Scott, Booker introduce sickle cell disease legislation

 U.S. Senators Tim Scott (R-SC) and Cory Booker (D-NJ) have introduced a new initiative in the fight against sickle cell disease – the Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act.

There is currently no national framework in place to accurately measure the current number of Americans affected by SCD, and this new bipartisan legislation would increase efforts to collect data on the disease and reauthorize the Sickle Cell Disease Treatment Demonstration Program for four years.

“It is critical that we understand the full breadth of what we’re facing in the fight to cure Sickle Cell Disease,” Scott said. “This legislation marks a significant step forward in our efforts to combat Sickle Cell on all fronts – research, surveillance, prevention and treatment. We owe it to those suffering every day to do everything possible to find a cure.”

“I want to thank Senator Booker for helping introduce this important legislation, and I look forward to gaining even more support from our colleagues in the Senate,” he said.

“Sickle cell disease is a stark example of the disparate health services available to African-Americans compared to their white peers, with devastating effect,” Booker said. “Despite being one of the most common genetic and blood diseases, and the fact that we have known about it for more than 100 years, Americans with sickle cell disease continue to face a variety of barriers when trying to access care. Compare that to other diseases that impact a similar or even smaller number of people, which receive more attention, and at times, more resources to help patients.”

While the CDC estimates that 100,000 Americans suffer from SCD, the exact figure is unknown due to limited efforts to collect data on the disease. This legislation creates the National Sickle Cell Disease Research, Surveillance, Prevention and Treatment program to allow HHS to issue grants to no more than 20 eligible entities (defined as states, state health or public health departments and institutions of higher education) for the purposes of:
  • Collecting data on the demographics and prevalence of sickle cell disease.
  • Conducting public health initiatives with respect to the disease.
  • Identifying and evaluating strategies for SCD prevention and treatment.

The bill also reauthorizes the SDTDP for four years and a total of $18 million, which includes expanding support services for adolescents making the transition to adult care.