New York: On September 15, Senators Chris Van Hollen (D-Md.) and Cory Booker (D-N.J.), along with US 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). The lawmakers unveiled the measure to mark National Sickle Cell Awareness Month, observed in September.
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.
The bill, along with all the prominent doctors and lawmakers also featured Indian American specialist Dr Akshat Jain of Loma Linda University Children’s Hospital.
“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,” he was quoted saying in the bill.