A Qualitative Study of State Medicaid Coverage Benefits for Allogeneic Hematopoietic Cell Transplantation (alloHCT) for Patients with Sickle Cell Disease (SCD)

Abstract

Introduction Sickle cell disease (SCD) is the most common inherited hemoglobin disorder affecting approximately 100,000 people in the United States (U.S.). Allogeneic hematopoietic cell transplantation (alloHCT) is currently the only curative option for SCD. However, alloHCT is an optional benefit under Medicaid, the largest health program in the US. This means that individual state Medicaid programs can chose to cover alloHCT, define the indications, clinical trial coverage, and/or determine the scope of key health benefits, including donor search, cell procurement, medication, travel and lodging. This study of coverage for alloHCT for patients with SCD aims to understand 1) scope of state Medicaid coverage benefits 2) transplant center (TC) financial counseling practices and experience working with state Medicaid programs. Methods Financial coordinators at active Blood and Marrow Transplant Clinical Trial Network (BMT CTN) 1503 clinical trial TCs in 12 states (CA, FL, GA, IL, LA, MI, NC, NY, OH, PA, TX and VA) estimated to have more than 50 newborns diagnosed with SCD in 2016 were contacted. Qualitative, semi-structured interviews 30-60 minutes in duration were conducted via telephone using WebEx teleconference by trained interviewers from Be The Match – NMDP, between May and October 2019. Interviews were recorded, transcribed and analyzed using content analysis, using computer assisted qualitative data analysis software (CAQDAS), NVivo 10. Results Of the 26 TCs contacted, a total of 9 TCs representing 7 states participated in semi-structured interviews (Table 1). Preliminary data analysis of interviews revealed that travel and lodging was the most common benefit with limited or absent coverage for alloHCT patients with SCD but showed wide variation by state. Clinical trials were inconsistently covered with some states following Medicaid guidelines for covering alloHCT as part of a clinical trial but not as standard of care while other states covered alloHCT as a part of standard care but not as part of a clinical trial. Conclusions There is wide variation in state Medicaid coverage benefits particularly for clinical trial coverage and travel and lodging. These data provide insight into potential areas to influence changes in policy in order to enhance access to life altering curative therapy for SCD.