WASHINGTON, D.C. – U.S. Senators Cory Booker (D-NJ) and Tim Scott (R-SC) today introduced a bipartisan bill to improve sickle cell disease treatment, research, monitoring, and prevention.

As part of the introduction of the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act, Booker will sit down with sickle cell disease (SCD) patients and advocates for a roundtable later this afternoon at 4PM ET. It will be live-streamed here.

“Sickle cell disease is a stark example of 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.”

“It’s long past time we start treating sickle cell disease as the serious and debilitating illness it is and allocate the necessary resources to monitor, research, and treat it,” Booker added.

“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.”

Sickle cell disease is a group of rare red blood cell disorders that cause debilitating pain, severe infections, and countless other health complications, including organ damage and stroke.  It is estimated that SCD affects 100,000 Americans an estimated 90 percent of whom are African-American – but the exact figure is unknown due to limited efforts to collect data on the disease.

Despite medical advances, SCD patients continue to have difficulty accessing care and knowledgeable providers, and the average life expectancy for a patient with the condition remains 20 to 30 years lower than the average American.

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; and

  • Identifying and evaluating strategies for SCD prevention and treatment.

The bill also reauthorizes and expands the Sickle Cell Disease Treatment Demonstration Program for four years.