Van Hollen, Booker, Davis, Adams Introduce Bicameral Bills 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.) and U.S. Representatives Danny Davis (D-Ill.) and Alma Adams (D-N.C.) 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 were joined in introducing both bills by Senator Amy Klobuchar (D-Minn.) and Congressman Glenn Ivey (D-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.

"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."

"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."

"Growing up, my sister Linda was in and out of the emergency department 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."

"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.

"As co-chair of the bipartisan Rare Disease Congressional Caucus, I'm dedicated to making sure every person living with a rare disease, including sickle cell disease, can be swiftly and accurately diagnosed and have access to effective, affordable treatment," said Senator Klobuchar. "By working together with patients, researchers, advocates, and neighbors, Congress can ensure patients with sickle cell disease have the very best available medical care."

"I am proud to co-sponsor the Sickle Cell Treatment Centers and Care Expansion Acts and stand with the millions of Americans whose lives have been impacted by sickle cell disease. Across the country, too many families in the Black community continue to suffer from this devastating disease while research remains underfunded and this condition too often goes overlooked. We must do better, and we must act with urgency. I applaud the bipartisan leadership in both chambers of Congress working together to introduce and advance this legislation. Together, we can help deliver the resources and treatment to build a healthier future for generations of African Americans living with sickle cell disease," said Congressman Ivey.

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 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 American Society of Hematology (ASH) commends Senator Van Hollen for reintroducing the Sickle Cell Disease Treatment Centers Act and the Sickle Cell Care Expansion Act, which aim to advance the healthcare needs of individuals living with sickle cell disease. ASH remains deeply committed to improving care for individuals with sickle cell disease, and the Society is grateful for Senator Van Hollen's dedication in this effort. ASH looks forward to continuing to work with the senator as these bills move forward," said Robert S. Negrin, M.D., President, American Society of Hematology (ASH).

"Sickle cell disease affects families in every state, but the expertise to treat it is concentrated in a small number of centers, leaving too many patients without access to the care they need. At Children's National, we care for more than 1,500 children and young adults with sickle cell disease, and we see every day what comprehensive care can achieve. The Sickle Cell Disease Treatment Centers Act would build the national network this community has long needed, linking specialized centers with community health centers and local organizations, and connecting all of them through a National Coordinating Center. With a national network in place, every patient, no matter where they live, can count on expert care and access to the latest therapies. Thanks to advances in care, nearly all of the patients we care for will grow into adulthood. That is a victory, but it also means every one of them will need an adult sickle cell expert waiting on the other side of the transition, and too often there isn't one. The Sickle Cell Care Expansion Act addresses both halves of this problem: it invests in the transition programs that help young adults move safely from pediatric to adult care, and it builds the hematology workforce they will depend on for the rest of their lives. Our patients deserve a system that keeps its promise to them long after they leave our doors," said Dr. Andrew Campbell, Director, Comprehensive Sickle Cell Disease Program, Children's National Hospital.

"The Sickle Cell Treatment Centers Act has the power to revolutionize access to care and aid in understanding the barriers that have made this disease so unassailable. The Hub and Spoke model will allow care to be coordinated efficiently between Sickle Cell Centers of excellence and their community stakeholders so patient care does not fall through the cracks. It will address the unmet need in sickle cell disease care delivery, by supporting sickle cell centers to become centers of excellence, putting the focus on disease prevention and eradication as a unified nationwide network of treatment centers. With new transformative therapies like gene therapy available for children with Sickle cell disease now, this funding will help sickle cell lifespan centers to effectively build capacity to treat young children who likely will have a disease-free life ahead of them," said Akshat Jain, M.D., M.P.H., Medical Director, Sickle Cell Center of Excellence Children and Young Adult, Loma Linda University School of Medicine.

"September is Sickle Cell Awareness Month and The Maryland Sickle Cell Disease Association (MSCDA) could not be more thrilled to learn that Sen. Van Hollen is reintroducing both the Sickle Cell Care Expansion Act and the Sickle Cell Disease Treatment Centers Act. Both these Bills are of critical importance to the improvement of lives of persons impacted by sickle cell disease. Our community faces a shortage of providers with expertise in sickle cell disease, and the Expansion Act addresses that issue head on. Not only do we lack providers, we need more access to care in communities where affected families live. The hub and spoke model in the Treatment Center Act will bring much needed care to the communities where we are. This model is working right here in in Prince George's County, MD and we couldn't be more excited to see that the model could be expanded nationwide. The Expansion Act and the Treatment Centers Act, working together is exactly what we need to bring positive change to this devastating, life threatening disease. We applaud Senator Van Hollen's efforts and stand ready to do our part to bring these Bills to law," said Derek Robertson, M.B.A., J.D., C.H.C., President, Maryland Sickle Cell Disease Association.

"On behalf of the Sickle Cell Coalition of Maryland (SCCM), we support the introduction of the Sickle Cell Disease Treatment Centers Act and the Sickle Cell Care Expansion Act. We endorse new, innovative, and forward-thinking legislation that addresses two of the most urgent challenges facing people living with sickle cell disease: access to comprehensive, affordable care and the shortage of qualified clinicians. We also commend Senator Chris Van Hollen for his continued leadership and advocacy for holistic, affordable, and accessible sickle cell care. We support continued federal efforts that strengthen specialty care access, address workforce shortages, improve transition services, and invest in community-based support," said Teanika Hoffman, Executive Director, Sickle Cell Coalition of Maryland.

"Headquartered in Maryland, the Sickle Cell Disease Association of America, Inc. is grateful for Senator Van Hollen's leadership in introducing the Sickle Cell Disease Treatment Centers Act and the Sickle Cell Care Expansion Act. Both bills provide critical recognition for the work done by sickle cell disease community-based organizations, which are the backbone of the sickle cell disease community. Separately, the bills will help create a national infrastructure of sickle cell centers and expand the workforce needed to treat sickle cell warriors. I want to thank Senator Van Hollen for his 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.

"Sick Cells is pleased to support the reintroduction of these two important pieces of legislation, the Sickle Cell Care Expansion Act and the Sickle Cell Disease Treatment Centers Act. Together, they represent a bold approach to improving care and the quality of life for people living with sickle cell disease across the country through expansive and innovative strategies. The sickle cell disease community has long lacked comprehensive medical and social support, relevant data, and critical auxiliary services. A compounding factor of a limited amount of clinicians further exasperates the situation. These bills demonstrate what can be accomplished through collaboration, and dedicated federal investment. We hope these efforts will be the beginning of a sustained commitment to transforming sickle cell care and ensuring that every person living with sickle cell disease has access to the comprehensive support they need," said Ashley Valentine, Founder and CEO, Sick Cells.

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