National Plan to End Parkinson’s Act approved in US Congress

Bill, expected to bring more resources to the disease, set to be signed into law

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by Steve Bryson, PhD |

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An illustration for legislation approved by the U.S. Congress.

The U.S. Senate has joined the House of Representatives in approving The National Plan to End Parkinson’s Act, the first piece of federal legislation dedicated to ending Parkinson’s disease.

Celebrated by the Michael J. Fox Foundation for Parkinson’s Research (MJFF), the bill now will be sent to President Joseph Biden, who is expected to sign it into law.

“When we started the Foundation, we could only dream of the breakthroughs the Parkinson’s community has experienced over the last year, from the discovery of a biomarker to the federal government advancing a plan to end Parkinson’s,” Michael J. Fox said in a press release. “A National Plan to End Parkinson’s is a historic opportunity to accelerate our search for cures, and now is the time.”

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Act modeled on one supporting Alzheimer’s research and treatment

The proposed legislation (H.R.2365/S.1064) brings public and private sector specialists — Parkinson’s patients, their care partners, researchers, clinicians, and members of federal agencies — together in a federal advisory council. It is to regularly report on its progress to the U.S. Congress and the secretary of the Department of Health and Human Services.

It intends to work to increase federal research funding, create standards and measures to promote Parkinson’s prevention, improve ways of diagnosing the disease earlier, develop more effective pathways to Parkinson’s treatments, and find new or better patient care models. Addressing health disparities in diagnosis, treatment, and clinical trial participation, as well as enhancing public awareness of the disease, are other potential outcomes.

“Today, the Parkinson’s community has made history,” said Ted Thompson, MJFF’s senior vice president of public policy. “As we celebrate this moment, The Michael J. Fox Foundation expresses our gratitude to every grassroots advocate, partner organization and member of Congress who helped advance this bill.

“Signing this bill into law will ensure much-needed collaboration between the public and private sectors in the name of better treatments, earlier diagnosis and greater access to quality care,” Thompson said. “For every American living with Parkinson’s or an atypical parkinsonism, their families and caregivers, we look forward to continuing our work with policymakers to bring the National Plan to fruition.”

Senate Majority Leader Chuck Schumer announced the legislation’s passage there, and it cleared the House in December. The bill is modeled on the National Alzheimer’s Project Act, signed into law in 2011. Since then, the federal government has invested $3.8 billion in Alzheimer’s and dementia research, an increase of seven times in federal disease spending that, among other achievements, has improved access to quality care.

Fox added that the MJFF “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.”