The Inequity of Access to Fertility Preservation Services in Patients With Sickle Cell Disease [ID 1685]

INTRODUCTION: One hundred thousand people in the United States are affected by sickle cell disease (SCD), with 90% identifying as non-Hispanic Black or African American and greater than 55% residing within 10 states. Sickle cell disease patients undergo gonadotoxic treatments, such as bone marrow transplants and chemotherapy, which negatively affect or eliminate their future fertility. Fertility preservation (FP) is recommended; however, patients with SCD are disproportionately affected by barriers that limit their access. States are adopting mandates to provide protections for FP, but many SCD patients are still unable to access this recommended treatment. METHODS: This study did not require IRB approval. The Resolve and the Alliance for Fertility Preservation websites were independently searched by two reviewers for laws mandating FP coverage. Using the NCSL database, state laws were cross-referenced for accuracy. RESULTS: Seventeen states have laws mandating private insurance coverage for FP, but SCD patients are eligible in only 14. In states where SCD is most prevalent, only five states offer mandates. Three states provide Medicaid coverage for FP. CONCLUSIONS/IMPLICATIONS: Many states have restrictions such as age, coverage specifically for cancer diagnoses, and exemptions for religious and self-insured employers that limit FP access. Medicaid is used by 50% of SCD patients; however, only three states (New York, Utah, and Illinois) provide Medicaid coverage for FP. Increased awareness among providers is warranted to improve the quality of fertility and family planning counseling, inform policy, and increase advocacy surrounding this issue.