[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.

                          ____________________