Van Hollen, Booker Introduce Bill to Improve Access to Care, Quality of Life for Sickle Cell Disease Patients

Today, U.S. Senators Chris Van Hollen (D-Md.) and Cory Booker (D-N.J.) introduced the Sickle Cell Care Expansion Act to improve access to medical treatment and quality of life for people suffering from Sickle Cell Disease (SCD). The Senators are introducing the bill ahead of World Sickle Cell Awareness Day on Sunday, June 19.

This bill, which complements legislation introduced earlier this year by Congressman Charlie Crist (D-Fla.), will enable the National Health Service Corps to provide scholarships and loan repayment assistance for those studying benign hematology – the specialty under which Sickle Cell Disease falls – making specializing in this field an easier financial decision and attracting more providers to the SCD workforce, which does not currently meet the needs of patients who are no longer receiving pediatric care. Additionally, this bill creates competitive grants to increase awareness about SCD and resources available to patients. The Senators’ legislation builds on the House version by providing more resources for hospitals to further fund support services for young adults transitioning from pediatric to adult care. 

“For too long Sickle Cell Disease has been an overlooked condition, which has left a shortage of medical professionals who can treat it and limited resources for young adults living with it,” said Senator Van Hollen. “Our bill will help close gaps in care that Sickle Cell patients often face, by training more doctors in the field and boosting access to comprehensive care and other services for young adults transitioning out of pediatric care. As promising treatments for this disease advance and patients live longer, we need to ensure this care is accessible to all who need it. We shouldn’t have to lose any more colleagues, friends, neighbors, or loved ones to this disease – and I’m committed to making that vision a reality.”

Last year, 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 address this issue.

“This is a long overdue and much needed step toward equity of treatment for the hundreds of thousands of sickle cell disease patients throughout this country,” Davis said. “Capacity building is crucial and I applaud Senator Van Hollen for his commitment and concrete steps with other Colleagues to constructively take action that will have a measurable impact in the lives of patients, families, treatment professionals and their support systems.”

“Despite the prevalence of sickle cell disease worldwide and in the United States, treatment options remain scarce and awareness efforts still lag behind other chronic illnesses,” said Senator Booker. “This bill will bolster efforts to provide comprehensive care to people with sickle cell disease by offering more resources to hospitals, increasing awareness, and encouraging aspiring doctors to specialize in the field of hematology.”

“Those suffering from Sickle Cell Disease know far too well that the sickle cell community suffers from a resource gap, especially for adult patients and those who treat them,” said Rep. Crist. “That is why the Sickle Cell Care Expansion Act is so important, because this community deserves our full support and it needs doctors who understand the unique needs of sickle cell patients. I’m thrilled that Senators Van Hollen and Booker have joined me in leading the charge on this effort. Let's get this done and save lives!” 

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. It affects approximately 100,000 people in the United States, the overwhelming majority of whom are Black. Maryland has the 5^th 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.

In summary, the Sickle Cell Care Expansion Act:

• Expands the National Health Service Corps to provide scholarships and loan repayment assistance for those studying benign hematology;
• Provides for the creation of competitive grants that would increase awareness about sickle cell disease and the resources available to those with SCD; and
• Builds on the House version by funding grants to hospitals that offer comprehensive sickle cell care to further fund support services, including mental health, for young adults ages 18-29 transitioning from pediatric to adult care.
• The grants can also be used for these hospitals to provide fellowships and programs to train more sickle-cell care specialists on the needs of young adults with SCD.

This legislation has been endorsed by the American Society of Hematology (ASH), Sickle Cell Disease Association of America (SCDAA), National Black Nurses Association, Johns Hopkins Medicine, Maryland Sickle Cell Disease Association (MSCDA), Children’s National Hospital, and Sick Cells. 

“The American Society of Hematology applauds Senator Van Hollen for introducing this legislation in the Senate to accompany and build on the progress of Rep. Crist’s bill in the House of Representatives. The bill aims to improve access to care for people living with sickle cell disease (SCD) by increasing the number of providers serving the SCD community and enhancing education, training, and outreach efforts in community-based organizations, academic institutions, and hospitals. As a Society with a long-standing commitment to improving care for individuals living with SCD, we recognize that the transition from pediatric to adult care can be challenging, so we are pleased to see that Senator Van Hollen’s bill makes additional provisions to support members of the SCD community during that transition,” said ASH President Dr. Jane Winter.

“A major barrier to receiving high-quality care for sickle cell warriors is the lack of access to medical professionals, such as hematologists, who are trained to treat sickle cell disease. Many of our warriors are routinely forced to choose between commuting for hours to see a specialist and receiving inadequate care. Nobody should need to travel out of state or great distances within the state during a crisis to be seen by a hematologist who understands their condition. The Sickle Cell Disease Association of America believes that the Sickle Cell Care Expansion Act will significantly increase the number of qualified physicians who specialize in sickle cell disease,” said SCDAA President and CEO Regina Hartfield.

“The National Black Nurses Association (NBNA) members support this effort of ensuring that an adequate supply of qualified physicians, advanced nurse providers, and scientists are available to work with the sickle cell disease (SCD) population. SCD affects 100,000 Americans; the majority of patients are African American or Hispanic, and one out of every 500 African American newborn has either the disease or trait. Thanks to treatment advances, patients are living longer. However, as these patients age-out of the pediatric health system, very few adult physicians and providers understand the treatment needs of these patients. More extensive training in medical and nursing schools are needed to improve the quality of life for the SCD population across the life-span,” said NBNA President Dr. Martha A. Dawson.

“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 

“Organizations such as MSCDA work every day to raise awareness about SCD with the goal of improving the lives of individuals affected by SCD. The goals of the Sickle Cell Care Expansion Act would go a long way in addressing many of the challenges faced by the SCD community. MSCDA wholeheartedly supports Sen. Van Hollen's efforts and stands ready to help in any way we can to make the goals of the Sickle Cell Care Expansion Act a reality,” said Maryland Sickle Cell Disease Association President Derek Robertson.

“Children's National Hospital and its Comprehensive Sickle Cell Disease program enthusiastically support the Sickle Cell Care Expansion Act as a companion to House Bill H.R. 7177. Expanding the number of sickle cell providers, increasing grants for hospitals to provide comprehensive care, and supporting the education of providers in benign hematology will help close the health disparities gap that patients and families experience living with sickle cell disease. We look forward to supporting and partnering soon on this important and needed sickle cell disease legislation,” said Andrew Campbell, MD, Director of the Comprehensive Sickle Cell Disease Program at Children's National Hospital.

“Sick Cells is pleased to support the Sickle Cell Care Expansion Act of 2022. We hope this will be the first in a series of innovative approaches to improving care and quality of life for individuals living with sickle cell disease across the country,” said Sick Cells Co-founder Ashley Valentine.

Text of the Sickle Cell Care Expansion Act is here.