September 15, 2022

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

Lawmakers Unveil Measure to Mark National Sickle Cell Awareness Month, observed in September

Today, U.S. Senators Chris Van Hollen (D-Md.) and Cory Booker (D-N.J.), along with U.S. Representatives Barbara Lee (D-Calif.) and Danny Davis (D-Ill.) introduced the Sickle Cell Disease Treatment Centers Act, legislation to improve access to care for Americans living with Sickle Cell Disease (SCD). Approximately 100,000 Americans are currently living with SCD, an inherited blood disorder that causes pain, infection, and stroke. The disease disproportionately affects Black Americans but is also found among people from different racial and ethnic backgrounds. But despite the prevalence of the disease and the need for consistent and coordinated treatment, few patients have access to multidisciplinary care teams. 

During a press conference on Capitol Hill to announce the new legislation, the lawmakers were joined by SCD patients, health care leaders, and advocates who discussed the importance of making Sickle Cell care more available and accessible through the new legislation. Also in attendance was Kimberley Davis, the mother of John Amara Walters, a member of Senator Van Hollen’s legislative staff who died of complications from SCD last year at the age of 29.

The lawmakers’ bill will grow the network of care for SCD by creating a “hub-and-spoke” framework for the delivery of SCD care. The bill establishes a new $535 million annual grant program to provide federal funding opportunities for hospitals with current 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, accessing care can be near-impossible. And the lack of accessible care is not just an inconvenience – for some patients it’s life or death. This gap in care is unacceptable. That’s why we’re introducing this legislation to broaden the reach of existing Sickle Cell centers so we can bring treatment into the countless communities that don’t yet have it,” said Senator Van Hollen. “A new national network of Sickle Cell care would redefine how we treat this disease in the United States – and ensure nobody falls through the cracks. This is the next step forward in a long fight to provide Sickle Cell patients with the services they need, and I’m committed to moving it across the finish line.” 

“This unprecedented legislation being introduced by Senator Van Hollen today, honoring my and our dear John, will make a measurable difference in the lives of families living with Sickle Cell Disease living in all areas of our nation. It cannot be underestimated how there will be a much more measurable positive trajectory of Sickle Cell Disease care and treatment achieved with these substantive underpinnings in funding and structure of care and support to this large important community. Adults, children, caregivers and families; medical, educational, social and community professionals—the entire Sickle Cell Disease family nationwide—will benefit from a sea of change that benefits all impacted. While we truly miss and long for John’s physical presence here today, his incredible legacy of public service contributions to the good of United States will live on,” saidKimberley Davis.

“Sickle cell disease is an inherited blood disorder that affects thousands of Americans, disproportionately people of African descent, with devastating outcomes,” Senator Booker said. “Despite being one of the most common genetic blood diseases, Americans with sickle cell disease continue to face barriers when trying to access comprehensive integrative treatment. That is why I am proud to introduce this bicameral legislation that will establish and fund treatment centers across the U.S. as well as vital training and education resources for patients and providers.”

“Even though sickle cell disease is the most common inherited blood disorder in the United States,Congress has not introduced a comprehensive and national bill on the disease since the National Sickle Cell Anemia Control Act of 1972. Over 3 million people in the US have the sickle cell trait, and many are unaware of their status. This includes a large number of African Americans, who are disproportionally affected. Senator Van Hollen, Senator Booker, Rep. Davis and I are working to address this disparity and other inequities and raise awareness among our colleagues.This bill is long overdue, and we won’t stop fighting until it’s on President Biden’s desk for signature,” said Representative Barbara Lee.

“Sickle Cell is a disease that currently affects an estimated 100,000 Americans, with an additional 2 million carrying the trait,” said Rep. 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.”

“The Sickle Cell Disease Association of America is composed of 53 community-based organizations that do the challenging on-the-ground work of caring for sickle cell patients and their families who have been left behind by our health system. With the funding in this bill for the hub-and-spoke model of care, these organizations will be ready to help create a national infrastructure for sickle cell patients to get treatment wherever they are. I want to thank Senator Van Hollen, Senator Booker, Congressman Davis, and Congresswoman Lee for their hard work on the Sickle Cell Disease Treatment Centers Act and their dedication to improving care and treatment for our sickle cell warriors,” said Regina Hartfield, President and CEO, Sickle Cell Disease Association of America.

“Children's National Hospital and its Comprehensive Sickle Cell Disease Program enthusiastically support the Sickle Cell Disease Treatment Centers Act of 2022. We believe this monumental healthcare legislation will benefit thousands of patients living with Sickle Cell Disease in the U.S. The network of 128 Treatment Centers and 110 community-based organizations will significantly mitigate the limited access to Sickle Cell Disease comprehensive care that many patients and families experience locally. The introduction of this legislation is a significant step in closing the health care disparities and addressing the unmet needs of Sickle Cell Disease patients and families,” saidAndrew Campbell, MD, Director, Comprehensive Sickle Cell Disease Program, Children's National Hospital.

This bill establishes a National Sickle Cell Disease Treatment Center Grant Program, authorized at $535 million annually, which will enable hospitals that offer SCD specialized care to partner with more accessible community health centers and outpatient centers to 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, outreach, and help coordinate social services for patients. These networks will be equipped to provide patients with: 

Comprehensive integrated care management for SCD, including primary care, specialized care, and mental health services;

Sickle Cell trait testing and genetic counseling;

Social work services as well as education on disease management to patients, caregivers, and providers; and

Support navigating health insurance coverage and support with transportation to treatment centers.

Additionally, the Sickle Cell Disease Treatment Centers Act establishes a national coordinating center to work in collaboration with the Centers for Disease Control and Prevention to oversee the hub-and-spoke networks as well as collect and distribute data, best practices, and other findings regarding the activities funded by the federal grants.

This legislation has been endorsed by Sickle Cell Disease Association of America, American Society of Hematology, Sick Cells, Maryland Sickle Cell Disease Association, Sickle Cell Coalition of Maryland, Johns Hopkins Medicine, Children’s National Hospital, and Loma Linda University Children’s Hospital.

“The American Society of Hematology (ASH) applauds Senator Van Hollen for introducing the Sickle Cell Disease Treatment Centers Act of 2022, 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. 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,” said ASH President Jane N. Winter, MD, of the Robert H. Lurie Comprehensive Cancer Center at Northwestern University’s Feinberg School of Medicine.

“MSCDA couldn't be more pleased that the Senator is continuing his support of Sickle Cell Disease with the introduction of this important legislation! This is an exciting time for the Sickle Cell Disease community. Three new therapies have been approved since 2017, more therapies are in various stages of development and curative options such as bone marrow transplants are improving, and gene therapy is very promising. However, without a comprehensive model of care and services being in place, access to, and knowledge of, these advances will not be realized by many. Sen. Van Hollen’s Sickle Cell Treatment Centers Act of 2022 will address the glaring gap in comprehensive care that exists for Sickle Cell Disease. We are pleased to see that the Act would create a system of comprehensive care centers that will be essential to ensuring those living with sickle cell will have access to current and future treatments. We believe that an important aspect of the Act is that it not only will provide access to treatment centers but also to services provided by community based organizations. The Maryland Sickle Cell Disease Association (MSCDA) endorses, without hesitation, The Sickle Cell Treatment Centers Act because it is precisely what the sickle cell community needs right now so that those that those affected by this devastating disorder can have access to the treatments that will allow them to live their lives to their full potential,” said Derek Robertson, MBA, JD, CHC, President of the Maryland Sickle Cell Disease Association. 

"You only have to see one child writhing in pain from sickle cell disease, to know what a historic missed opportunity it has been, to not have invested in “care and cure” for this dreadful condition that disproportionally affects the most disadvantaged group of people in the United States. 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. 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,” said Dr. Akshat Jain of Loma Linda University Children’s Hospital.

“The Sickle Cell Disease Treatment Centers Act of 2022 offers a bold, new, system-wide approach to structuring comprehensive care for Sickle Cell Disease. For a community that has lacked full medical and social support, relevant data, and needed auxiliary services for so long, this legislation illustrates what stakeholders might achieve through a collaborative approach with dedicated funding,” said Ashley Valentine, President & Co-founder, Sick Cells. 

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