Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2017

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.

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

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

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.

Mr. Speaker, I reserve the balance of my time.

Mr. Speaker, I yield 2 minutes to the gentleman from Georgia (Mr. Carter).

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

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.

Mr. Speaker, I rise today in support of H.R. 2410, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act.

I want to commend my friends Representative Danny Davis and Representative Dr. Michael Burgess for their tireless work in this space. Both of these men have a lifetime of service in the delivery of healthcare, the gentleman from Illinois (Mr. Danny K. Davis) and the gentleman from Texas (Mr. Burgess). I thank both of them for their incredible work.

I have been a lifetime advocate, Mr. Speaker, for addressing sickle cell disease, and I am proud to cosponsor this bill. I have done so in previous Congresses.

Sickle cell disease is the most common genetic blood disorder. It affects approximately 100,000 individuals, primarily African Americans, throughout the country.

Sickle cell disease awareness is significant to me for many reasons. One, because this disorder affects many of my constituents in North Carolina. It is significant, Mr. Speaker, because I had a dear cousin, whose name was Rubie Butterfield Mizell, who, in 1972, passed away from this disease in Opa-locka, Florida.

People with sickle cell disease have red blood cells with abnormal types of hemoglobin, often causing anemia, jaundice, and the formation of gallstones.

What is truly frightening is that sickle cell disease does not have a cure. The most widely used treatment for sickle cell disease was modern medicine 20 years ago that can reduce the number of episodes but does not eliminate them or their severity.

The health challenges facing people with sickle cell disease are enormous. The disease is widespread. The consequences can be dire, and that is why the Congressional Black Caucus and the Health Brain Trust of the Congressional Black Caucus have made these a priority in our agenda over the years under the leadership of the gentlewoman from Chicago, Illinois (Ms. Kelly).

People with sickle cell disease have a much shorter life expectancy, with median ages of death for males of only 33 years and for females of only 36 years. These patients are also more likely to have additional health complications, including stroke, blood clots, loss of vision, and lung and kidney failure.

There are approximately 4,400 people with sickle cell disease in North Carolina. I am sure that, Mr. Speaker, in the State of Texas, it may be even more. My hope is that someday there will be none.

That is why we must reauthorize the Sickle Cell Disease Treatment Demonstration Program to enable the Secretary of HHS to support research to increase our understanding of the disease, and create a grant program to study the prevalence of sickle cell and identify ways to prevent and treat sickle cell disease effectively.

Sixty-five percent of individuals with this disease in North Carolina have at least one emergency room visit per year. That is no way to live. I am sure Dr. Burgess, when he practiced medicine in his home State, saw many, many patients who were similarly situated.

We should do all that we can to help improve patients' lives, advance treatment, and find a cure. I am grateful for the opportunity to move this bill through the House, and I hope that my colleagues will join me in supporting it.

I thank Dr. Burgess, Mr. Davis, and Mr. Green for their work. All of these gentlemen have done a great job in this space.

Mr. Speaker, I rise today to express my support for H.R. 2410, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2017, that passed the U.S. House of Representatives on February 26, 2018. Today, the House of Representatives passed S. 2465, which is the Senate-amended version of H.R. 2410. As a co-sponsor of H.R. 2410 and the immediate past Chair of the Congressional Black Caucus, I rise to clarify the Congressional intent of this important legislation.

I commend my friends, Representative Danny Davis from Illinois and Representative Michael Burgess from Texas, for introducing H.R. 2410. I have been a longtime advocate for those with sickle cell disease and I am a proud co-sponsor of the bill in this Congress and in previous Congresses.

There are approximately forty-four hundred people with sickle cell disease in my home state of North Carolina. My hope is that someday there will be none. Sixty-five percent of individuals with sickle cell disease in North Carolina have at least one emergency room visit per year--that is no way to live. We should do all we can to help improve patients' lives, advance treatment, and find a cure.

That is why we must reauthorize the Sickle Cell Disease Treatment Demonstration Program to enable the Secretary of the Department of Health and Human Services to support research that will increase our understanding of sickle cell disease, and create a grant program to study the prevalence of sickle cell and identify ways to prevent and treat sickle cell disease effectively.

S. 2465 makes changes to the House-approved language that warrant clarification Notably, Sec. 2 of S. 2465 enables the awarding of grants related to heritable blood disorders, including sickle cell disease, for the purposes of research, surveillance, prevention, and treatment. It is imperative to stress that the intent of this language is to require that those grants be awarded for sickle cell disease research, surveillance, prevention, and treatment, at minimum. It is not the intent of the language for grants to be awarded related to other heritable blood disorders (e.g. hemophilia) instead of or in lieu of sickle cell disease.

Finally, Sec. 3 of S. 2465, reauthorizing the Sickle Cell Disease Treatment Demonstration Program, is intended to provide awards related only to sickle cell disease. It is not the intent of the legislation to allocate awards made under Sec. 3 for other heritable diseases.

Mr. Speaker, this legislation is intended to provide critical funding to assist those with sickle cell disease, and any awards made under Sec. 2 or Sec. 3 of this bill must be used for sickle cell disease response.

Mr. Speaker, let me just, first of all, commend Representative Burgess, chairman of the subcommittee, and Mr. Green, as well as Representative Butterfield and all of the members of the Energy and Commerce Committee, for their leadership in bringing this bill to this point at this moment.

As we just heard, sickle cell disease is an inherited blood disorder characterized by affected red blood cells that mutate into the shape of a crescent or sickle, and, as such, these cells are unable to pass through small blood vessels. It is a recessive genetic condition that occurs when a child inherits two sickle cell genes or traits from each parent.

The consequences and complications of this disease are extreme. The Sickle Cell Disease Association of America, with whom we have worked for many years, has 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. They are unpredictable in many ways, both the timing of when they occur--how severe they will be--and how long they will last. For those with the disease, these devastating pain episodes can start as early as 6 months of age and can span a lifetime, impacting school attendance and participation in the workforce. In fact, these pain crises contribute significantly to the 200,000 emergency room visits collectively made by sufferers of sickle cell disease each year in our country. A typical crisis will result in a hospital stay of 7 to 10 days.

Mr. Speaker, we have made a tremendous amount of progress in the treatment, research, and effective ways of dealing with this disease. I note that more than 20 years ago I worked with the project at the University of Illinois running a sickle cell education project, and I have seen much of that progress that we have talked about, but we still have a long way to go. There is still tremendous need for research. There is need for additional treatment modalities.

So, again, I thank all of those who have demonstrated support for this important legislation. I urge its passage.

Mr. Speaker, I rise in support to H.R. 2410, the ``Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2017.''

I support this bipartisan legislation because it will improve the way states study and monitor sickle cell disease.

This bill amends the Public Health Service Act to require the Department of Health and Human Services to make grants to states to:

Collect data on the prevalence and distribution of sickle cell disease;

Conduct sickle cell disease public health initiatives to improve access to care and health outcomes; and

Identify and evaluate strategies for prevention and treatment of sickle cell disease complications.

Mr. Speaker, it is estimated that:

Sickle cell disease affects 90,000 to 100,000; Americans;

Sickle cell disease occurs among about 1 out of every 500 Black or African-American births;

Sickle cell disease occurs among about 1 out of every 36,000 Hispanic-American births;

Sickle Cell Trait occurs among about 1 in 12 Blacks or African Americans.

If one parent has sickle cell 4 anemia and the other has sickle cell trait, there is a 50 percent chance (or 1 out of 2) of having a baby with either sickle cell disease or sickle cell trait with each pregnancy.

It is critical that infants with Sickle Cell are identified early.

Sickle cell-related deaths among African-American children younger than 4 years of age fell by 42 percent from 1999 through 2002.

This drop coincided with the introduction in 2000 of a vaccine that protects against invasive pneumococcal disease.

Many racial health disparities stem from lack of access to quality healthcare and proper health awareness.

Certain medical illnesses are known to be more prevalent in certain demographic groups, including type II diabetes, lupus, sickle cell anemia, and Triple Negative Breast Cancer for which African Americans are more than twice as likely to be diagnosed on average.

As a Member of Congress, I have been a staunch advocate for my constituents to find a cure for sickle cell disease.

Mr. Speaker, this bipartisan legislation will prepare states to combat sickle cell disease in the 21st century, while helping provide access to healthcare for Americans.

I urge all of my colleagues to join me in supporting the passage of