National Plan to End Parkinson’s Act reintroduced

Legislation has bipartisan support on Capitol Hill

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by Mary Chapman |

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With bipartisan support, the National Plan to End Parkinson’s Act has been reintroduced in the U.S. House and Senate. The legislation aims to unite the federal government in a coordinated effort with the private sector to cure and prevent the neurodegenerative disease.

Said to be the first legislation devoted to ending Parkinson’s disease, the measure also seeks to mitigate the financial and health burden posed by Parkinson’s on U.S. families, while gradually reducing government spending on the disorder.

The legislation was introduced in the Senate by Chris Murphy, D-Conn., and Shelley Moore Capito, R-W.Va., and in the House by Reps. Gus Bilirakis, R-Fla., and Paul Tonko, D-N.Y.

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“Anyone living with Parkinson’s or caring for a loved one impacted by the disease understands the devastating toll it takes,” Murphy said in a press release. “We need a national plan to end Parkinson’s, and that requires serious collaboration across the public and private sector. This legislation would make sure the federal government is doing everything it can to find a cure and support patients and their families.”

Deborah W. Brooks, CEO and co-founder of the Michael J. Fox Foundation for Parkinson’s Research (MJFF), said, “The Parkinson’s research pipeline is bursting with possibility and hope. We’re learning more about Parkinson’s than ever before, and we know we’ll need the collaboration across sectors, including on Capitol Hill, to usher in a new generation of treatments and cures.”

The proposed plan is to be directed by the U.S. Secretary of Health and Human Services and calls for creating an advisory council comprised of federal agencies that support Parkinson’s research, care, and services. It also would include patients, caregivers, and other appointed nonfederal Parkinson’s experts.

Specifically, the council would seek to ensure coordination among federal entities involved with the management, treatment, and cure of Parkinson’s, and assess existing federal programs related to the disease.

The council would be charged with creating a national plan, which would run through 2035, to prevent and cure the disorder and lessen Parkinson’s financial impact on patients and the federal government. It also would be required to report the plan’s progress to Congress.

“Far too many West Virginians are impacted by Parkinson’s disease,” Capito said. “Whether they are living with the disease or caring for someone impacted by it, Parkinson’s takes a terrible toll on the physical, mental, emotional, and economic well-being of everyone involved,” she said. “The [act] is commonsense legislation which will establish a robust response to address the disease and move us towards new treatments and a cure.”

Costs expected to soar

Parkinson’s is thought to affect more than 1 million U.S. residents. As many as 90,000 people are diagnosed each year with Parkinson’s, which costs the U.S. $52 billion annually. By 2037, that yearly expenditure is expected to reach $80 billion. The federal government covers half the annual cost of Parkinson’s.

“This issue is very important to me as I’ve watched a close family member struggle with Parkinson’s,” Bilirakis said, adding that “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.”

The National Plan to End Parkinson’s Act was introduced originally in the House and Senate last year.

“Our Parkinson’s community of grassroots advocates and community partners across the United States who have rallied together toward a shared goal are grateful for the leadership of Senators Capito and Murphy and Representatives Bilirakis and Tonko in re-introducing the National Plan to End Parkinson’s Act,” MJFF’s Brooks said.

“This historic bill would foster collaboration between the public and private sectors toward better treatments and access to quality care that every person and family touched by this disease urgently needs,” she added.