[Congressional Record Volume 170, Number 144 (Tuesday, September 17, 2024)]
[House]
[Pages H5304-H5306]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
DeONDRA DIXON INCLUDE PROJECT ACT OF 2024
Mrs. RODGERS of Washington. Mr. Speaker, I move to suspend the rules
and pass the bill (H.R. 7406) to amend the Public Health Service Act to
authorize the Secretary of Health and Human Services to carry out a
program of research, training, and investigation related to Down
syndrome, and for other purposes, as amended.
The Clerk read the title of the bill.
The text of the bill is as follows:
H.R. 7406
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 ``DeOndra Dixon INCLUDE
Project Act of 2024''.
SEC. 2. DOWN SYNDROME RESEARCH.
Part A of title IV of the Public Health Service Act (42
U.S.C. 281 et seq.) is amended by adding at the end the
following:
``SEC. 404P. DOWN SYNDROME RESEARCH.
``(a) In General.--The Secretary, acting through the Office
of the Director of NIH, and in consultation with other
Federal agencies and partners, shall carry out a program of
research, training, and investigation related to Down
syndrome to be known as the `INvestigation of Co-occurring
conditions across the Lifespan to Understand Down syndromE
Project' or the `INCLUDE Project'.
``(b) Program Elements.--The program under subsection (a)
shall include research, training, and investigation related
to--
``(1) high-risk, high reward basic science studies of the
effects of chromosome 21 on human development and health;
``(2) assembling and maintaining a large study population
of individuals with Down syndrome;
``(3) expanding the number of clinical trials that are
inclusive of, or expressly for, individuals with Down
syndrome, including novel biomedical and pharmacological
interventions and other therapies designed to promote or
enhance activities of daily living;
``(4) the biological mechanisms in individuals with Down
syndrome responsible for structural and functional anomalies
in cells, tissues, and organs, cognitive and behavioral
dysfunction, and stunted growth;
``(5) the identification of biomarkers for the detection of
risk factors, diagnosis, and customized interventions and
treatments for conditions co-occurring with Down syndrome;
``(6) why several co-occurring conditions, such as
Alzheimer's Disease and autoimmunity, are prevalent in
individuals with Down syndrome and how such conditions can be
treated concurrently with Down syndrome; and
``(7) improving the quality of life of individuals with
Down syndrome and their families.
``(c) Coordination; Prioritizing Nonduplicative Research.--
The Secretary shall ensure that--
``(1) the programs and activities of the institutes,
centers, agencies, and offices of the National Institutes of
Health relating to Down Syndrome and co-occurring conditions
are coordinated, including through the Division of Program
Coordination, Planning, and Strategic Initiatives under
sections 402(b)(7) and 402A(c); and
``(2) such institutes, centers, agencies, and offices
prioritize, as appropriate, Down syndrome research that does
not duplicate existing research activities of the National
Institutes of Health.
``(d) Technical Assistance.--The Secretary shall provide
technical assistance to grantees and other involved entities,
as appropriate, for carrying out activities pursuant to this
section.
``(e) Biennial Reports to Congress.--
``(1) In general.--The Secretary shall submit, on a
biennial basis, to the Committee on Energy and Commerce and
the Subcommittee on Labor, Health and Human Services,
Education of the Committee on Appropriations of the House of
Representatives and the Committee on Health, Education,
Labor, and Pensions and the Subcommittee on Labor, Health and
Human Services, Education, and Related Agencies of the
Committee on Appropriations of the Senate, a report that
catalogs the research conducted or supported under this
section.
``(2) Contents.--Each report under paragraph (1) shall
include--
``(A) identification of the institute, center, agency,
office, or entity involved;
``(B) a statement of whether the research is or was being
carried out directly by the institute, center, agency,
office, or entity or by multiple
[[Page H5305]]
institutes, centers, agencies, offices, or entities; and
``(C) identification of any resulting real world evidence
that is or may be used for clinical research and medical care
for patients with Down syndrome.
``(f) Authorization of Appropriations.--
``(1) In general.--To carry out this section, there is
authorized to be appropriated $90,000,000 for each of fiscal
years 2025 through 2029.
``(2) Supplement, not supplant.--Funds appropriated to
carry out this section shall be used to supplement, not
supplant, other funds allocated by the National Institutes of
Health for research and other activities relating to Down
syndrome.''.
The SPEAKER pro tempore. Pursuant to the rule, the gentlewoman from
Washington (Mrs. Rodgers) and the gentleman from New Jersey (Mr.
Pallone) each will control 20 minutes.
The Chair recognizes the gentlewoman from Washington.
General Leave
Mrs. RODGERS of Washington. 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 on the bill.
The SPEAKER pro tempore. Is there objection to the request of the
gentlewoman from Washington?
There was no objection.
Mrs. RODGERS of Washington. Mr. Speaker, I yield myself such time as
I may consume.
Mr. Speaker, I rise today in support of H.R. 7406, the DeOndra Dixon
INCLUDE Project Act of 2024, which I have led alongside my colleagues
Diana DeGette, Tom Cole, Rosa DeLauro, Pete Stauber, and Eleanor
Holmes Norton.
As many know, one of my primary missions here in Congress has been to
improve the lives of individuals with disabilities. It is deeply
personal to me.
Our son, Cole, was born with that extra 21st chromosome, and for the
past 17 years, I have seen the world through his eyes. It has made me a
better mom and a better legislator.
When the INCLUDE Project was established in 2018, Down syndrome was
among one of the least studied and funded genetic conditions at NIH
despite being the most common chromosome abnormality, affecting 1 in
every 700 babies.
Individuals with Down syndrome also have an increased risk of common
diseases and medical conditions, such as cardiac issues, autoimmune
conditions, and an early onset Alzheimer's-type dementia, which means
the value of this research is hardly limited to the Down syndrome
community. It has the potential to provide benefits to millions of
people battling other conditions, as well.
The INCLUDE Project has made great strides, funding over 200 research
awards, producing at least 600 publications, and helping to coordinate
Down syndrome research and resources at over 20 institutes and centers.
H.R. 7406 will help us take Down syndrome research to new heights and
usher in a new era of breakthroughs to ensure that every person with
Down syndrome and their families have the opportunity to reach their
full potential.
Mr. Speaker, I urge 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. 7406, the DeOndra
Dixon INCLUDE Project Act, sponsored by Chair Rodgers and
Representatives DeGette, Cole, Holmes Norton, and others.
This bill would reauthorize for 5 years funding for the INvestigation
of Co-occurring conditions across the Lifespan to Understand Down
syndromE. It is known as the INCLUDE Project at the National Institutes
of Health.
This bill is named in honor of DeOndra Dixon, a lifelong advocate for
the Down syndrome community. DeOndra was born with Down syndrome and
was a tireless advocate for those with the disease. She was an awardee
of the 2009 Quincy Jones Exceptional Advocacy Award and a 2011
ambassador for the Quincy Jones Exceptional Advocacy Award.
Sadly, DeOndra passed away in October 2020, but her memory lives on
with her loved ones and the many people who she helped throughout her
years of advocacy.
H.R. 7406 honors her legacy by continuing to support and fund Down
syndrome research through the NIH.
Since its launch in 2018, the INCLUDE Project at NIH has been a key
mechanism to fund Down syndrome research. In my district, Rutgers
University received funding from the INCLUDE Project to study the
predisposition people with Down syndrome have for Alzheimer's disease.
Studies like these help the scientific community better understand
the disease and ensure those diagnosed with Down syndrome can live life
to their fullest potential. This legislation would reauthorize funding
for the program for 5 years and ensure that we continue to make
progress in Down syndrome research.
I thank Chair Rodgers for her leadership on this issue. She has been
a champion for people living with disabilities, and her advocacy for
the INCLUDE program demonstrates that ongoing commitment.
Mr. Speaker, I encourage my colleagues to vote ``yes'' to reauthorize
this legislation, and I reserve the balance of my time.
Mrs. RODGERS of Washington. Mr. Speaker, I yield 5 minutes to the
gentleman from Minnesota (Mr. Stauber), the dad of Isaac, most
importantly.
Mr. STAUBER. Mr. Speaker, I thank Chairwoman Rodgers for her support
and steadfast leadership on this issue.
Mr. Speaker, I rise today to speak not just as a Member of Congress
but as a father to a 22-year-old young man with Down syndrome. My son
is a living testament to the fact that his value and his potential
extend far beyond any limitations imposed by his disability.
Society must never devalue any human life for a perceived flaw or
defect. For too long, our society did just that with how it viewed and
treated people with Down syndrome, but when we stopped sending people
to institutions and started providing proper medical care, such as
surgery for those with a congenital heart defect, we saw their life
spans increase beyond what doctors told society was possible.
The DeOndra Dixon INCLUDE Project Act is a critical step toward
advancing our understanding of Down syndrome and improving the quality
of life for those living with it.
Named in honor of DeOndra Dixon, whose life exemplified resilience
and excellence, this bill seeks to advance our collective effort to
ensure that every individual, regardless of their circumstance,
receives the respect and care they deserve.
This legislation will provide crucial statutory authority for an
essential research initiative under the National Institutes of Health.
The INCLUDE Project dedicated to this cause will benefit from
solidified funding and framework.
This bill would enable sustained and coordinated efforts to address
not only the primary characteristics of Down syndrome but also the
occurring conditions that can impact individuals' health and well-
being, such as Alzheimer's disease, which was previously mentioned.
Individuals with Down syndrome have a completely different disease
spectrum than that of the general population, predisposing them to many
conditions but protecting them from others.
INCLUDE allows for more specialized research, which will lead people
with Down syndrome to live even longer, better lives, and it will
create breakthroughs in identifying treatments and cures for some of
the most devastating diseases that affect people like you and me.
Mr. Speaker, I urge my fellow Members to join me in voting ``yes'' on
the DeOndra Dixon INCLUDE Project Act. Let us stand together to support
this important initiative and ensure that scientific advancements lead
to tangible improvements in the lives of individuals with Down
syndrome.
Mr. PALLONE. Mr. Speaker, this is such an important bill that does
research on not only Down syndrome but other conditions, and I urge my
colleagues to support it on a bipartisan basis. I yield back the
balance of my time.
Mrs. RODGERS of Washington. Mr. Speaker, I encourage my colleagues to
support the bill, and I yield back the balance of my time.
The SPEAKER pro tempore. The question is on the motion offered by
[[Page H5306]]
the gentlewoman from Washington (Mrs. Rodgers) that the House suspend
the rules and pass the bill, H.R. 7406, 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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