A new study resulting from a partnership of Parkinson’s organizations and industry partners reveals that the economic burden of Parkinson’s disease (PD) in the U.S. is $51.9 billion – nearly double previous estimates.
Highlights from the Study:
Why Is this Study Important?Understanding the annual economic toll on people with PD, their families and the government helps when advocating for more federal funding for Parkinson’s research. It also allows us to better serve people with PD and their families with programs to help them live better with the disease, touching on areas they are most concerned about and where we can have the most impact.
How Was the Study Performed?The study, The Economic Burden of Parkinson’s Disease, was sponsored by The Michael J. Fox Foundation, with support from the Parkinson’s Foundation, several industry groups (ACADIA, Adamas, AbbVie, Acorda and Biogen), the American Parkinson Disease Association and The Parkinson Alliance.
The Michael J. Fox Foundation, with support from the Parkinson’s Foundation and other community organizations and industry partners, used data from public databases including Medicare, the Centers for Disease Control and Prevention and the Census Bureau. Several Parkinson’s organizations, including the Parkinson’s Foundation, assisted with data collection through sharing a survey across websites, social media networks and email communications. This joint effort resulted in the most comprehensive assessment illustrating the annual economic toll on the Parkinson’s community and the U.S. government in history.
When a large population of people have a disease like Parkinson’s disease (PD), it’s essential to have accurate numbers of how many people have the disease, where they live and why they have it. This information helps researchers, healthcare professionals and even legislators determine how many resources should be allocated to addressing and treating a disease. Key terms, like incidence and prevalence, are often used when talking about who has PD.
Incidence: A measure of new cases arising in a population over a given period of time, typically incidence is measured as the number of people diagnosed per year.
Prevalence: A measurement of all individuals affected by the disease at a particular time (for example, the number of people with Parkinson’s on March 19, 2018).
To calculate an accurate estimate of the prevalence of Parkinson’s throughout North America, the Parkinson’s Foundation formed the Parkinson’s Prevalence Project in 2014. Prior estimates were based on a small number of cases from areas that are not representative of the nation as a whole — like a previous study from 40 years ago that extrapolated the 26 people with PD in a rural Mississippi county as a benchmark estimate for Parkinson’s prevalence in the U.S.
In addition to finding the most comprehensive number to date, the new prevalence study sought to answer two main questions:
Parkinson’s Prevalence Facts
Parkinson’s Prevalence estimates will help the Parkinson’s Foundation attract the attention of federal and state government as well as the pharmaceutical industry to the growing need and urgency in addressing PD. This is an important first step to better understanding who develops PD and why.
The next phase of this study will be to determine the rate of PD diagnosis or incidence, how that has changed over time and what is the rate of mortality among those affected by PD. Determining the prevalence and incidence will allow the PD community to effectively advocate for additional money and resources necessary to support Parkinson’s research.
Parkinson’s Foundation Prevalence Project numbers highlight the growing importance of optimizing expert Parkinson’s care and treatment for people with Parkinson’s, which would help future caregivers and ease the strain on health and elder care systems.
By supporting this study, the Foundation works to better understand Parkinson’s with the goal of solving this disease. Establishing these numbers and using them to educate PD communities and influence legislation will help the foundation provide tailored resources, outreach and advocacy to the underserved PD populations across the nation. The entire published study is available in the Parkinson’s Foundation scientific journal, npj Parkinson’s Disease.
(Reprint from Parkinson's Foundation's blog site)