Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson's Act
Floor Speech
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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 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.''.
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 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.
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Mr. BILIRAKIS. Mr. Speaker, we will find a cure.
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Mr. BILIRAKIS. Mr. Speaker, I have no further speakers, and I reserve the balance of my time.
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 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.
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Mr. BILIRAKIS. Mr. Speaker, on that I demand the yeas and nays.
The yeas and nays were ordered.
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