Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023

Floor Speech

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Mr. DAVIS of Illinois. Mr. Speaker, first of all, I thank Dr. Burgess for his tremendous advocacy on this and other legislative initiatives designed to improve the quality of health and healthcare in America.

Mr. Speaker, the consequences and complications of sickle cell disease are extreme. According to the Sickle Cell Disease Association of America, they have studied and reported that common complications with this disease include early childhood death from infection; stroke in young children and adults; lung problems similar to pneumonia; chronic damage to organs, including the kidney, leading to kidney failure, and to the lungs, causing pulmonary hypertension; and severe painful episodes. In fact, pain episodes are a hallmark of sickle cell disease.

More than 2.5 million Americans have the sickle cell trait. The sickle cell trait is found in 1 in 12 African Americans. There is a one in four chance that a child born to parents who both have the sickle cell trait will develop the sickle cell disease. The average lifespan for an adult with sickle cell disease is 45 years. The sickle cell disease affects an estimated 100,000 Americans, primarily African Americans, Hispanics, and other ethnic groups.

Mr. Speaker, I would also note that the devastation of this disease on those who are affected by it is, indeed, tremendous. I have had firsthand experience with it by virtue of having run a sickle cell community education project for the University of Illinois in Chicago and encountered many of the patients and their families. I saw the pain and suffering firsthand.

In 2004, Senator James Talent and I, along with our colleagues in Congress, introduced the Sickle Cell Disease Act, a bill designed to do more to improve the treatment and prevention of sickle cell disease. Specifically, as part of the American Jobs Creation Act, this bill was enacted.

In the 115th Congress, Senators Tim Scott and Cory Booker, Representative Michael Burgess, Representative G.K. Butterfield, and I sponsored the House companion bill to the Senate and supported a bipartisan and bicameral bill, S. 2465-enacted, the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018. This reauthorized law had continued to improve the treatment and preventive measures to reduce the risk factors of sickle cell disease, especially for the data collection part, which is the heart of the surveillance program in the law. This law expired in late 2023.

H.R. 3884, the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023, is a bipartisan bill by Representatives Dr. Michael Burgess; myself, Danny Davis; Representative Buddy Carter; and Barbara Lee. It is a companion bill to the Senate version S. 1852 by Senators Tim Scott, Cory Booker, and Raphael Warnock.

H.R. 3884 would extend the reauthorization of the sickle cell disease treatment demonstration program through FY 2028 that supports efforts to improve treatment, reduce risk and complications, and cure this disease.

Mr. Speaker, I urge all of my colleagues to vote ``yes.''

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