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

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. President, as we close out Black History Month this week, I wanted to recognize a few people and initiatives that we are really excited about.

Yesterday, I joined Congressman Mark Walker, Chairman of the Republican Study Committee in the House, to host our Second Annual Historically Black Colleges and Universities Fly In.

We hosted Presidents and Administrators from HBCUs throughout the country, including four from my home State of South Carolina--South Carolina State University, Claflin University, Allen University and Benedict College.

We were able to host some great panels on ensuring curricula are matched with the needs of the workforce, how to best encourage entrepreneurship among students, and what steps we are taking at the Federal level to help our HBCUs provide an invaluable education for students for generations to come.

Representatives from the HBCUs heard from Google, McDonalds, Starbucks, Bank of America the Morehouse College Entrepreneurship Center, John Deere, Wal-Mart, the Center for Entrepreneurship & Economic Development, and the Koch Foundation. I also want to thank my friends Senator Lankford and Congresswoman Terri Sewell for joining us on our member panel.

For decades, HBCUs provided Americans of color with educational opportunities they would not have otherwise had. For generations, they have given low-income students an education they could not otherwise afford.

We have stood by them with the restoration of year-round Pell Grants, a top legislative priority from last year's fly-in, which benefits more than one million students.

I joined a bipartisan group of members of Congress, including Representative Alma Adams, to ensure an increase in the Department of Defense's HBCU and PMI grant program, boosting funding for this important collaboration to $40M.

And earlier this month, we saw the Environmental Protection Agency renew its partnership with Bowie State University to provide professional experiences and advanced resources to Bowie State students.

We will continue to stand with our HBCUs, and help ensure they are providing the opportunities sought by so many people of color and low- income families from across the Nation.

I also want to talk about legislation my friend Senator Booker and I introduced today to help combat Sickle Cell Disease.

Our Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act will do exactly what the title suggests . . . aid in fighting sickle cell through research, surveillance, prevention and treatment.

Currently, we don't really know exactly how many people have Sickle Cell Disease. There's no real surveillance and reporting in place at the Federal level, and only a handful of states have a reporting process.

To best battle Sickle Cell, we have to know the universe of what we're fighting against. So, our bill establishes the National Sickle Cell Disease Research, Surveillance, Prevention, and Treatment program to collect data on the demographics and prevalence of Sickle Cell as well as identify and evaluate strategies for prevention and treatment.

We're also reauthorizing the Sickle Cell Disease Treatment Demonstration Program (SDTDP) for four years, making some smart reforms and expanding support services for kids and young adults making the transition to adult care.

If you've ever met someone with Sickle Cell Disease, you know the pain they go through. You see how hard it is on their families to watch them suffer.

The Medical University of South Carolina has put so much effort into finding a cure, and over the past few years I've gotten to know some of the patients. Their perseverance is amazing.

We have taken some great steps forward, but we have to keep that momentum going. I want to thank Senator Booker again for joining me in this effort, and I look forward to our colleagues supporting the Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act.

Mr. President, Black History Month allows us to not only study and learn from our past, but to see where we can go in the future. Our Nation has made amazing progress in the past 50 years.

Without a doubt, there are still challenges ahead of us, and by remembering the strength of folks like Dr. Martin Luther King, the Friendship Nine, Cleveland Sellers, and so many other civil rights heroes, I am heartened that despite those challenges, we will continue to make progress.

Mr. President, as we close out Black History Month this week, I wanted to recognize a few people and initiatives that we are really excited about.

Yesterday, I joined Congressman Mark Walker, Chairman of the Republican Study Committee in the House, to host our Second Annual Historically Black Colleges and Universities Fly In.

We hosted Presidents and Administrators from HBCUs throughout the country, including four from my home State of South Carolina--South Carolina State University, Claflin University, Allen University and Benedict College.

We were able to host some great panels on ensuring curricula are matched with the needs of the workforce, how to best encourage entrepreneurship among students, and what steps we are taking at the Federal level to help our HBCUs provide an invaluable education for students for generations to come.

Representatives from the HBCUs heard from Google, McDonalds, Starbucks, Bank of America the Morehouse College Entrepreneurship Center, John Deere, Wal-Mart, the Center for Entrepreneurship & Economic Development, and the Koch Foundation. I also want to thank my friends Senator Lankford and Congresswoman Terri Sewell for joining us on our member panel.

For decades, HBCUs provided Americans of color with educational opportunities they would not have otherwise had. For generations, they have given low-income students an education they could not otherwise afford.

We have stood by them with the restoration of year-round Pell Grants, a top legislative priority from last year's fly-in, which benefits more than one million students.

I joined a bipartisan group of members of Congress, including Representative Alma Adams, to ensure an increase in the Department of Defense's HBCU and PMI grant program, boosting funding for this important collaboration to $40M.

And earlier this month, we saw the Environmental Protection Agency renew its partnership with Bowie State University to provide professional experiences and advanced resources to Bowie State students.

We will continue to stand with our HBCUs, and help ensure they are providing the opportunities sought by so many people of color and low- income families from across the Nation.

I also want to talk about legislation my friend Senator Booker and I introduced today to help combat Sickle Cell Disease.

Our Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act will do exactly what the title suggests . . . aid in fighting sickle cell through research, surveillance, prevention and treatment.

Currently, we don't really know exactly how many people have Sickle Cell Disease. There's no real surveillance and reporting in place at the Federal level, and only a handful of states have a reporting process.

To best battle Sickle Cell, we have to know the universe of what we're fighting against. So, our bill establishes the National Sickle Cell Disease Research, Surveillance, Prevention, and Treatment program to collect data on the demographics and prevalence of Sickle Cell as well as identify and evaluate strategies for prevention and treatment.

We're also reauthorizing the Sickle Cell Disease Treatment Demonstration Program (SDTDP) for four years, making some smart reforms and expanding support services for kids and young adults making the transition to adult care.

If you've ever met someone with Sickle Cell Disease, you know the pain they go through. You see how hard it is on their families to watch them suffer.

The Medical University of South Carolina has put so much effort into finding a cure, and over the past few years I've gotten to know some of the patients. Their perseverance is amazing.

We have taken some great steps forward, but we have to keep that momentum going. I want to thank Senator Booker again for joining me in this effort, and I look forward to our colleagues supporting the Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act.

Mr. President, Black History Month allows us to not only study and learn from our past, but to see where we can go in the future. Our Nation has made amazing progress in the past 50 years.

Without a doubt, there are still challenges ahead of us, and by remembering the strength of folks like Dr. Martin Luther King, the Friendship Nine, Cleveland Sellers, and so many other civil rights heroes, I am heartened that despite those challenges, we will continue to make progress.

Mr. President, I rise today to speak about the introduction of the ``Age 21 Act'' by Senator Flake and myself.

Two weeks ago, at Marjory Stoneman Douglas High School in Parkland, Florida, our Nation experienced yet another horrific mass shooting that has shocked the conscience of us all.

The shooter--a 19-year old former student of the high school--used an AR-15 military-style assault rifle that he legally purchased at a gun store, to kill former classmates and educators. Along with 14 wounded, 17 beautiful lives were lost in this horrific attack. Many of them were children and young adults. Their whole lives were ahead of them.

The overwhelming agony so many victims and their loved ones are experiencing is all too familiar to gun violence victims and survivors all across America. This palpable agony and grief has emboldened students from Parkland and all across this Nation to speak out about gun violence and demand that we as lawmakers act. I am deeply inspired by the courage of these young people, and I hope my colleagues will join me in working with them.

The bill that Senator Flake and I are introducing is straightforward and simple--it raises the minimum age to purchase a military-style assault rifle and high capacity ammunition magazines to age 21. In so doing, this legislation closes the loophole in current law that allows teenagers to legally walk into a gun store and buy an AR-15. It further prohibits private individuals from selling or transferring AR-15s to teenagers under the age of 21. In this way, it brings the minimum age requirements for buying handguns and military-style assault weapons into parity.

It makes perfectly clear that in America, if a person is not old enough to buy a handgun--or, for that matter, old enough to buy a beer--they should not be able to purchase a military-style assault weapon. In my view, this bill is one small step in the right direction. It was developed following the attack in Parkland that had students asking ``why was this teenager able to legally walk into a gun store and buy an AR-15?'' In fact, one student named Samuel Zeif, who lost his best friend in the shooting, asked President Trump why a young person in America ``can still go in a store and buy a weapon of war?''

So we worked in the spirit of bipartisanship to let Samuel, and these students, know that as lawmakers we hear them. And we will work together to make sure that they feel safe in their schools and in their neighborhoods.

So I'm proud of this bipartisan piece of legislation and would urge that this body take it up and pass it immediately. However, I would be remiss not to mention that so much more remains to be done. Already this Congress, I have introduced legislation to ban bump stocks and assault weapons from our streets. I've also introduced legislation that would provide states with a legal framework for courts to issue gun violence restraining orders to prevent dangerous individuals from accessing firearms. Additionally, nearly 100 percent of Americans support legislation that would require universal background checks on all gun sales, something that ordinary Americans are shocked is not already the law.

I ask my colleagues to work with us on these common-sense, broadly supported proposals. I strongly believe that lives are at stake. We can't continue to watch our children get slaughtered.

Martin Luther King, Jr. once said that ``we are confronted with the fierce urgency of now. In this unfolding conundrum of life and history there is such a thing as being too late'' and ``we must move past indecision to action.''

Today, as students and communities all across our nation cry out for stronger gun laws, this message continues to ring true. Now is the time for us to act, and to show the American people that we can come together when they are looking for leadership.

I yield the floor.

Mr. Speaker, I move to suspend the rules and pass the bill (S. 3029) to revise and extend the Prematurity Research Expansion and Education for Mothers who deliver Infants Early Act (PREEMIE Act).

Mr. Speaker, I ask unanimous consent that all Members 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 in support of S. 3029, the PREEMIE Reauthorization Act of 2018. This bill passed the Senate with robust bipartisan support, and I expect it will do the same in this Chamber.

This bill reauthorizes a program that is vital to the health and well-being of premature babies and their mothers. It is fitting that we have called this legislation to the floor following Prematurity Awareness Month, which took place the month of November.

While we are taking up the Senate bill, which was led by the Health, Education, Labor, and Pensions Committee, Chairman Lamar Alexander and Senator Michael Bennet, I would like to thank our House champions of this legislation, Representative Anna Eshoo and Representative Leonard Lance. I am pleased that we were able to rally bicameral, bipartisan support around improving the health of premature infants.

Preterm and low birth weight, combined, make up the second leading cause of infant death following birth defects. This legislation will increase research relating to preterm labor and delivery and the care, treatment, and outcomes of preterm and low birthweight infants.

Preemies and low birthweight infants are at risk for various health challenges and disabilities, and we still have much to learn about factors relating to prematurity. This bill allows for continued collection of maternal-infant clinical and biomedical information in conjunction with the Centers for Disease Control and Prevention's Pregnancy Risk Assessment Monitoring System. Such data collection and surveillance will allow the CDC, and national, State, and local health officials to have a better picture of what prematurity, including its causes and impacts, looks like in our country.

This legislation also requires the Advisory Committee on Maternal and Infant Health to publicly publish and submit to Congress a report on its activities and recommendations. That advisory committee has been tasked with

developing strategies to address gaps in Federal research, programs, and education efforts related to the prevention of severe maternal morbidity, maternal mortality, infant mortality, and other adverse birth outcomes. This ties nicely into H.R. 1318, the Preventing Maternal Deaths Act, which will also be on the floor of this House this afternoon.

Additionally, this legislation establishes an interagency working group, directing the Secretary of the Department of Health and Human Services to collaborate with other departments to improve coordination of programs and activities to prevent preterm birth, infant mortality, and related adverse birth outcomes. The working group is required to submit a report to the House Committee on Energy and Commerce and the Senate Health, Education, Labor, and Pensions Committee.

Mr. Speaker, I urge my colleagues to support S. 3029, and I reserve the balance of my time.

Mr. Speaker, I yield 2 minutes to the gentleman from New Jersey (Mr. Lance), one of the authors of this legislation.

Mr. Speaker, I have no additional speakers, and I reserve the balance of my time.

Mr. Speaker, I would just like to take a second and thank Representative Davis for his kind remarks, and I reserve the balance of my time.

Mr. Speaker, I urge all of my colleagues to support S. 3029, and I yield back the balance of my time.

Mr. Speaker, on that I demand the yeas and nays.