[Congressional Record Volume 169, Number 205 (Wednesday, December 13, 2023)]
[House]
[Pages H6916-H6921]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
DR. EMMANUEL BILIRAKIS AND HONORABLE JENNIFER WEXTON NATIONAL PLAN TO
END PARKINSON'S ACT
Mr. BILIRAKIS. Mr. Speaker, I move to suspend the rules and pass the
bill (H.R. 2365) to direct the Secretary of Health and Human Services
to carry out a national project to prevent and cure Parkinson's, to be
known as the National Parkinson's Project, and for other purposes, as
amended.
The Clerk read the title of the bill.
The text of the bill is as follows:
H.R. 2365
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 ``Dr. Emmanuel Bilirakis and
Honorable Jennifer Wexton National Plan to End Parkinson's
Act''.
SEC. 2. NATIONAL PARKINSON'S PROJECT.
Title III of the Public Health Service Act (42 U.S.C. 241
et seq.) is amended by adding at the end:
``PART W--PARKINSON'S AND RELATED DISORDERS
``SEC. 399OO. NATIONAL PARKINSON'S PROJECT.
``(a) Definition of Parkinson's.--In this section, the term
`Parkinson's' means--
``(1) Parkinson's disease; and
``(2) all other neurodegenerative Parkinsonisms, including
multiple system atrophy, corticobasal degeneration,
progressive supranuclear palsy, and Parkinson's-related
dementia.
``(b) Establishment.--The Secretary shall carry out a
national project, to be known as the National Parkinson's
Project (referred to in this section as the `Project'), to
prevent, diagnose, treat, and cure Parkinson's.
``(c) Activities Carried Out Through Project.--In carrying
out the Project, the Secretary shall--
``(1) create, maintain, and periodically update an
integrated national plan to prevent, diagnose, treat, and
cure Parkinson's, ameliorate symptoms, and slow or stop
progression;
``(2) carry out the annual assessment under subsection (d);
``(3) provide information, including--
``(A) an estimate of the level of current Federal
investment in preventing, diagnosing, treating, and curing
Parkinson's, ameliorating symptoms, and slowing or stopping
progression; and
``(B) if applicable, an estimate of the investment
necessary to prevent, diagnose, treat, and cure Parkinson's,
ameliorate symptoms, and slow or stop progression;
``(4) coordinate research and services across all Federal
agencies related to Parkinson's;
``(5) encourage the development of safe and effective
treatments, strategies, and other approaches to prevent,
diagnose, treat, and cure Parkinson's, ameliorate symptoms,
and slow or stop progression;
``(6) improve the--
``(A) early diagnosis of Parkinson's; and
``(B) coordination of the care and treatment of individuals
with Parkinson's;
``(7) review the impact of Parkinson's on the physical,
mental, and social health of individuals living with
Parkinson's and their caregivers and families;
``(8) coordinate with international bodies, to the extent
possible, to integrate and inform the mission to prevent,
diagnose, treat, and cure Parkinson's, ameliorate symptoms,
and slow or stop progression globally; and
``(9) to the extent practicable, collaborate with other
entities to prevent duplication of existing research
activities for related disorders.
``(d) Annual Assessment.--Not later than 24 months after
the date of enactment of this section, and annually
thereafter, the Secretary shall carry out an assessment of
the Nation's progress in preparing for, and responding to,
the escalating burden of Parkinson's, including--
``(1) recommendations for priority actions based on the
assessment;
``(2) a description of any steps that are planned or have
already been taken to implement such recommendations,
including
[[Page H6917]]
whether such recommendations can be implemented under
existing law; and
``(3) such other items as the Secretary determines
appropriate.
``(e) Advisory Council.--
``(1) In general.--The Secretary shall establish and
maintain an Advisory Council on Parkinson's Research, Care,
and Services (referred to in this section as the `Advisory
Council') to advise the Secretary on Parkinson's-related
issues.
``(2) Membership.--
``(A) Federal members.--The Advisory Council shall be
comprised of experts, to be appointed by the Secretary, who
collectively are from various backgrounds and perspectives,
including at least one member from each of--
``(i) the Centers for Disease Control and Prevention;
``(ii) the Administration on Community Living;
``(iii) the Centers for Medicare & Medicaid Services;
``(iv) the National Institutes of Health;
``(v) the Agency for Healthcare Research and Quality;
``(vi) the Department of Veterans Affairs;
``(vii) the Food and Drug Administration;
``(viii) the National Science Foundation;
``(ix) the Department of Defense;
``(x) the Environmental Protection Agency;
``(xi) the Office of Minority Health;
``(xii) the Indian Health Service;
``(xiii) the Office of the Surgeon General of the Public
Health Service; and
``(xiv) other relevant Federal departments and agencies as
determined by the Secretary.
``(B) Non-federal members.--In addition to the members
listed in subparagraph (A), the Advisory Council shall
include 10 expert members, to be appointed by the Secretary,
who shall include representatives of minority communities,
communities disproportionately affected by Parkinson's, and
communities underrepresented in Parkinson's research, who
shall each be from outside the Federal Government, and who
shall include--
``(i) 2 Parkinson's patient advocates, at least 1 of whom
is living with young-onset Parkinson's;
``(ii) 1 Parkinson's family caregiver;
``(iii) 1 health care provider;
``(iv) 2 biomedical researchers with Parkinson's-related
expertise in basic, translational, clinical, or drug
development science;
``(v) 1 movement disorder specialist who treats Parkinson's
patients;
``(vi) 1 dementia specialist who treats Parkinson's
patients; and
``(vii) 2 representatives from nonprofit organizations that
have demonstrated experience in Parkinson's-related research
or Parkinson's-related patient care and other services.
``(C) Representation.--The Secretary shall ensure that the
members of the Advisory Council are collectively
representative of agencies, professions, individuals, and
entities concerned with, or affected by, activities under
this section.
``(3) Meetings.--
``(A) Frequency.--The Advisory Council shall meet--
``(i) at least once each quarter during the 2-year period
beginning on the date on which the Advisory Council is
established; and
``(ii) at the Secretary's discretion after such period.
``(B) Annual research meeting.--Not later than 24 months
after the date of enactment of this section, and every year
thereafter, the Advisory Council shall convene a meeting of
Federal and non-Federal organizations to discuss Parkinson's
research.
``(C) Open meetings.--The meetings under subparagraphs (A)
and (B) shall be open to the public.
``(4) Annual report.--Not later than 18 months after the
date of enactment of this section, and every year thereafter,
the Advisory Council shall provide to the Secretary and
Congress a report containing--
``(A) a list of all federally-funded efforts in Parkinson's
research, prevention, diagnosis, treatment, clinical care,
and institutional-, home-, and community-based programs and
the outcomes of such efforts;
``(B) recommendations for priority actions to expand,
eliminate, coordinate, refocus, streamline, or condense
Federal programs based on each program's performance,
mission, scope, and purpose;
``(C) recommendations to--
``(i) reduce the financial impact of Parkinson's on
families living with Parkinson's;
``(ii) improve health outcomes for, and the quality of life
of, individuals living with Parkinson's;
``(iii) prevent Parkinson's, ameliorate symptoms, and slow
or stop progression;
``(iv) improve the quality of care provided to
beneficiaries with Parkinson's who receive coverage through a
federally-funded health care program, such as the Medicare
program under title XVIII of the Social Security Act or the
Medicaid program under title XIX of such Act;
``(v) research the association between environmental
triggers and Parkinson's to help reduce exposure to potential
triggers; and
``(vi) research and better understand the underlying
factors contributing to Parkinson's;
``(D) priority actions to improve all federally-funded
efforts in Parkinson's research, prevention, diagnosis,
treatment, clinical care, and institutional-, home-, and
community-based programs;
``(E) an evaluation of the implementation, including
outcomes, of the national plan under subsection (c)(1); and
``(F) implementation steps to address the recommendations
and priority actions under subparagraphs (B), (C), and (D),
based in part on the evaluation under subparagraph (E).
``(5) Termination.--The Advisory Council shall terminate at
the end of calendar year 2035.
``(f) Information Sharing.--Each Federal department and
agency that has information relating to Parkinson's shall
share such information with the Secretary consistent with the
statutory obligations of such department or agency regarding
disclosure of information, as necessary to enable the
Secretary to complete a report under subsection (e)(4).
``(g) Sunset.--The section shall cease to be effective at
the end of calendar year 2035.''.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from
Florida (Mr. Bilirakis) and the gentleman from New York (Mr. Tonko)
each will control 20 minutes.
The Chair recognizes the gentleman from Florida.
General Leave
Mr. BILIRAKIS. 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 Florida?
There was no objection.
Mr. BILIRAKIS. Mr. Speaker, I yield myself such time as I may
consume.
Mr. Speaker, I rise today in support of my bill, H.R. 2365, the newly
titled Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National
Plan to End Parkinson's Act, and I urge my colleagues to support this
legislation.
First, I thank Chair Rodgers for her support of this bill and passing
it out of markup last week unanimously by a vote of 47-0. I am also
grateful to my good friend and co-lead on this bill, Representative
Paul Tonko, for his support and for working with me on this particular
piece of legislation.
Mr. Tonko has been a true partner in this effort to provide hope for
patients living with Parkinson's disease, and I commend him for his
advocacy on behalf of the community.
Mr. Speaker, in that spirit, The Michael J. Fox Foundation has been a
champion for this mission to fund research for better treatments and
cures for over 23 years. Michael J. Fox has been able to use his own
diagnosis and celebrity status to channel over $1 billion to
translational research.
We have a letter of endorsement from his foundation and 30 other
Parkinson's and neurological advocacy groups and organizations. I truly
could not thank them enough for their support and grassroots efforts on
this particular bill.
H.R. 2365 is no-cost legislation--I want to repeat, no-cost
legislation--that will unite experts from government and the private
sector to develop a national Parkinson's project with the goal of
preventing, treating, and ultimately curing Parkinson's disease.
Parkinson's affects almost 1 million Americans nationwide, and it is
the fastest growing neurological disease with no cure available,
unfortunately.
It costs our healthcare system over $52 billion annually, and that
number is projected to increase over the next decade to $80 billion. We
must do all we can to change that trajectory.
Sadly, many of my close family members are among those who have been
diagnosed with this horrific disease. This year, in particular, has
been very difficult for my family. I lost my brother, Dr. Emmanuel
Bilirakis, to Parkinson's disease in May. As a primary care physician,
my brother cared for his community and his family. He really did.
I am so thankful that my friend and colleague, Anna Eshoo--she is a
godsend--suggested we rename the title of the bill after him in his
honor. I thank her for her strong support on this bill.
My brother was an outstanding individual. In my opinion, he was a
saint. May his memory be eternal.
Further, my mother-in-law, Theodora Lialios, also passed away just
this past October after her yearslong battle with the disease. She was
a strong and wonderful woman.
My uncle also had a diagnosis and passed away a few years ago.
My father, Congressman Mike Bilirakis, who was chairman of the Health
Subcommittee under the Energy and
[[Page H6918]]
Commerce Committee--Peter worked with him--was diagnosed just recently.
This is for my dad and all of my constituents.
Given these personal connections, I have made it a mission to enact
legislation that will help Parkinson's patients around the country.
H.R. 2365 is the first step in that direction.
Thankfully, we have been able to come together in a bipartisan
fashion to move this bill forward. I am hopeful we will get broad,
bipartisan support in the House today.
Mr. Speaker, this could also not come at a more critical time.
Earlier this year, researchers were able to newly discover a
Parkinson's biomarker that will help reveal pathologies and provide
better understanding in research and development efforts.
I truly believe we are on the brink of new breakthroughs for
treatments and cures and that one day we will completely eradicate this
dreadful disease.
We must be proactive. We cannot afford to wait any longer. This
national Parkinson's project will provide an integrated strategy to
support and coordinate research efforts, collaborate to prevent
duplication, encourage development of safe and effective treatments,
and review the impact on patients and their caregivers and families.
Mr. Speaker, with passage of this bill, HHS will be tasked with the
creation of a new advisory council comprising of experts in the field
across the Federal Government in every related agency, combined with
non-Federal members. This is how you do it, a public and private
partnership. There will be non-Federal appointed members represented by
the patient advocates, specialist providers, clinicians, and
researchers working in the Parkinson's space.
This advisory council will focus its efforts on an annual report to
the Secretary and to Congress with an evaluation of the current efforts
to prevent, treat, and cure Parkinson's once and for all.
It will also provide recommendations for ways to reduce the
escalating burden of this disease on patients, families, and
caregivers. It will provide recommendations on ways to reduce costs and
improve health outcomes and quality of care for Medicare and Medicaid
beneficiaries and our Nation's true American heroes, our veterans, and
better research the underlying causes of this terrible disease.
Lastly, H.R. 2365 will incorporate other neurodegenerative
Parkinson's-related diseases, including the rare disease, progressive
supranuclear palsy, PSP. PSP is an extremely aggressive disease that
progresses rapidly, with life expectancy of 6 to 9 years after
diagnosis. It has no known cure or cause. Like Parkinson's, we can
change that if we act now.
Mr. Speaker, I was so saddened to learn that our friend and House
colleague, Jennifer Wexton, was diagnosed with PSP. Our thoughts and
prayers are with her and her family. Her bravery is to be commended for
continuing in Congress on behalf of her constituents while battling
this horrific disease.
Mr. Speaker, I thank Representative Wexton for her bipartisan
support. She did so much. I couldn't do this without her. We are
absolutely honored to be able to add her name to the title of this
legislation, as well.
In the end, there has never been a better time to move forward with
H.R. 2365, the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton
National Plan to End Parkinson's Act.
Mr. Speaker, I thank my good friend, Majority Leader Steve Scalise,
for helping put this bill on the suspension calendar this week. We
really appreciate accelerating the process.
It is a no-brainer. We have to cure this disease as soon as possible.
We need to save lives, and quality of life is so very important, as
well.
Let's do the right thing for the Parkinson's community by getting
this bill through the House floor to the Senate and enacted into law as
soon as possible.
Mr. Speaker, I urge my colleagues to support H.R. 2365, and I reserve
the balance of my time.
Mr. TONKO. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, I rise today in support of the Dr. Emmanuel Bilirakis
and Honorable Jennifer Wexton National Plan to End Parkinson's Act.
These past few years, I have been honored to champion this
legislation on behalf of the more than 1 million Americans living with
Parkinson's.
I first learned more in-depth about Parkinson's from a friend who
suffered with the disease. When the opportunity arose to partner with
Congressman Bilirakis on this meaningful effort, I jumped right in and
made it my personal mission to get this done on behalf of the millions
of people living with Parkinson's.
Mr. Speaker, currently, there are no treatments to cure, prevent, or
significantly slow down its progression. Parkinson's is the second most
common neurological disease and is, unfortunately, growing and growing
fast.
Mr. Speaker, I will highlight that there is hope on the horizon.
Earlier this year, researchers discovered a new biomarker for
Parkinson's disease. This is an exciting step forward, but much more
research and coordination is needed.
Our bipartisan, no-cost legislation will, for the first time, unite
our Federal Government in a mission to cure and prevent Parkinson's,
alleviate financial and health burdens on American families, and reduce
government spending over time.
This pioneering legislation is greatly needed. This bill will bring
Federal stakeholders and non-Federal experts together to implement a
national plan to prevent and cure the disease, improve diagnosis and
treatment options, and lessen the burden for caregivers and their
families.
{time} 1615
The bill's text is modeled off the successful National Alzheimer's
Project model which brought together many parts of our Federal
Government to improve the Federal response.
Once signed into law, this bill will do for Parkinson's what the
national plan did for Alzheimer's and bring together coordination,
care, and research all to help those with Parkinson's, as well their
loved ones.
This will help bring a strong focus on a cure, a treatment, and also
prevention. It will shine a needed light on the suffering related to
Parkinson's.
Sadly, we recognize that environmental triggers are likely a part of
Parkinson's, but so much is still unknown. More research and more
coordination are critical to getting answers to these questions.
I thank The Michael J. Fox Foundation for everything that it does,
but especially all of the work that they provided on behalf of this
bill.
I thank the New York-based groups and advocates who stood by my side
demanding action on this bill and giving a face to Parkinson's. That
mission and their journey was over a series of years.
Together with patients, with families, and with medical professionals
we learned about the challenges of Parkinson's and why this bill is so
desperately and urgently needed.
I thank my good friend, Gus Bilirakis, for working on the National
Plan to End Parkinson's Act with me. It is an honor to work with the
gentleman on this, and I know how much this means to him personally. I
thank him for his relentless work to push this forward. The loss of his
brother and mother-in-law in this last year, indeed, has been a
devastating blow for their family. I admire how my friend has channeled
that pain and committed to making a difference so that we can bring
hope to those with Parkinson's.
I thank Chair Rodgers and Representative Pallone for staying with us
and finding the resolution to move this meaningful bill forward. I
thank Congressman Guthrie and Congresswoman Eshoo for their support, as
well.
Additionally, I thank our committee staff for their hard work on
bringing this together. Special thanks go to Tiffany Guarascio, Una
Lee, Waverly Gordon, Shana Beavin, and Jacquelyn Bolen for all of their
efforts.
From my personal office, I thank Emily Silverberg, our legislative
director, for the resolve to continue until we pass that finish line.
I thank Congressman Bilirakis' team, especially Chris Jones, for her
hard work on this effort.
I also thank our good friend, Congresswoman Jennifer Wexton. We love
[[Page H6919]]
Jennifer. She has been there. She has faced a devastating diagnosis,
and she not only joined this fight but became one of the most vocal
advocates fighting for the Parkinson's community.
Mr. Speaker, as many of us know, Congresswoman Wexton was first
diagnosed with PSP this year which she describes as a kind of
Parkinson's on steroids.
Today and every day, Jennifer gives a face to Parkinson's, and she is
changing the future for those who have not yet received the diagnosis
and those who will benefit from the National Plan to End Parkinson's. I
thank my friend for her advocacy and for bravely sharing publicly about
her journey. I value her friendship and am in awe of her determination
and her journey. I understand that receiving a Parkinson's diagnosis
has got to be truly devastating for individuals and their loved ones.
It is, indeed, incumbent upon Congress to ensure Americans know they
will be supported during this frightening and life-altering time. Our
legislation does just that and offers a dose of hope.
This is a commonsense, compassionate bill that will establish a
robust response to address Parkinson's and ensure that patients and
their families receive the care that they need and deserve. By moving
this forward, we will make a positive difference, improve lives, and
even save lives.
For the millions of Americans living with Parkinson's, as well as
their loved ones, I hope this brings much-needed hope. Hope has finally
arrived. Hope is on the way, and that has been the message of this
whole effort.
To all my colleagues, I thank them for their strong support and
commitment to the Parkinson's community. I urge my colleagues to
support this meaningful bill. It will make a difference totally to
those who are impacted and to the Nation.
Mr. Speaker, I reserve the balance of my time.
Mr. BILIRAKIS. Mr. Speaker, I yield 2 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 H.R. 2365, the Dr.
Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End
Parkinson's Act.
Mr. Speaker, I congratulate my dear friend from Florida,
Representative Gus Bilirakis, for his leadership and his excellent work
on this bipartisan piece of legislation. We all admire my friend, and
we thank him for his courage.
This is the first-ever legislation in Congress focusing on curing and
preventing Parkinson's disease and ensuring quality care for those
living with the disease.
More than 1 million people in the U.S. live with Parkinson's disease,
and there are no treatments to cure, prevent, or significantly slow
down the progression.
Mr. Speaker, whether you are living with the disease or caring for
someone, Parkinson's takes a terrible toll on everyone involved.
This issue is also very important to me. As a pharmacist, I have,
through my career, experienced this with many patients. I also watched
my dear friend, Senator Johnny Isakson, courageously battle Parkinson's
disease for over 6 years.
Fortunately, we have an opportunity here today to pass one of the
single largest congressional efforts to address Parkinson's disease.
The National Plan to End Parkinson's Act will build on the great work
being done at places like the Isakson Center, named after Senator
Isakson, to end Parkinson's once and for all.
Mr. Speaker, I urge my colleagues to do what is best for patients and
for the Parkinson's community by getting this bill passed.
Mr. TONKO. Mr. Speaker, I yield 2 minutes to the gentlewoman from
California (Ms. Barragan), who is an active member on our Energy and
Commerce Committee and a very strong supporter of this legislation.
Ms. BARRAGAN. Mr. Speaker, I thank Representative Tonko for his
leadership.
Mr. Speaker, I rise in support of the Dr. Emmanuel Bilirakis and
Honorable Jennifer Wexton National Plan to End Parkinson's Act.
More than 1 million people in the U.S. live with Parkinson's disease.
Without a cure, this number will only continue to grow. Every 6
minutes, someone is diagnosed with Parkinson's, and their life changes
forever.
This diagnosis is devastating to patients and their loved ones who
deal with the physical, emotional, and financial toll of this disease.
I know this and its impacts firsthand. As a teenager, I watched my
father battle Parkinson's for the last 10 years of his life.
I also recognize and thank our colleague, Jennifer Wexton, who
earlier this year shared that she was diagnosed with a form of atypical
parkinsonism, PSP, and she has shared her story and has been an
advocate to make sure that the bill got to where it is today.
The National Plan to End Parkinson's Act, the first-ever legislation
solely dedicated to ending Parkinson's disease, is sorely needed.
This bill directs the Secretary of Health and Human Services to lead
a national project to prevent and cure Parkinson's. Our fight against
this heartbreaking disease is nowhere near done, but we have the tools
to start.
Mr. Speaker, I urge my colleagues to vote ``yes'' and to support this
bill.
Mr. BILIRAKIS. Mr. Speaker, I yield 3 minutes to the gentleman from
Idaho (Mr. Fulcher).
Mr. FULCHER. Mr. Speaker, I thank my friend from Florida for
yielding.
Mr. Speaker, I stand before you today to express my support for the
National Plan to End Parkinson's Act, which addresses one of the most
pressing health challenges of our time, Parkinson's disease. It is a
debilitating brain disorder that disrupts the lives and families across
our Nation, including those in my immediate family, as well.
H.R. 2365 puts forth a much-needed proactive approach, mandating
Health and Human Services to formulate and regularly update a national
plan coordinating efforts to not only prevent and slow the progression
of Parkinson's but to ultimately find a cure.
This bill will help lift up hope for loved ones and caregivers
impacted by the disease by enhancing the diagnosis, treatment, and care
provided to those affected by Parkinson's.
As previously mentioned, this includes supporting research for a new
biomarker researchers recently discovered that can provide intelligence
on the presence of an abnormal protein in the brain and body that is a
known indicator of Parkinson's disease.
If researchers can find these types of biomarkers in the brain and
body, then doctors can better detect who has the disease or may be at a
high risk of developing it, and that can lead to an earlier diagnosis
and more effective treatment.
Many people across the Nation have had to deal with the emotional and
financial challenges that come with taking care of a loved one stricken
with this cruel disease.
This legislation comes at an imperative time. According to the
Parkinson's Foundation, nearly 90,000 people in the U.S. are diagnosed
with Parkinson's disease every year. That is nearly a 50 percent
increase over previous years. Today, nearly 1 million people in the
U.S. are living with the dreaded disease, and that is projected to grow
to 1.2 million by the end of this decade.
The cost to families is devastating when it comes to medications,
surgeries, and other treatments. There are nearly $52 billion per year
in costs and lost income in the U.S.
Mr. Speaker, this is a cruel disease. My grandfather, Finley; my
father, Gale; and my brother, Scott, have fallen prey to this disease,
but there is hope.
Mr. Speaker, I urge my colleagues to join forces in passing this
bill. Together, we can pave the way for a future where Parkinson's
disease is not a sentence but a condition we have conquered through our
shared dedication to the health and well-being of the American people.
This bill would not be possible without Representative Wexton. So I
will close by saying to my friend and colleague: There is hope. This
disease may touch my friend physically, but it can never touch her
soul. May God bless my friend.
Mr. BILIRAKIS. Mr. Speaker, we will find a cure.
Mr. Speaker, I reserve the balance of my time.
[[Page H6920]]
Mr. TONKO. Mr. Speaker, I yield such time as she may consume to the
gentlewoman from the Commonwealth of Virginia (Ms. McClellan), who is a
great supporter of this legislation.
Ms. McCLELLAN. Mr. Speaker, I rise today on behalf of my friend and
colleague, Congresswoman Jennifer Wexton, to share her strong support
and statement regarding this important legislation.
These are her words:
``I rise today in strong support of the National Plan to End
Parkinson's Act.
``As many of you know, earlier this year, I shared that I have been
diagnosed with progressive supranuclear palsy, or PSP for short, which
is an atypical Parkinson's, a kind of Parkinson's on steroids.
``Even those of you with whom I have never interacted one on one have
witnessed my physical deterioration, from my striding confidently
through the Chamber earlier this year to walking more haltingly and
dependent on my walking sticks this summer, to leaning heavily on my
walker now. In all likelihood, some time in 2024, I will come to the
floor in a wheelchair.
``Eventually, those of us who have these diseases will be unable to
walk, talk, or even feed ourselves. We will require extensive and
expensive institutional or in-home care, the cost of which will likely
be borne primarily by U.S. taxpayers.
``Since my diagnosis, I have seen firsthand how Parkinson's disease
or atypical Parkinson's can change everything, not only for those of us
who suffer from the disease itself, but for all of the many people in
our lives who love us and want us to be well again.
``The physical challenges are tough. In just 2016, I ran the Marine
Corps Olympic-distance triathlon and as recently as last year got up
every morning during session to go to the gym with Chair Rodgers and a
small group of dedicated women Members.
``My family has felt the impacts, as well. My husband, Andrew, and I
were supposed to be getting to the good part and were looking forward
to enjoying our empty nest as our younger son went off to join his
brother in college.
``Instead, he will be a caregiver, and we are looking for ways to
convert the first floor study and half bath to a bedroom and en suite
so that I will be able to remain in our home when I am no longer able
to make it up or down stairs.
``Instead of scuba diving together in the morning and sitting under a
palm tree and playing Scrabble in the afternoon, we will not enjoy a
leisurely retirement a decade plus from now.''
{time} 1630
``I know it has been difficult for my sons to watch as their
vivacious, cool--for a mom--confident Congresswoman mom goes through
these changes and challenges as well.
``This is my family's story, but we, unfortunately, are not alone.
There are over 1 million people in the United States who have these
diseases, and countless loved ones surrounding them.
``We did not expect this to happen to us, and it could happen to
anyone. That is why this legislation is so critical. Today marks a
historic step forward toward a world where no family has to endure what
ours has.
``To my colleagues, friends, and those from across the country from
whom I have heard an outpouring of support, I have been touched by your
kindness and the desire for action from both sides of the aisle.
``If there is one thing we can all agree on, it is that we can and
must do better to fight these terrible diseases.
``The past year has been a difficult road and an emotional journey
for me, not only facing the great health challenges that come with this
diagnosis, but also coming to terms with the fact that I have to give
up doing what I love.
``I have spent my career uplifting the stories of those in need and
fighting to serve my community, and I am proud to continue that fight
on behalf of the broader Parkinson's community for as long as I am
able.
``I am grateful to have a platform to be a voice for those struggling
with this disease and to fight and help bring greater resources to the
search for a cure. The National Plan to End Parkinson's Act will do
just that.
``This is not the end of the road, but a vital and necessary first
step on a journey that will lead to a cure or, even better, eradicate
Parkinson's and atypical Parkinson's altogether.
``I urge my colleagues to support this important legislation and
reaffirm Congress' commitment to finding treatments and cures for
millions of families across the country.''
Mr. Speaker, I would only add to the words of Congresswoman Jennifer
Wexton that she is a fighter.
Having served with her in the Virginia General Assembly, I saw her
fight on behalf of others and turn their pain into progress, and now I
am honored to serve with her as she does that with her own pain, turns
it into progress to fight for those who cannot fight for themselves. I
join her in supporting this bill and asking our colleagues to vote
``yes.''
Mr. BILIRAKIS. Mr. Speaker, I have no further speakers, and I reserve
the balance of my time.
Mr. TONKO. Mr. Speaker, I yield 2 minutes to the gentlewoman from
Texas (Mrs. Fletcher).
Mrs. FLETCHER. Mr. Speaker, I rise today in support of the Dr.
Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End
Parkinson's Act, H.R. 2365.
This bill takes a major step toward preventing and curing Parkinson's
and diseases like it, diseases that impact millions of Americans,
including more than 67,000 people in my home State of Texas.
Mr. Speaker, I thank Congressman Tonko and Congressman Bilirakis for
introducing this transformative legislation, which I am proud to
cosponsor. I also thank the Houston Area Parkinson Society for the
advocacy and the important and meaningful work that they do for those
living with Parkinson's in Texas' Seventh Congressional District and
throughout the greater Houston area.
I thank my friend and colleague, Congresswoman Jennifer Wexton of
Virginia, for her leadership, for her grace, and for her inspiring
example. As her classmate in the Congress in the class of 2018 and
fellow William and Mary Law School alum, I have admired Jennifer since
the day that I met her.
Today, we honor her by naming this legislation for her in recognition
of the work that she has done to advance this landmark legislation that
will change the lives of millions of individuals and families affected
by Parkinson's and diseases like it for decades to come, but it is
Jennifer who honors all of us, who honors our Constitution and our
country and our fellow citizens by her service and by her example of
courage and commitment and citizenship.
Mr. BILIRAKIS. Mr. Speaker, I reserve the balance of my time.
Mr. TONKO. Mr. Speaker, this is a very emotional journey, and in the
words of Jennifer Wexton, this could happen to anyone, so any one of us
could be touched by the impact of this legislation that will deliver
efforts to search for better diagnoses, sounder treatment, and
ultimately find a cure, but it is also about hope, and hope rings
eternally here with this effort so that folks like Jennifer will know
and folks from Gus Bilirakis' family will know that America cares, that
she cares deeply.
Mr. Speaker, I yield back the balance of my time.
Mr. BILIRAKIS. Mr. Speaker, I yield myself the balance of my time for
the purpose of closing.
Mr. Speaker, first of all, the reason the Lord brought us here today
was to do good things, and that is why our constituents elect us--to do
good things and work together for our constituents and, of course, for
our wonderful country.
I thank Jennifer Wexton, my colleague, for really helping me with
this. We could not have done this without our bipartisan support, and I
appreciate the gentlewoman (Ms. Wexton) so very much.
I want to thank my staff and the committee staff for not giving up
and being resilient in getting this done in a timely fashion. We urge
the Senate to do the same.
I want to also salute some family members: my sister-in-law, Maria,
who took care of my brother Emmanuel for so many years. He took care of
everyone in our community really as an old-fashioned family doctor and
called patients every night to make sure that they were okay. He
worried about us on a regular basis, the family, and never really cared
about himself. God bless
[[Page H6921]]
him for what he has done for our community and, again, for this bill.
I also thank my nieces, Evelyn and Stella; and my lovely, wonderful
wife for taking care of my mother-in-law for so many years.
This is quite an accomplishment. Again, we couldn't do it without
Representative Tonko, Representative Anna Eshoo, Ranking Member Pallone
and, of course, Chair Cathy McMorris Rodgers, who has been wonderful.
Mr. Speaker, I urge unanimous support for this wonderful bill that
will do so much. I thank Michael J. Fox for his help. He has done so
much. We will find a cure. I encourage a ``yes'' vote on this
particular vote, and I yield back the balance of my time.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from Florida (Mr. Bilirakis) that the House suspend the rules
and pass the bill, H.R. 2365, as amended.
The question was taken.
The SPEAKER pro tempore. In the opinion of the Chair, two-thirds
being in the affirmative, the ayes have it.
Mr. BILIRAKIS. Mr. Speaker, on that I demand the yeas and nays.
The yeas and nays were ordered.
The SPEAKER pro tempore. Pursuant to clause 8 of rule XX, further
proceedings on this motion will be postponed.
____________________