National Plan to End Parkinson’s Act Signed into U.S. Law with Historic Global Significance
In July 2024, the United States (U.S.) committed to developing a first-ever countrywide strategy to finding a cure for Parkinson’s disease as President Biden signed The National Plan to End Parkinson’s Act into law.
President Biden signs the National Plan to End Parkinson’s Act into law. Photo courtesy of the Biden administration.
There are more than 1 million people living with Parkinson’s disease (PD) in the U.S., which costs the U.S. a staggering $52 billion per year, a number that is expected to reach $80 billion by 2037. The bipartisan National Plan to End Parkinson’s Act is the first-ever U.S. federal legislation dedicated to supporting the Parkinson’s and atypical parkinsonims communities by better diagnosing, treating, preventing and curing the disease. Signing this bill into law is not only a historic moment in the U.S., but it also holds global significance for the future of PD funding and research.
The legislation directs the U.S. Department of Health and Human Services (HHS) to develop and maintain an integrated national plan to end Parkinson’s, treat its symptoms and slow or stop its progression. This plan — which will be known as the National Parkinson’s Project — was modeled after the National Alzheimer’s Project Act (NAPA) which was signed into law in 2011. The U.S. federal government now invests $3.8 billion in Alzheimer’s and dementia research annually, a seven-fold increase since NAPA became law. And in that time, next-generation treatments for Alzheimer’s have arrived, bringing functional benefit to those living with the devastating disease.
The creation of the National Parkinson’s Project in the U.S. paves the way for an international movement that could propel Parkinson’s public policy forward and lead to better treatments and speed the global search for cures. According to the bill language, the Project will include coordination with international bodies, “to the degree possible to integrate and inform the global mission to prevent and cure Parkinson’s, ameliorate its symptoms, and slow or stop its progression.”
“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,” said Michael J. Fox, actor, advocate and founder of the Michael J. Fox Foundation for Parkinson’s Research (MJFF). “Today, I’m endlessly thankful to everyone who has carried the load to get us here — advocates, scientists, patients, families, clinicians, caregivers and legislators, especially the bill’s lead sponsors in Congress. A National Plan to End Parkinson’s is a historic opportunity to accelerate our search for cures, and now is the time.”
Notably, the legislation also directs HHS to bring together a national advisory council for Parkinson’s, uniting public and private sector experts including members of federal government agencies, people living with Parkinson’s, caregivers, researchers, clinicians and other experts. The council will evaluate the implementation and outcomes of the National Parkinson’s Project, advise the U.S. Secretary of HHS on Parkinson’s-related issues and provide recommendations for preventing, diagnosing, treating and curing Parkinson’s disease.
“The U.S. has taken a substantial step forward in opening the door for international collaboration to eliminate the second most common and fastest growing neurological disease in the world,” said Ted Thompson, senior vice president of public policy at MJFF. “The National Plan to End Parkinson’s Act can serve as an example for other countries by providing a framework and roadmap for similar efforts aiming to better diagnose, treat, prevent and cure Parkinson’s.”
The U.S. is not the only country advancing Parkinson’s research on a national scale. Shake It Up Australia and the National Parkinson’s Alliance recently announced $800,000 in federal funding over two years to develop and implement Australia’s first National Parkinson’s Action Plan. The plan will include greater funding for research, prevention of Parkinson’s, better data on Parkinson’s prevalence, earlier detection and diagnosis of Parkinson’s and more.
Several European countries have also expressed interest in similar efforts. “We at Parkinson’s Ireland feel that at EU level, a similar plan should be adopted to end Parkinson’s. Such an act would create measurable objectives and would in turn be another way to hold key decision makers to account,” said Shane O’Brien, CEO of Parkinson’s Ireland in a conversation with Parkinson’s Europe. “We have witnessed the benefits of the UN Convention on the Rights of Persons with Disabilities. We have seen from the COVID pandemic, the impact that international cooperation can have on complex health issues. The Parkinson’s community across Europe deserves a renewed focus on improved treatments and the search for a cure.”
The U.S. Parkinson’s community and The Michael J. Fox Foundation look forward to these continued, cooperative efforts. "When we’re able to join forces and share vital resources globally, we set an exceptional precedent for international collaboration that could lead to critical breakthroughs and discoveries for the global PD community and transform the future of brain science altogether,” said Thompson.
The Michael J. Fox Foundation is a Champion Partner of the World Parkinson Coalition®. They have been supporting the Coalition since inception in 2004. Follow them to learn more about their work on policy and research on Instagram, Facebook and LinkedIn. For questions about advocating for Parkinson’s policies, please email policy@michaeljfox.org.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not reflect the opinions or positions of the World Parkinson Coalition®