As the nation commemorates National Sickle Cell Awareness Month, the Sickle Cell Disease Partnership is calling on Congress to pass three pieces of legislation that will increase access to treatment and improve the lives of the 100,000 plus Americans living with the disease. Together, the Sickle Cell Disease Comprehensive Care Act (H.R. 6216/S.3389), Sickle Cell Care Expansion Act (H.R. 7177/S.4425) and the newly introduced Treatment Centers Act of 2022 (H.R.8855/S.4866) will boost funding for research and increase access to life-changing treatment.
“The time for Congress to act is now,” said Brett Giroir, M.D., Senior Advisor, Sickle Cell Disease Partnership. “For too long, our nation’s efforts to address this painful, debilitating disease have been woefully inadequate, leaving patients and families behind – without access to high-quality care and without sufficient progress toward new treatments and cures. Sickle Cell Disease affects African Americans at a disproportionate rate, and frighteningly, nearly 1 in 12 are diagnosed as genetic carriers. For far too long, policymakers have stood on the sidelines. Congress can take a giant first step to addressing this significant health inequity by passing legislation this session and ensuring Sickle Cell warriors get the care and the support they need now.”
The Sickle Cell Disease Comprehensive Care Act (H.R. 6216/S. 3389) is bipartisan House and Senate legislation that authorizes the federal government to establish a demonstration program in up to 10 states to provide comprehensive care to Americans with Sickle Cell Disease who are low-income or disabled and receive health coverage through a state Medicaid program. The legislation would ensure such individuals in participating states have coordination of, and access to, clinical, mental health, and ancillary and support services they need because of their disease. The legislation would also require reporting and evaluation to study the results of the demonstration project.
The Sickle Cell Care Expansion Act (H.R.7177/ S.4425) is legislation in the House and Senate that would authorize a scholarship and loan repayment program to incentivize medical physicians to enter into the field of Sickle Cell Disease research and treatment. The bill would also award grants to health clinics, community organizations, and other local nonprofit organizations that work with individuals who have Sickle Cell Disease, to help improve health literacy, equip them with information on health and community services related to Sickle Cell Disease, and improve the care and treatment decision-making process related to the disease.
The Sickle Cell Disease Treatment Centers Act of 2022 (H.R.8855/S.4866) establishes a nationwide network of more than 120 Sickle Cell Disease Treatment Centers based on a hub-and-spoke framework and provides support for 100 community-based organizations. The legislation also creates a National/Regional Coordinating Center to coordinate the National Sickle Cell Disease Treatment Center Program and authorizes appropriations of $535,000,000 annually to address the issue.
This is a Hy-Lo News Staff Report.