Bill Addressing Sickle Cell Disease/Heritable Blood Disorders Signed Into Law

The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 (S. 2465), was signed into law by the president on December 18, 2018. The bill reauthorizes a sickle cell disease (SCD) prevention and treatment program and provides grants for research, surveillance, prevention, and treatment of heritable blood disorders. It was introduced by Senators Cory Booker, D-New Jersey, and Tim Scott, R-South Carolina, in February 2018 and cleared the Senate in October 2018. The companion bill in the House of Representatives was introduced by Representatives Danny Davis, D-Illinois, and Michael Burgess, MD, R-Texas.

“As a physician who cared for patients with sickle cell disease at Parkland Hospital, I’ve seen firsthand the devastating effect it can have. The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act provides an important step forward in ensuring that we have the resources to better understand this disease and to maintain access to services for those affected by it,” Burgess said in a statement.

The legislation seeks to improve SCD treatment, research, monitoring, and prevention. It is estimated 90% of those affected by SCD 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 that of the average American.

The newly enacted law will allow HHS to issue grants to eligible entities (which include states, state or local health departments, and institutions of higher education) to:

• Collect data on SCD, including on its prevalence, geographic distribution, and the health disparities that exist, and
• Conduct public health initiatives with respect to the disease, including developing strategies to improve access to screening, treatment, and management for SCD.

The law also authorizes and expands the Sickle Cell Disease Treatment Demonstration Program for 4 years.

“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 in a statement. “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 president of the American Society of Hematology (ASH), Alexis A. Thompson, MD, MPH, thanked Congress and the president for supporting the legislation to improve SCD data collection and care.

“Individuals with sickle cell disease not only suffer from chronic, debilitating pain and are at risk for other serious complications, but many of them also lack access to the medical care they need," Thompson said in a statement. "By expanding efforts to better understand the prevalence and treatment needs of people with this disease, the bi-partisan Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 is the first step toward understanding where gaps exist so groups like ASH, policy makers, and healthcare providers can address the need where it is greatest."