Adams, Davis, Van Hollen, Booker Introduce Bicameral Bills to Improve Access to Care for Americans with Sickle Cell Disease

WASHINGTON, D.C. ­- Today, Representative Alma S. Adams, Ph.D. (NC-12), alongside Representative Danny Davis (IL-07),Senator Chris Van Hollen (MD), and Senator Cory Booker (NJ) reintroduced two bills to improve access to care for Americans living with sickle cell disease (SCD) - the Sickle Cell Disease Treatment Centers Act, legislation to grow the national network of care for patients with sickle cell disease, and the Sickle Cell Care Expansion Act, legislation to strengthen the medical workforce that treats SCD. The members are joined in introducing both bills by Senator Amy Klobuchar (MN) and Congressman Glenn Ivey (MD).

In the United States, approximately 100,000 people are affected by SCD, a rare, genetically-inherited disorder that causes a person's red blood cells to become deformed and get stuck in their veins - blocking oxygen flow throughout the body and leading to chronic pain, infections, stroke, as well as kidney, liver, and heart disease. The disease disproportionately affects Black Americans, but people from other racial and ethnic backgrounds, including Hispanic Americans, are also susceptible. Despite the prevalence of the disease and the need for consistent and coordinated treatment, SCD care is most often accessible only in specialized medical centers in metropolitan areas - resulting in few patients having access to the multidisciplinary care teams and providers they need.

"Growing up, my sister Linda was in and out of the emergency room because of sickle cell disease. She lost her battle when she was just 26 years old,"said Congresswoman Adams. "Her story is one that I do not want to see repeated. That's why I am proud to introduce the Sickle Cell Disease Treatment Centers Act and co-lead the Sickle Cell Disease Care Expansion Act to increase access to specialized care for those suffering from this devastating illness."

"Considering the significant health challenges that sickle cell disease creates for individuals and families across the United States and around the world, we must invest greater resources in improving awareness, expanding access to comprehensive and coordinated care, advancing better treatments, and supporting research that can lead to new cures," said Congressman Davis. "For far too many sickle cell warriors, access to specialized care remains limited, particularly for those who live far from major medical centers. The Sickle Cell Disease Treatment Centers Act of 2026 takes an important step toward changing that by strengthening a national network of treatment centers and connecting specialized providers with community health centers and other organizations closer to where patients live."

"Sickle cell disease has claimed the lives of too many people far too soon, including a former staff member of mine, John Amara. For Americans living with sickle cell, access to care and qualified providers can be one of the biggest challenges they face. These bills will increase the size and capacity of the medical workforce trained to treat sickle cell, give existing sickle cell centers the capacity to share resources beyond their walls, and help ensure we can more easily expand specialized care and treatment to the countless communities that don't yet have it. We will not stop fighting to raise awareness, strengthen networks of care and support, and ultimately make sickle cell disease a thing of the past,"said Senator Van Hollen.

"Sickle cell disease has been historically overlooked and underfunded, and people living with it, who are disproportionately Black Americans, face systemic barriers to the care they need to live full, healthy lives," said Senator Booker. "I'm proud to join my colleagues in introducing these bills, which would invest in training and resources for healthcare providers, raise awareness about SCD and the support available, and establish a national network of treatment centers. Together, they move us toward a future where comprehensive, accessible care for everyone living with sickle cell disease is a right, not a privilege."

"The Sickle Cell Treatment Act bill enables the creation of the national coordination of care and advancements for sickle cell disease, which is the most prevalent life-threatening chronic illness affecting most ethnicities and races in this country - more than 200,000 individuals along with their families and support systems, all types of medical caregivers in over 10 specialties, researchers, and scientists. Data-driven focus and collaboration for best outcomes and practices for the sickle cell community is imperative as we are in the era of curative therapies, new treatments and medicines, and research enabling better understanding of sickle cell. Likewise, the Sickle Cell Care Expansion Act, providing needed funding of education of the sickle cell family of caregivers - doctors, nurses, researchers, psychologists, social workers, dietitians, phlebotomists, and others - is crucial for providing excellence in care and opportunities for more progress for individuals and families effected by sickle cell disease. Let's be clear, Sickle Cell disease has been severely underfunded, under-resourced, and undercounted in all areas. We must all pull together - there is more than enough work and room for every organization to contribute to the necessary progress for the improved treatment, access, and outcomes for the sickle cell disease family," said Kimberley Davis, the Executive Director of KMD Advocacy Center and the mother of John Amara Walters, a member of Senator Van Hollen's legislative staff who passed away from complications of SCD in 2021 at the age of 29.

The Sickle Cell Disease Treatment Centers Act, led by Congresswoman Adams, would address the unmet needs of patients with SCD, sickle cell trait, and other inherited blood disorders through the establishment of a nationwide system of treatment centers, as well as much-needed education, outreach, and social services for patients. It establishes a National Sickle Cell Disease Treatment Center Grant Program, which would enable hospitals that offer specialized SCD care to partner with more accessible community health centers and outpatient centers. This would implement a hub-and-spoke framework for the delivery of care and treatment of patients with SCD. The medical hubs and spokes would be required to partner with community-based organizations to provide education and outreach and help coordinate social services for patients. Additionally, the bill would establish a National SCD Coordinating Center to work in collaboration with the Centers for Disease Control and Prevention's (CDC) SCD Data Collection Program.

The Sickle Cell Care Expansion Act would enable the National Health Service Corps to provide educational incentives such as loan repayment assistance and scholarships for those studying benign hematology, which is the specialty SCD falls under. These incentives are designed to attract more providers to the SCD workforce to meet the treatment needs of the growing number of adult SCD patients. The bill would also create competitive grants to raise awareness of SCD and the resources available to patients and provide additional resources for hospitals to further fund support services for young adults ages 18-29 who are transitioning from pediatric to adult care, as well as research into the needs of this patient population.

Both bills have been endorsed by KMD Advocacy Center, American Society of Hematology, Children's National Hospital, Loma Linda University Children's Hospital, Maryland Sickle Cell Disease Association (MSCDA), Sickle Cell Coalition of Maryland, Sickle Cell Disease Association of America, the Sickle Cell Disease Partnership, and Sick Cells.

The full text of the Sickle Cell Disease Treatment Centers Act is here, and the full text of the Sickle Cell Care Expansion Act is available here.