Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018

Floor Speech

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Mr. BURGESS. Mr. Speaker, I move to suspend the rules and pass the bill (S. 2465) to amend the Public Health Service Act to reauthorize a sickle cell disease prevention and treatment demonstration program and to provide for sickle cell disease research, surveillance, prevention, and treatment.

The Clerk read the title of the bill.

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Mr. Speaker, I rise to speak in support of S. 2465, the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018.

The policy included in this legislation is something on which Congress has been working towards for years, as improvements for individuals with sickle cell have largely remained stagnant.

This text is similar to H.R. 2410, which was introduced by Representative Danny Davis and myself and passed this Chamber unanimously in February.

Mr. Speaker, I would like to thank Representative Davis, in addition to Senator Tim Scott and Senator Cory Booker for working with me on this important policy.

Since the passage of the Sickle Cell Anemia Control Act of 1972, the first law to address sickle cell, individuals living with this disease have seen a substantial drop in mortality rates; however, there remains work to be done.

According to the Centers for Disease Control and Prevention, there are approximately 100,000 individuals in the United States with sickle cell. Additionally, the disease occurs in 1 in 365 African American births, and in 1 in 13 African American births, the newborn has the sickle cell trait.

In the 1990s, the Food and Drug Administration approved hydroxyurea, which stimulates the body to resume production of fetal hemoglobin to treat sickle cell disease.

Last year the Food and Drug Administration approved Endari, which was the first new approved treatment in over 20 years.

I met with Dr. Janet Woodcock and Dr. Peter Marks to learn more about why the approvals have taken such a long time.

This bill would further our commitment to helping those with sickle cell by both continuing the Health Resources and Service Administration's Sickle Cell Disease Prevention and Treatment Demonstration Program and by allowing the Centers for Disease Control and Prevention to conduct surveillance of the disease and other heritable blood disorders.

The CDC's surveillance activity will allow for identification of health disparities, analysis of utilization of existing therapies, and evaluation of genetic, environmental, behavioral, and other risk factors.

Having worked with patients with sickle cell disease while at Parkland Hospital, I have seen firsthand the real consequences that this disease can have on people.

This bill provides an important step forward in ensuring that we have the resources to better understand this illness and maintain access for services for those affected by the disease.

While sickle cell disease has been addressed in bills like the 21st Century Cures Act, among other rare diseases, it has been a long time since this illness was substantially addressed in legislation.

The future of sickle cell disease treatment is bright if we pass this legislation and send it to President Trump. Better understanding of the landscape of sickle cell disease across the Nation and investing in new research for new treatments holds much promise for individuals and families who spend every day managing their disease.

Think of the children who have been unable to play or had to quit competing, or who have had to struggle through school because they are frequently absent due to the complications or pain from their underlying sickle cell illness.

The support this bill provides will enable public-private partnerships to take the reins to fight this disease head-on in communities across the country.

Mr. Speaker, I urge Members to support this legislation so we can send it promptly to the President's desk.
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I want to point out, Mr. Speaker, that this bill we are passing today has already passed the Senate. While we did work on a similar bill well over a year ago, this bill has passed the Senate. With our passage today, this bill goes down the street to the White House for signature to become law: the first major sickle cell bill to be enacted in quite some time.

It is a banner day for this institution that we are providing this help to citizens, fundamentally, on this very crucial problem that affects so many of our fellow citizens.

Mr. Speaker, I urge all Members to vote in favor of this bill, and I yield back the balance of my time.

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