Bilirakis and Tonko Celebrate Bipartisan Dr. Emmanuel Bilirakis National Plan to End Parkinson’s Act Moving One Step Closer to Becoming Law

U.S. Representatives Gus Bilirakis (R-FL.) and Paul Tonko (D-N.Y.) proudly announce that their National Plan to End Parkinson’s Act passed unanimously out of the Energy and Commerce Committee this week. This no-cost legislation will, for the first time, unite experts in a public-private partnership to advance a national project for the purpose of preventing, treating, and ultimately curing Parkinson’s disease once and for all.   It will address the financial and health burdens on American families and reduce government spending over time. Parkinson’s disease is the second most common – and fastest-growing – neurological disease globally with nearly 90,000 new cases diagnosed every year.  Getting this measure across the finish line this Congress is a priority for both co-authors of this bill, and they have worked tirelessly over the past few months to build consensus and garner their colleagues’ support.  Advancement of the legislation could not come at a more crucial time, since earlier this year researchers were able to discover a new biomarker that can reveal a key pathology and new understanding about this disease.  The pair of lawmakers are optimistic that their legislation will help spur new breakthrough developments of innovative treatments and cures.

For Congressman Bilirakis, this fight is extremely personal.  Sadly, he has lost two immediate family members to this disease, both in the last 6 months. His brother, Dr. Emmanuel Bilirakis, passed away in May after a long battle with the disease. Dr. Emmanuel Bilirakis was a wonderful human being and a primary care physician who gave so much back to his community.  Congressman Bilirakis is grateful to his friend and Ranking Member of the Health Subcommittee, Anna Eshoo, for amending the title of the bill in honor of Dr. Emmanuel Bilirakis. More recently, Congressman Bilirakis lost his mother-in-law in October, Theodora Lialios, who also battled this horrific disease for many years.  “I will continue this fight in memory of my dear brother, other family members, and on behalf of all my constituents who are still struggling with this debilitating disease,” said Congressman Bilirakis.  “It takes a terrible toll on the physical, emotional and economic well-being of everyone involved.  The lack of treatment options leave patients, families and the American taxpayers in a terrible quandary. We must change our approach to get better results, which is exactly what our legislation will do. It builds upon past success and strives to replicate other national project models that have helped advance health care goals. This critical legislation will provide hope to those who are suffering and hopefully lead to better patient outcomes with less expensive disease management.”

“In Congress, I have made helping those with neurological disorders one of my top priorities for more than a decade. I first learned about Parkinson’s from a friend who suffered with it. So 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. It is incumbent on Congress to ensure Americans know they will be supported during this frightening and life-altering time. Our legislation does just that. By moving this bill forward, we will make a positive difference, improve lives and even save lives. And for the millions of Americans living with Parkinson’s, as well as their loved ones, I hope this brings much needed hope, said Congressman Tonko.”

“On behalf of the 1 million people living with Parkinson’s disease in the United States, The Michael J. Fox Foundation is proud to support the National Plan to End Parkinson’s Act and offers deep gratitude to Representatives Bilirakis and Tonko for their leadership on this bill,” said Ted Thompson, Senior Vice President of Policy for The Michael J. Fox Foundation for Parkinson’s Research. “With groundbreaking progress made in Parkinson’s research this year — including the discovery of a biomarker — there is no better time to focus our efforts on accelerating science and providing better care to every patient and family impacted by this disease.”   

The newly named Dr. Emmanuel Bilirakis National Plan to End Parkinson’s Act also sets up an Advisory Council, comprised of experts from across the federal government in every related agency, combined with non-federal appointed members, represented by patient advocates, specialist providers, clinicians, and researchers, also ensuring representation of minority communities and other populations disproportionately affected by Parkinson’s.  This new entity will focus efforts on an annual report to the Department of Health and Human Services and to Congress with an evaluation of the current efforts to prevent, treat and cure Parkinson’s.  It will also provide annual recommendations for ways to reduce the escalating burden of this disease on patients and families, improve health outcomes and quality of care for Medicare and Medicaid beneficiaries and Veterans, and better research the underlying causes of this disease.   This national project will also incorporate other related neurodegenerative diseases, including the rare disease Progressive Supranuclear Palsy (PSP), which has afflicted Congresswoman Jennifer Wexton.  Congresswoman Wexton has been a strong supporter of this important legislation and integral in helping it move through the process.

 To view Congressman Bilirakis’s remarks during the Energy & Commerce Committee’s Mark-Up hearing, click here.