The annual economic burden of Parkinson’s disease on U.S. patients, families, and the federal government is nearly $52 billion, more than double the previous estimates, according to a comprehensive study by the Michael J. Fox Foundation (MJFF).
This is the first study to examine the various ways Parkinson’s affects a patient’s finances and their ability to participate in the labor market, according to a press release. The report is touted as the most complete assessment to date of the disease’s economic toll.
The $51.9 billion includes some $25.4 billion that goes toward hospitalizations, medications, and other direct medical costs, and $26.5 billion in non-medical costs such as missed work, lost wages, early forced retirement, and family caregiver time.
Previously, the combined direct and indirect costs of Parkinson’s in the United States were estimated at $25 billion annually. For many years, according to the release, the disorder’s financial impact was vastly underestimated.
Called “The Economic Burden of Parkinson’s Disease,” the study was conducted with support from the Parkinson’s Foundation, American Parkinson Disease Association, The Parkinson Alliance, and several pharmaceutical companies.
“There are a lot of surprise costs when you have Parkinson’s,” said Steve DeWitte, a Parkinson’s research funding advocate. “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 found that the federal government spends nearly $25 billion each year on patient care. Of that, $2 billion is paid through social security, with the balance handled by Medicare. Roughly 90% of Parkinson’s patients receives 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 1 million people with Parkinson’s in the United States,” said Todd Sherer, PhD, MJFF’s 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.”
These findings underscore the prospective impact of policy or treatment interventions, he added. Advocates now have more specific data they can use to educate lawmakers and to urge them to prioritize biomedical research investment and to develop support initiatives.
To understand and examine the cost components of Parkinson’s disease, the researchers used data from Medicare, the Centers for Disease Control and Prevention, the U.S. Census Bureau, and other sources. Such data-driven knowledge is expected to go a long way toward raising funds for research to find therapies to ultimately ease the growing burden.
“These results provide deep insight into the indirect costs — those costs the people living with Parkinson’s and their families must shoulder alone,” said James Beck, PhD, the Parkinson’s Foundation’s senior vice president and chief scientific officer. “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 MJFF is now examining how this study can help shape its research policy priorities, as well as future public policy efforts related to the economic burden of Parkinson’s. For one, it plans to develop a project model to assess how specific actions — such as a ban on chemicals associated with Parkinson’s or federal approval of a disease-modifying treatment — would affect the economic burden.