PhD, director of Health Services Research, NMDP/Be the Match, and scientific director of CIBMTR, Minneapolis Campus discussed what this means and how he thinks the barriers around treatment of sickle cell disease are multifaceted.

"Depending on how you look at it, there are different clusters–from patients, I usually like to refer to patient as the recipient of the transplant, the caregivers and donors, that's one cluster where barriers can arise from," he explained. "Then, of course, committee physicians, the primary care physicians who are referring physicians, who refer this patient for transplant, and then when I get to the transplant centers, there are also barriers at those different levels."

When speaking specifically on patients, Yusuf said the barriers are both medicial and nonmedical, and often the nonmedical barriers have a prominent impact.

"The medical barriers will be, yes, genetic mutations in their genes and all of that, but more importantly, those social determinants of health-related barriers, those are nonmedical," he said, "from financial, to where the patients are born, where they live, where they grow, where they go to school, eat and play."

Additionally, as a condition that predominantly affects Black and Hispanic individuals, racial and ethnic barriers play a key role in sickle cell disease, and can serve as a proxy for several other factors, Yusuf mentioned.

However, when it comes to the referring physicians, their willingness and to refer a patient, or even to accept patients with Medicaid insurance, has an impact on the overall care for these patients. He continued to explain the obstacles occur at transplant centers around eligibility requirements to post transplant care related issues.

Rare Disease Day 2023 was recently observed on February 28, which serves as a day to honor those with rare disease like sickle cell disease, but also to raise awareness and progress the treatment for these populations.

"More awareness for patients, more awareness for providers, and even transplant centers, such that it doesn't have to be only those patients living with sickle cell disease that are aware of treatment options," Yusuf said.


  1. Mupfudze TG, Preussler JM, Sees JA, SanCartier M, Arnold SD, Devine S. A Qualitative Analysis of State Medicaid Coverage Benefits for Allogeneic Hematopoietic Cell Transplantation (alloHCT) for Patients with Sickle Cell Disease (SCD). Transplant Cell Ther. 2021 Apr;27(4):345-351. doi: 10.1016/j.jtct.2021.01.022. Epub 2021 Jan 29. PMID: 33836889.