Sickle Cell Disease Partnership Calls for Passage of Key Legislation

During National Sickle Cell Awareness Month, Partnership Calls on Policymakers to Improve Health Access, Treatment

Washington, D.C. — 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.

About Sickle Cell Disease

Sickle Cell Disease is a rare, genetic blood disorder that primarily affects African American individuals. Sickle Cell Disease is inherited when a child receives two sickle cell genes—one from each parent. A person with Sickle Cell Disease is born with it.

Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body. In someone who has SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle.” The sickle cells die early, which causes a constant shortage of red blood cells. Also, when they travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious problems such infection, acute chest syndrome, lung problems, severe pain, and stroke.

About the Sickle Cell Disease Partnership

The Sickle Cell Disease Partnership is a multi-sector collaboration of health care stakeholders committed to advancing actionable federal health care policies that will improve the lives of patients living with Sickle Cell Disease. The Partnership’s main objective is to work collaboratively across the Sickle Cell Disease community to translate the recommendations of the National Academies’ 2020 report on the disease into legislative and administrative actions in Congress and the Executive Branch.

The members of the Sickle Cell Disease Partnership are:

Contact Us
To learn more about the Sickle Cell Disease Partnership, please visit www.sicklecellpartnership.org. Members of the media can reach our press office at: [email protected].