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

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.''

Mr. Speaker, I yield myself such time as I may consume.

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.

Mr. Speaker, I urge my colleagues to support the bipartisan reauthorization bill, and I reserve the balance of my time.

Mr. Speaker, I yield such time as he may consume to the gentleman from Illinois (Mr. Davis), who is the Democratic sponsor of the bill.

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.

Mr. Speaker, I yield back the balance of my time.

Mr. Speaker, I thank Dr. Bucshon from Indiana for yielding me the time on such an important reauthorization that we are undertaking today.

Mr. Speaker, 2018 was the last authorization for sickle cell research. Prior to that, it had been part of the 2004 Bush tax cuts, and it has been a long time since this Congress had turned its attention to the problems encountered by people who suffer from the diagnosis of sickle cell disease. Fortunately, in 2018, President Trump signed a bill into law, and now we are going to reauthorize that bill in this Congress.

That is a good thing.

I can remember sitting in a hearing in 2016 where the sickle cell disease advocate told us that it had been fully 40 years, four decades, since the Food and Drug Administration had approved a new therapy for sickle cell.

Fortunately, we are well past those days now, and on the horizon are a number of newer therapies. Ranking Member Pallone mentioned cell and gene therapies. A lot of work was done when the Committee on Energy and Commerce did the CURES bill in 2016. There are now newer therapies on the horizon that were not even contemplated the last time that this bill was authorized.

Mr. Speaker, I was in practice for 30 years. I worked with families and with patients suffering from this very complex disease. Proper treatment requires knowledge, intervention, and care coordination. It is important that we have the resources to encourage more research and more data to better inform how to evaluate treatment plans while improving the quality of life for patients.

This legislation will continue to improve physician and patient education, as well as assist with best practices for care coordination. By having access to these programs, the patient and the physician will continue to have the ability to identify the problem early on, providing more time to arrest the effects of the disease from having long-term effects on the well-being of the patient.

I certainly thank my fellow Members, Representative Carter of Georgia, and, of course, Representative Davis of Illinois for his longstanding work in this regard and for helping educate me as to the importance of advancing this research and advancing this reauthorization through the many steps it has taken over the last 20 years. I am grateful for the direction and the wise counsel provided by the gentleman from Illinois (Mr. Davis) on this important issue.

Once again, Mr. Speaker, I thank Representative Bucshon for yielding me the time, and I thank the committee for working on this important topic.

Mr. Speaker, I move to suspend the rules and pass the bill (H.R. 3884) to amend title XI of the Public Health Service Act to reauthorize the program providing for sickle cell disease and other heritable blood disorders research, surveillance, prevention, and treatment, as amended.

Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days in which to revise and extend their remarks and include extraneous material in the Record on the bill.

Mr. Speaker, I yield myself such time as I may consume.

Mr. Speaker, I rise in support of H.R. 3884, the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act led by Congressman Michael Burgess.

Sickle cell disease is the most common inherited blood disorder in the United States and impacts about

100,000 Americans. This disease causes red blood cells to become rigid and form into a crescent, or sickle, shape; restricts blood flow; and can lead to serious health problems throughout the body.

H.R. 3884 will continue important programs and activities administered by CDC and HRSA that are aimed to support research, prevention, and treatment for sickle cell disease and other blood disorders through fiscal year 2028.

It is critical to reauthorize this legislation so patients, families, and providers can be further educated on the condition and foster partnerships between clinicians and community organizations to help improve access to care.

Mr. Speaker, I encourage my colleagues to support this bill, and I reserve the balance of my time.

Mr. Speaker, I yield 5 minutes to the gentleman from Texas (Mr. Burgess).

Mr. Speaker, I yield 5 minutes to the gentleman from Georgia (Mr. Carter).

Mr. Speaker, I have no further speakers, I am prepared to close, and I reserve the balance of my time.

Mr. Speaker, in closing, I encourage a ``yes'' vote on the bill, and I yield back the balance of my time.

Mr. Speaker, I thank the gentleman for yielding.

Mr. Speaker, I rise today in strong support of the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act.

As a pharmacist for over four decades, I have seen firsthand the heartbreaking toll sickle cell disease takes on patients and their families.

Sickle cell disease is a destructive disease, attacking red blood cells in the body and causing patients strong episodes of pain over time.

Unfortunately, Georgia is home to one of the largest sickle cell disease populations in the country, which is why it is so important that we act quickly to save lives and prevent further pain.

The bill before us today reauthorizes critical sickle cell disease programs so that patients have the support and resources they need to battle this terrible disease. I have always and will always commit to putting patients first, and I believe these programs do just that.

Mr. Speaker, I thank Dr. Burgess for working on this important issue, and I urge my colleagues to support this legislation.