• New study is the most comprehensive assessment that illustrates the annual economic toll on people with Parkinson’s, their families and the United States government
• The Economic Burden of Parkinson’s Disease was conducted and published by The Michael J. Fox Foundation, with support from national organizations including Parkinson’s Foundation, American Parkinson Disease Association, and The Parkinson Alliance, as well as industry partners

NEW YORK (June 13, 2019) -- The Michael J. Fox Foundation for Parkinson’s Research (MJFF) announced today critical findings about the annual economic burden of Parkinson’s disease (PD) on families and the federal government. This new study provides the most comprehensive assessment of the total economic burden on patients, care partners, payers, employers, healthcare systems and government programs. For many years, the financial impact of the disease has been vastly underestimated.

The total cost of Parkinson’s disease to individuals, families and the United States government is $51.9 billion every year, with $25.4 billion attributable to direct medical costs (e.g., hospitalizations, medication) and $26.5 billion in non-medical costs like missed work, lost wages, early forced retirement and family caregiver time. This nearly doubles previous estimates and, for the first time, includes the various ways the disease affects a person’s finances and their ability to participate in the labor market.

“There are a lot of surprise costs when you have Parkinson’s,” said Steve DeWitte, a Parkinson’s research funding advocate from New Preston, Connecticut. “Beyond the rising costs of medications and healthcare, my family has shouldered the financial burden of my having to leave the workforce 15 years earlier than I had planned. That means our income dropped by more than half, and we’ve had to figure out how to stretch our budget to cover the everyday household tasks I can no longer physically do.”

The study also revealed that the federal government alone spends nearly $25 billion annually in caring for people with Parkinson’s. About $2 billion of that is shouldered by Social Security, and the remaining $23 billion is in Medicare costs since an estimated 90 percent of people with PD receive Medicare benefits.

“This data will help facilitate a new level of outcome-driven conversations with Members of Congress who oversee federal programs that affect the lives of the one million people with Parkinson’s in the United States,” said Todd Sherer, PhD, MJFF CEO. “Investing more in research toward better treatments and a cure will ultimately relieve the burden on already-strained programs like Medicare, Medicaid and Social Security.”

To conduct this study, multiple data sources were used to fully understand and analyze the cost components of Parkinson’s, including publicly available data from Medicare, the Centers for Disease Control and Prevention and the Census Bureau, as well as other survey tools. Having a data-driven understanding of how much Parkinson’s disease costs supports MJFF’s research mission to fund work toward better treatments to alleviate the urgent need today and the growing burden tomorrow.

“These results provide deep insight into the indirect costs — those costs the people living with Parkinson's and their families must shoulder alone,” added Parkinson’s Foundation Senior Vice President and Chief Scientific Officer James Beck, PhD. “Knowing this information will allow us to better serve people with Parkinson’s and their families in the areas they’re most concerned about and where we can have the most impact."

“The findings of this study underscore the burden of Parkinson’s in the U.S. and the potential impact of policy or treatment interventions,” added Sherer.

The study, The Economic Burden of Parkinson’s Disease, was conducted and published with support from Parkinson’s Foundation, AbbVie Inc., ACADIA Pharmaceuticals, Acorda Therapeutics, Adamas Pharmaceuticals, and Biogen Inc., along with American Parkinson Disease Association and The Parkinson Alliance.

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About The Michael J. Fox Foundation for Parkinson's Research
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding more than $800 million in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world.

For more information, visit michaeljfox.org.

Media Contact:
Allison Boiles
aboiles@michaeljfox.org
212-509-0995