WASHINGTON, DC – U.S. Sen. Cory Booker (D-NJ) hailed the signing into law of the bipartisan Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act – introduced by Booker and Senator Tim Scott (R-SC) in February and cleared by the Senate in October. The House sent it to the president’s desk last week. A companion bill in the House was introduced by Representatives Danny Davis (D-Il) and Michael Burgess (R-TX).
“Research and treatment efforts for sickle cell disease lags behind that of other chronic illnesses, even though it is the most common inherited blood disorder in our country,” Booker said. “This new law will improve the lives of people suffering from sickle cell disease, recognize the disease as a serious and debilitating illness, and allocate new resources to monitoring, researching, and treating it.”
The legislation seeks to improve sickle cell disease (SCD) treatment, research, monitoring, and prevention. 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.
The new law will allow the U.S. Department of Health and Human Services to issue grants to eligible entities (which include states, state or local health departments, and institutions of higher education) for the purposes of:
· Collecting data on sickle cell disease, including on its prevalence, geographic distribution, and the health disparities that exist; and
· Conducting public health initiatives with respect to the disease, including developing strategies to improve access to screening, treatment, and management for sickle cell disease.
The new law also reauthorizes and expands the Sickle Cell Disease Treatment Demonstration Program for four years.
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