HR0640 Summary

• Urges state and federal policymakers to ensure individuals with sickle cell disease have access to all approved medications, treatments, and services covered under Medicare and Medicaid programs, including new and effective treatments.

• Directs State Medicaid programs to conduct annual reviews of covered medications and services for sickle cell disease enrollees and solicit input from patients, caregivers, advocacy organizations, and healthcare professionals.

• Calls on State Medicaid programs to explore innovative reimbursement and coverage approaches, such as outcomes-based arrangements, to facilitate equitable access to potential one-time curative therapies.

• Urges state and federal governments to enhance data collection efforts to determine the prevalence of sickle cell disease, its health impacts, and to inform policies affecting the sickle cell patient community.

• Directs policymakers to examine regulatory barriers to patient access to novel therapies and remove impediments such as logistical and financial challenges that prevent patients from accessing potentially curative treatments.