The Department of Health and Human Services will form a federal advisory council that will provide recommendations for making progress against Parkinson’s disease, as well as implement a national plan to address the disease, under bipartisan legislation signed into law July 2 by President Joe Biden.

The Michael J. Fox Foundation for Parkinson’s Research said the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act is “the first-ever federal legislation dedicated to ending Parkinson’s” and called its passage “a historic step forward in search of improved treatments, and ultimately, a cure for every patient impacted by Parkinson’s and atypical parkinsonisms today and in the future.”

The bill, HR 2365/S 1064, had passed in the Senate in May and in the House of Representatives in December. It had been introduced in the Senate by Sens. Shelley Moore Capito (R-VA) and Chris Murphy (D-CT) and in the House by Reps. Gus Bilirakis (R-FL) and Paul Tonko (D-NY) in 2023 after having been introduced previously, in 2022, as the National Plan to End Parkinson’s Act. The legislation had 42 co-sponsors in the Senate in addition to Murphy and 171 co-sponsors in the House in addition to Tonko.

“Now that this legislation is officially law, the federal government can unite around our mission of ending this disease and establish a responsible plan that increases diagnosis and treatment and supports research efforts already underway,” Capito said in a statement.

That plan will take the form of the National Parkinson’s Project, “a first-ever federal initiative to prevent and cure Parkinson’s disease, treat its symptoms and slow or stop its progression,” according to the Fox Foundation.

Additionally, the bill’s sponsors said, a federal advisory council consisting of members of federal agencies that support research, care and services for Parkinson’s, plus patients, family caregivers, patient advocates, clinicians, researchers and other non-federal experts, will:

Ensure coordination among federal entities that have responsibility for managing, treating and curing Parkinson’s;

Evaluate all current federal programs related to Parkinson’s;

Recommend how to improve care quality for Medicare and Medicaid beneficiaries as well as veterans living with the disease;

Write and periodically update a national plan to prevent and cure Parkinson’s and reduce the financial effects of the disease on patients and the federal government; and

Report annually to HHS and Congress on progress toward the plan’s goals.

Bilirakis and Tonko, in a press release, said that the 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.”

They noted that Parkinson’s is the second most common — and fastest-growing — neurological disease globally and that almost 90,000 new cases are diagnosed in the United States every year. Approximately one million people are living with Parkinson’s in the United States, and 25% of them reside in long-term care settings such as assisted living communities and nursing homes, according to the Fox Foundation.

In the United States, direct and indirect costs to care for those with the disease total $52 billion annually, according to the foundation. The federal government covers about half of that cost, and the rest is covered by people living with Parkinson’s and their families and caregivers.

“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,” Ted Thompson, senior vice president of policy for the Fox Foundation, said in a news release from Bilirakis.

The bill was modeled after the National Alzheimer’s Project Act, signed into law in 2011 and now up for reauthorization. “NAPA has paved the way for improved therapies and greater access to quality care for patients, and the federal government now invests $3.8 billion in Alzheimer’s and dementia research annually, a seven-fold increase since NAPA became law,” according to the Fox Foundation.

A national strategy to end Parkinson’s and atypical parkinsonisms, according to the foundation, has the potential to increase federal research funding; develop more effective pathways for treatments and cures; improve early diagnosis; spark new and improved models for patient care; create standards and measures to prevent Parkinson’s disease; address health disparities in diagnosis, treatment and clinical trial participation; and enhance public awareness of the disease. 

“The foundation stands ready to partner with our national leaders to bring the plan to life and make today’s generation of patients the last to live with Parkinson’s as we know it,” Michael J. Fox said in May when the act passed the Senate.

The National Plan to End Parkinson’s Act was named for the brother of Bilirakis, who passed away in May 2023 after having lived with Parkinson’s for many years, and for Rep. Wexton (D-VA), who has progressive supranuclear palsy, a Parkinson’s-related neurodegenerative disease that, along with multiple system atrophy, corticobasal degeneration and Lewy body disease, also will be addressed through the National Parkinson’s Project.

The provisions of the bill, as it was written, are scheduled to conclude at the end of calendar year 2035.