[Congressional Record Volume 170, Number 148 (Monday, September 23, 2024)]
[House]
[Pages H5578-H5580]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




   SICKLE CELL DISEASE AND OTHER HERITABLE BLOOD DISORDERS RESEARCH, 
          SURVEILLANCE, PREVENTION, AND TREATMENT ACT OF 2023

  Mr. BUCSHON. 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.
  The Clerk read the title of the bill.
  The text of the bill is as follows:

                               H.R. 3884

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Sickle Cell Disease and 
     Other Heritable Blood Disorders Research, Surveillance, 
     Prevention, and Treatment Act of 2023''.

     SEC. 2. REAUTHORIZATION OF SICKLE CELL DISEASE AND OTHER 
                   HERITABLE BLOOD DISORDERS RESEARCH, 
                   SURVEILLANCE, PREVENTION, AND TREATMENT.

       Section 1106(b) of the Public Health Service Act (42 U.S.C. 
     300b-5(b)) is amended--
       (1) in paragraph (3)(A), by inserting ``, grant, or 
     cooperative agreement'' after ``contract''; and
       (2) in paragraph (6), by striking ``$4,455,000 for each of 
     fiscal years 2019 through 2023'' and inserting ``$8,205,000 
     for each of fiscal years 2024 through 2028''.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from 
Indiana (Mr. Bucshon) and the gentleman from New Jersey (Mr. Pallone) 
each will control 20 minutes.
  The Chair recognizes the gentleman from Indiana.


                             General Leave

  Mr. BUCSHON. 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.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Indiana?
  There was no objection.
  Mr. BUCSHON. 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.

                              {time}  1515

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

[[Page H5579]]

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. PALLONE. 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. BUCSHON. Mr. Speaker, I yield 5 minutes to the gentleman from 
Texas (Mr. Burgess).
  Mr. BURGESS. 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. PALLONE. 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. DAVIS of Illinois. 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

[[Page H5580]]

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. BUCSHON. Mr. Speaker, I yield 5 minutes to the gentleman from 
Georgia (Mr. Carter).
  Mr. CARTER of Georgia. 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.
  Mr. BUCSHON. Mr. Speaker, I have no further speakers, I am prepared 
to close, and I reserve the balance of my time.
  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.
  Mr. Speaker, I yield back the balance of my time.
  Mr. BUCSHON. Mr. Speaker, in closing, I encourage a ``yes'' vote on 
the bill, and I yield back the balance of my time.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from Indiana (Mr. Bucshon) that the House suspend the rules 
and pass the bill, H.R. 3884, as amended.
  The question was taken; and (two-thirds being in the affirmative) the 
rules were suspended and the bill, as amended, was passed.
  A motion to reconsider was laid on the table.

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