Editor's Note: The paper from this study was accepted and published in journal npj Parkinson's Disease on July 9, 2020.
More than one million Americans live with Parkinson’s disease (PD). Today, after the launch of a new study, we now have a fuller picture of what impact the disease has on a family’s income, as well as our national economy.
The Michael J. Fox Foundation (MJFF), with Parkinson’s Foundation, AbbVie Inc., ACADIA Pharmaceuticals, Acorda Therapeutics, Adamas Pharmaceuticals, and Biogen Inc., along with American Parkinson Disease Association and The Parkinson Alliance commissioned a new study -- The Economic Burden of Parkinson’s Disease -- to estimate the economic burden of Parkinson’s in the United States. This study provides the most comprehensive assessment of the total economic burden on patients, care partners, payers, employers, healthcare systems and government programs.
The total cost of Parkinson’s is $52 billion every year, with $25.4 billion attributable to direct medical costs such as hospitalizations and medication, and $26.5 billion in non-medical costs like missed work, lost wages, early forced retirement and family caregiver time. This is nearly double previous estimates and, for the first time, accounts for the many ways Parkinson’s affects a person’s finances and their ability to participate in the labor market.
“Beyond the rising costs of medications and healthcare, disease progression has led to some role reversals at home, and the need to secure outside services,” said Steve DeWitte, a Parkinson’s research funding advocate from New Preston, Connecticut. “The eventual decision to leave the workforce often requires a family meeting,” he added. “Family relations are strained and insecurities rise as the family adjusts to the latest symptoms and increased expenses against a fixed and shrinking income. And, not knowing what symptoms may come next makes it even harder to plan financially for the future.”
What impact does PD have on the federal government?
The study showed the government spends nearly $25 billion each year 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 nearly 90 percent of people with PD are on Medicare.
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 our research mission to fund work toward better treatments to alleviate the need today and the growing burden tomorrow.
Our policy team in Washington, D.C. and advocates on the ground across the United States now have more specific data to educate and urge elected officials and policymakers to prioritize biomedical research investment and create PD-supportive initiatives.
What can this research help us do?
The Foundation is conducting additional analyses to explore how these insights can inform our research policy priorities, as well as future public policy initiatives related to the economic burden of PD. Part of this work involves developing a project model to assess how certain possibilities, such as a ban of chemicals associated with PD or FDA approval of a treatment to slow or stop disease progression, would impact economic burden.
And what can you do to take action?
Click here to send an email to your senators and representatives in Congress to let them know about this new study and why it matters to people with Parkinson’s.
Interested in further understanding the total annual cost of Parkinson’s disease in the U.S.? Explore the Economic Burden and Future Impact of Parkinson’s Disease.