Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023
Floor Speech
Mr. Speaker, I rise to speak in support of H.R. 3884, the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act.
This bill reauthorizes the sickle cell disease treatment demonstration program and data collection administered by the Centers for Disease Control and Prevention and the Health Resources Services Administration.
At our Energy and Commerce Committee hearing in June of last year, we heard directly about the importance of this reauthorization to continue critical Federal efforts to improve the lives of the approximately 100,000 Americans living with sickle cell disease. In my State of New Jersey, we have 2,000 cases of sickle cell disease, with an estimated 80 to 90 new cases each year. New Jersey is among the top 10 States with the highest prevalence of sickle cell disease.
Thanks in part to programs such as the bill before us, our Nation has seen improvements in data collection, newborn screening, and research efforts for sickle cell disease. However, there is still a lot of work to be done. Sickle cell disease patients still experience several barriers to appropriate treatment and care.
One barrier is underresourced care programs, leading many patients to rely on emergency care rather than regular, preventive treatment.
There is also still mistrust in the healthcare system among many African-American patients, socioeconomic disparities within the sickle cell disease community, and potential discrimination within our healthcare system. While considerable work remains before us, this is an important step to continue the necessary Federal investments to improve health outcomes, increase outcomes to innovative gene therapies, and lower the healthcare costs for many of the Nation's most vulnerable populations.
I thank Representative Davis and Dr. Burgess for their advocacy and leadership on this legislation. We know that with early diagnosis and support for effective evidence-based interventions, we can save lives.
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Mr. PALLONE.
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Mr. PALLONE. Mr. Speaker, again, I urge that we support this legislation on a bipartisan basis. Sickle cell disease is something that we need to continue to research and help with. This is an important bill in that respect.
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