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House Sends Bipartisan Booker Bill to Improve Outcomes for Sickle Cell Disease Patients to President’s Desk

Legislation was cleared by Senate in October; 90 percent of sickle cell disease patients are African-American

December 11, 2018

WASHINGTON, D.C. - The bipartisan Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act – introduced by Sens. Cory Booker (D-NJ) and Tim Scott (R-SC) in February and cleared by the Senate in October – will head to the President’s desk to be signed into law after the U.S. House passed it earlier today.  A companion bill in the U.S. House was introduced by Representatives Danny Davis (D-Il) and Michael Burgess (R-TX).

The legislation seeks to improve sickle cell disease 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.

“Even though sickle cell disease is the most common inherited blood disorder in our country, research and treatment lags behind that of other chronic illnesses,” said Booker. “Our legislation will help find new ways to improve the lives of people suffering from sickle cell disease. It’s time we start treating sickle cell disease as a serious and debilitating illness and allocate adequate resources to monitoring, researching, and treating it.”

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 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 bill will also reauthorize and expand the Sickle Cell Disease Treatment Demonstration Program for four years.

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