SICKLE CELL-ACCESS TO CARE

Urges State and federal policymakers to ensure that individuals with sickle cell disease have access to all medications and forms of treatment for sickle cell disease and to services for enrollees with a diagnosis of sickle cell disease that are eligible for coverage under Medicare and Medicaid programs and to work to include new and effective treatments. Further urges State Medicaid programs to conduct an annual review to determine if the available covered medications, treatments, and services are adequate to meet the needs of enrollees with a diagnosis of sickle cell disease and whether Medicaid should seek to add additional medications, treatments, or services. Further urges State Medicaid programs to proactively explore innovative reimbursement, coverage, and access approaches that may facilitate equitable and appropriate access to potential curative one-time therapies for eligible patients. Further urges State Medicaid programs and other State officials to convene a multi-stakeholder dialogue, including patients, caregivers, physicians, and hospital administrators, to inform and begin working toward policies that will support equitable and appropriate access to innovative sickle cell disease therapies. Further urges the State and federal government to explore enhanced and expanded data collection efforts to determine how many people live with sickle cell disease in the United States, how sickle cell disease affects their health, and how researchers can improve medical treatments to extend and improve the lives of people with sickle cell disease. Further urges State and federal policymakers to examine and address, when possible, the regulatory barriers that have and may continue to impede patient access to novel therapies, including one-time, potentially curative therapies. Further urges State Medicaid programs to ensure that sickle cell patients in State Medicaid programs have access to potentially curative therapies when those treatments are proven and federally approved. Further urges State and federal policymakers to take all necessary actions to identify and remove other impediments to patients and their families, such as logistical and financial challenges, including missing work, childcare, and other issues, that may prevent or otherwise impede all patients, including sickle cell patients, from accessing potentially curative therapies.