May 04, 2023

Van Hollen, Booker, Lee Introduce Bill to Improve Access to Care for Sickle Cell Disease Patients

This week, U.S. Senators Chris Van Hollen (D-Md.) and Cory Booker and Congresswoman Barbara Lee (D-Calif.) introduced the Sickle Cell Care Expansion Act, legislation to strengthen the medical workforce that treats sickle cell disease (SCD) and provide funding for services to improve the quality of life for the increasing number of adult patients living with the disease.

“For Americans living with sickle cell, access to their doctors and treatments can be one of the biggest challenges they face. And while medical advancements over the years have enabled these Americans to live longer, the supply of care simply hasn’t kept pace with demand. This bill will help close this gap by increasing the size and capacity of the medical workforce that is trained to treat sickle cell. Better care is out there for sickle cell patients and their families, and our legislation will make it more accessible,” said Senator Van Hollen.

“Far too often, people living with sickle cell disease face systemic barriers to accessing the care they need to live full, healthy lives,” said Senator Booker. “I am proud to join my colleagues in introducing this bill that would invest in training and provide resources to healthcare providers, as well as increase awareness about SCD and available resources, so we can help improve outcomes and quality of life for those living with this disease.”

“The CDC estimates that at least 3 million people in the United States have the sickle cell trait which can lead to sickle cell disease, including 1 in 12 African Americans and 1 in 100 Latinos,” said Rep. Lee. “It's more important than ever that we combat sickle cell disease through comprehensive care and outreach, especially in communities of color and those who are medically underserved. I’m looking forward to advancing this legislation with Senators Van Hollen and Booker because it will encourage more doctors to engage in vital scientific research, outreach, and care for sickle cell patients.”

In 2021, a member of Senator Van Hollen’s legislative staff, John Amara Walters, died of complications from sickle cell disease at the age of 29. Since then, Senator Van Hollen has stepped up his efforts to defeat the disease and has been working with advocacy organizations and Walters’ mother, Kimberley H. Davis Walters, to improve access to SCD care.

“We are pleased to support this important proactive legislation which recognizes and provides more of the crucial funding required for the family of caregivers in the critical areas of increasing the number of health care providers treating sickle cell disease, securing more treatment options for patients transitioning from pediatric to adult sickle cell care and further buttressing the important role of community-based organizations, faith-based organizations, and clinics. This will provide impactful benefits to this wide community of sickle cell treatment and care in all 50 states where individuals and families living with sickle cell reside and contribute to their communities,” said Kimberley Davis, Co-Founder, KMD Advocacy Center and mother of the late John Amara Walters.

Sickle cell disease results from a genetic mutation that causes an individual’s red blood cells to distort into a C, or “sickle” shape, reducing their ability to transport oxygen throughout the body and causing serious symptoms such as intense pain, infection, and stroke. Approximately 100,000 Americans are currently living with SCD, the overwhelming majority of whom are Black, and Maryland has the 5th largest population of SCD patients at approximately 4,860. SCD has primarily been considered a childhood disease, as most patients have not survived to adulthood until recently as treatments and therapeutics have advanced. As such, there are fewer specialists to treat adult SCD patients than pediatric specialists, which is a key reason why Americans with sickle cell between the ages of 18 and 30 are more likely than any other age group to end up in the hospital multiple times because of their condition.

The Sickle Cell Care Expansion Act will 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 under which SCD falls. These incentives are designed to attract more providers to the SCD workforce, and in particular to meet the treatment needs of the growing number of adult SCD patients.

This bill also creates competitive grants to increase awareness about SCD and resources available to patients, and it provides additional resources for hospitals to further fund support services for young adults 18-29 transitioning from pediatric to adult care as well as research into the needs of this patient population.

This legislation has been endorsed by American Society of Hematology, Maryland Sickle Cell Disease Association, Sickle Cell Disease Association of America, KMD Advocacy Center, Johns Hopkins School of Medicine, and Loma Linda University Children’s Hospital.

“ASH is pleased to see the reintroduction of the Sickle Cell Care Expansion Act, a bill that establishes programs to provide additional resources for individuals living with sickle cell disease, and incentivizes young scholars dedicated to studying sickle cell disease with scholarships and loan repayment assistance programs,” said 2023 ASH President Robert Brodsky, MD, of Johns Hopkins University School of Medicine. “ASH has made a long-term commitment and investment to improving care for individuals living with sickle cell disease, including working to expand the number of hematology providers available to treat them. This legislation recognizes the need to build upon those efforts and make sustained federal investments in treatments, resources, and education to improve health outcomes for those living with this condition.”

“People living with sickle cell disease should be seen and treated by expert sickle cell clinicians. This bill will provide much needed funding support to increase the number of experts to meet the needs of this historically underserved community,” said Sophie Lanzkron, MD, MHS, Director of the Sickle Cell Center for Adults at Johns Hopkins School of Medicine.

“Sickle cell warriors across the nation are impacted by the shortage of physicians trained to treat their condition, often resulting in many hours of travel per week to receive critical treatment, or even foregoing treatment altogether. The Sickle Cell Disease Association of America, Inc. (SCDAA) hopes the Sickle Cell Care Expansion Act will incentivize many more healthcare professionals to pursue careers in hematology to improve access to the critical care our warriors need. SCDAA also supports the grant program included in this legislation for community-based organizations doing the vital work of educating the sickle cell warriors and their families, as well as funding for programs to assist vulnerable young adults during their critical transition out of pediatric care into adult care,” said Regina Hartfield, President and CEO, Sickle Cell Disease Association of America.

“Many persons living with SCD, especially adults, find it challenging to find qualified clinicians who understand and can effectively manage their disease. One reason for this is a lack of providers in the field of non-malignant hematology where SCD falls. The Sickle Cell Care Expansion Act will provide an incentive to providers to pursue a career in non-malignant hematology by a scholarship and loan repayment program that rewards work in this area. Clinical training is expensive and not having to worry about debt and repayment burdens. will drive early career professionals to the field of SCD. Partly because of the lack of care, the highest mortality rate in the SCD community is among our youth between 20 and 30 years of age. We are pleased that the Sickle Cell Care Expansion Act combines the focus on engaging more clinicians to enter the field with a specific grant program focused on the transition from pediatric to adult care. These grants will no doubt create innovative programs and strategies to improve the transition experience and with improved access to care, reduce mortality in this high risk group. Finally, the Sickle Cell Care Expansion Act recognizes the importance of community engagement in the success of programs aimed at improving the lives of persons affected by SCD. As a community-based organization, we have seen first-hand how important it is for those living with SCD to have community support through education, social services, mental health support and overall care coordination. The SCD community needs this innovative approach to addressing the critical needs of those living with this devastating disorder. The Sickle Cell Care Expansion Act is important to improving the lives of person living with SCD and it is for this reason, MSCDA gives it wholehearted endorsement of this bill,” said Derek Robertson, President, The Maryland Sickle Cell Disease Association.

“The Sickle Cell Care Expansion Act will make great strides in addressing the unmet needs of both sickle cell disease providers and patients. The Act will empower the next generation of health care providers that care deeply about this disadvantaged population by providing scholarships and loan repayment assistance. Most importantly, this legislation will create a roadmap for a seamless transition of care for children suffering from sickle cell disease as they enter into adulthood,” said Dr. Akshat Jain, Director, Inherited Bleeding Disorders and Sickle Cell Hemoglobinopathies Program, Loma Linda University Children’s Hospital.