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

September 27, 2024

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

Lawmakers announce bill during National Sickle Cell Awareness Month, observed in September

WASHINGTON - Today, U.S. Representative Barbara Lee (D-Calif.), Danny Davis (D-Ill.), and Alma Adams (D-N.C.), alongside U.S. Senators Chris Van Hollen (D-Md.) and Cory Booker (D-N.J.), reintroduced the Sickle Cell Disease Treatment Centers Act, legislation to improve access to care for Americans living with sickle cell disease (SCD). 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 they need.

The lawmakers' bill will grow the network of care for SCD by creating a "hub-and-spoke" framework for the delivery of care. The bill establishes a new annual grant program to provide federal funding opportunities for hospitals with existing SCD programs to expand their services to community health and outpatient centers, in order to help address the shortage of comprehensive treatment centers and so patients can access care and other services closer to their homes.

"For the tens of thousands of Americans living with sickle cell disease, the difficulty of finding care is not just an inconvenience - it could be the difference between life and death. Having lost a beloved member of my staff to this disease, improving access to care and services is personal to me. By giving existing sickle cell centers the capacity to share their resources beyond their walls, we can more easily expand treatment to the countless communities that don't yet have it," said Senator Van Hollen. "Better care and support is out there for sickle cell patients - and our legislation will help bring it within closer reach."

"This bill truly moves the needle in providing the national coordinated comprehensive care for sickle cell patients and families modeled on the successful national programs implemented at the National Institutes of Cancer for cancer patients, best practices learned from national comprehensive care for HIV/AIDs and Hemophilia patients, as well as the original national sickle cell program at NIH, National Heart, Lung and Blood Institutes - all treating life-threatening illnesses in a coordinated manner. Forward movement in equitable care, research and new and novel treatments for sickle cell patients across the nation can only occur with a national strategy that this bill presents with the establishment of the National Sickle Cell Coordinating Center structure. We look forward to this bill for all Americans being passed," said Kimberley Davis, the Executive Director of KMD Advocacy Center andthe mother of John Amara Walters, a member of Senator Van Hollen's legislative staff who died of complications from SCD in 2021 at the age of 29.

"Sickle cell disease has been historically overlooked and underfunded, and the diagnosis disproportionately affects the Black community," said Senator Booker. "By establishing a national network of treatment centers, we can work toward a future where comprehensive, accessible care for those suffering from sickle cell is a right, not a privilege."

"Sickle Cell Disease affects an estimated 100,000 people in the U.S. and millions of people carry the sick cell trait," said Congresswoman Lee. "And that this includes a large number of African Americans, who are disproportionally affected. We must invest in research, public health awareness, and disease prevention - especially in communities of color and medically underserved communities. I am proud to join my colleagues to address this disparity and other health inequities as we work to eradicate this disease."

"Sickle Cell is a disease that currently affects an estimated 100,000 Americans, with an additional 2 million carrying the trait," said Congressman Davis. "Furthermore, it is a disease that disproportionally impacts the lives of African Americans more so than that of any other ethnic group in the United States. Better treatments and outcomes for patient's affected by Sickle Cell Disease do not happen by chance. Rather, it comes as a product of the hard work and sacrifice by countless individuals across this great nation. Every day, progress continues to be made toward the advancement of more effective forms of medical care. I know that increased resources for research and clinical trials is the key to developing more effective medication options and a cure for sickle cell disease. As the co-founder and co-chair of the Congressional Sickle Cell Disease Caucus, I remain committed to championing the fight for quality, health care that provides a cure for Sickle Cell Warriors and their families."

"I personally know the pain and suffering that comes with sickle cell disease having watched my sister Linda succumb to it at age 26," said Congresswoman Adams. "Access to quality care is a social determinant of health. This bill makes it possible for families in need to receive critical care much closer to home and provides the resources to make health care equitable and accessible for all Americans."

The Sickle Cell Disease Treatment Centers Act would address the unmet needs of patients with SCD, sickle cell trait, and other inherited blood disorders through the establishment of and funding for 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 will enable hospitals that offer specialized SCD care to partner with more accessible community health centers and outpatient centers. This will 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. These comprehensive networks will be equipped to provide patients with:

• Integrated care management, including primary care, specialty care, and mental health services;
• Sickle cell trait testing and genetic counseling services; and
• Social services, including supporting patients navigate health insurance coverage and transportation to treatment centers, as well as education on disease management for patients, providers, and caregivers.

Additionally, the Sickle Cell Disease Treatment Centers Act establishes a National SCD Coordinating Center to work in collaboration with the Centers for Disease Control and Prevention's (CDC) SCD Data Collection Program. The Center would coordinate the National Sickle Cell Disease Treatment Centers Program and collaborate with the CDC to collect and maintain up-to-date data on SCD, and disseminate best practices, public awareness campaigns, and educational materials.

Text of the Sickle Cell Disease Treatment Centers Act is here, and a one-page summary is available here.

This legislation has been endorsed by Sickle Cell Disease Association of America, American Society of Hematology (ASH), Maryland Sickle Cell Disease Association, Sickle Cell Coalition of Maryland, Children's National Hospital, and Linda Loma University Children's Hospital.

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