As members of the Parkinson’s community know well, the disease often comes with increasing costs for patients, their families and care partners. While some of these expenses are tangible, such as insurance co-pays, others are more difficult to quantify, such as taking time off work.
“The Economic Burden of Parkinson’s Disease” is a new study that seeks to capture more of the financial costs associated with Parkinson’s. Study researchers will look at de-identified data from the Centers for Medicare and Medicaid Services, the Centers for Disease Control and Prevention and the Bureau of Labor Statistics, among other government agencies, to investigate how much patients pay for their medical care. They will also use these datasets to examine how leaving the workforce or reducing work hours — whether it’s due to living with Parkinson’s or caring for a loved one with the disease — affects family finances.
As part of the study, researchers will deploy a survey to patients and families to learn more about the economic impact of the disease. In addition to asking about the topics mentioned above, the survey will gather information on expenses that aren’t easy to assess, such as time spent providing unpaid care to a family member. (All information submitted through the survey will be de-identified, meaning your name will not be connected to it.)
“The insights our community members will share through this survey are critical to better understanding the economic burden of Parkinson’s,” says Jim Beck, PhD, Parkinson’s Foundation Chief Scientific Officer. “Patients and loved ones are the only people who can provide this valuable information and help paint a more complete picture of life with this disease.”
The results of this study, expected to be made available in early 2019, will be shared with members of Congress so they can better understand how much Parkinson’s costs the United States and how they can play a role in reducing these expenses. The Parkinson’s community will use the findings to advocate for increased federal funding for research and other policy changes that support access to affordable care.
The economic burden study is sponsored by The Michael J. Fox Foundation, with support from the Parkinson’s Foundation, several industry groups (Acadia, Acorda, Adamas and Biogen), the American Parkinson Disease Association and The Parkinson Alliance (with the potential for additional organizations to join in the future). The study will be conducted by the Lewin Group, a health care consulting firm.
The survey is open until November 7.