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

Today, U.S. Senators Chris Van Hollen (D-Md.) and Cory Booker (D-N.J.), along with U.S. Representative Barbara Lee (D-Calif.), Danny Davis (D-Ill.), and Alma Adams (D-N.C.), 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 and the 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, the Sickle Cell Disease Partnership, and Linda Loma University Children’s Hospital.

“Headquartered in Maryland, the Sickle Cell Disease Association of America thanks its Senator, Chris Van Hollen, for his leadership in introducing the Sickle Cell Disease Treatment Centers Act. SCDAA represents 57 community-based organizations that do the challenging on-the-ground work of caring for sickle cell warriors and their families. This bill provides critical recognition for the work done by sickle cell disease CBOs and will help create a national infrastructure of centers for those living with sickle cell disease to get treatment. I want to thank Senator Van Hollen, Senator Booker, Congressman Davis, Congresswoman Adams, and Congresswoman Lee for their hard work on the Sickle Cell Disease Treatment Centers Act and their ongoing dedication to improving care and treatment for our sickle cell warriors,” said Regina Hartfield, President and CEO, Sickle Cell Disease Association of America, Inc.

“The American Society of Hematology (ASH) applauds Senator Van Hollen for introducing the Sickle Cell Disease Treatment Centers Act of 2024, which calls for the establishment of a national network of medical and community-based centers to advance and meet the health care needs of people living with sickle cell disease (SCD),” said 2024 ASH President, Mohandas Narla, DSc, distinguished scientist at New York Blood Center Enterprises. “As a Society with a long-standing commitment to improving care for individuals living with SCD, we are grateful for Senator Van Hollen’s dedication to addressing the burden of SCD and look forward to continuing to work with the Senator as the bill moves forward.”

“The Comprehensive Sickle Cell Disease program at Children's National Hospital supports the Sickle Cell Treatment Centers Act of 2024. This legislation will transform the lives of thousands of sickle cell patients in the US by providing needed resources and helping to close the gap in health care disparities. The proposed Hub and Spoke model will reach SCD patients in settings lacking sickle cell providers, improving overall care, increasing  access to disease-modifying and curative therapies, mental health services, newborn screening, disease education, and addressing social determinants of health. We are excited to partner with Senator Van Hollen and other co-sponsors of this important bill,” said Andrew Campbell, MD, Director, Comprehensive Sickle Cell Disease Program, Children's National Hospital.

“MSCDA is excited to learn that Sen. Chris Van Hollen (D-MD) is reintroducing the Sickle Cell Disease Treatment Centers Act,” said Derek Robertson, MBA, JD, CHC, President of the Maryland Sickle Cell Disease Association. “This Act will not only address the challenges outlined above through support for community based organizations, it also addresses the critical need for a structured approach to the provision of sickle cell care, especially for adults, through the establishment of sickle cell centers via a model that will expand the reach of existing centers.”

“The Sickle Cell Treatment Centers Act has the power to revolutionize access to care and uncover barriers that have made this disease so unassailable. The Hub and Spoke model will efficiently coordinate care between Sickle Cell Centers of Excellence and community stakeholders, so patient care does not fall through the cracks. This Act will address unmet needs in sickle cell care by supporting these centers to become centers of excellence, focusing on disease prevention and eradication through a unified, nationwide network,” said Dr. Akshat Jain, Director, Inherited Bleeding Disorders and Sickle Cell Hemoglobinopathies Program, Loma Linda University Children’s Hospital.