Who Has Parkinson's?
- Nearly one million people in the U.S. are living with Parkinson's disease (PD), which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig's disease (or Amyotrophic Lateral Sclerosis). This is expected to rise to 1.2 million by 2030.
- Approximately 60,000 Americans are diagnosed with PD each year.
- More than 10 million people worldwide are living with PD.
- Incidence of Parkinson’s disease increases with age, but an estimated four percent of people with PD are diagnosed before age 50.
- Men are 1.5 times more likely to have Parkinson's disease than women.
Estimated Healthcare Costs Related to PD in the U.S.
The combined direct and indirect cost of Parkinson’s, including treatment, social security payments and lost income, is estimated to be nearly $52 billion per year in the United States alone.
Medications alone cost an average of $2,500 a year and therapeutic surgery can cost up to $100,000 per person.
Parkinson's Prevalence Project
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:
- Is the prevalence of PD uniform throughout North America or does it vary by study and/or geography?
- What will the data tell us about the prevalence of Parkinson’s and about the disease itself?
The new study draws from larger and more diverse populations. The Parkinson’s Foundation Prevalence Project estimates that 930,000 people in the United States will be living with PD by the year 2020. This number is predicted to rise to 1.2 million by 2030.
Parkinson’s Prevalence Facts
- The last major PD prevalence study was completed in 1978.
- The new study confirms that men are more likely to have Parkinson’s than women and that the number of those diagnosed with PD increases with age, regardless of sex.
- The new study found that the prevalence of people diagnosed with PD varies by region. Study researchers will now devote more time to find out how.
The Importance of Establishing Parkinson’s Prevalence Numbers
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.
About the Map
The Parkinson’s Prevalence Map is a graphical representation of the results of the P4 paper applied to the population structure of individual states (those individuals 45 years old and older) using 2016 state level US Census data. The result is that states with large populations and/or large numbers of elderly will have higher estimated numbers of people with PD. This represents an improved estimate over previous attempts but is by no means definitive. The authors of the Parkinson’s Foundation Parkinson’s Prevalence Project paper note that their results likely represent the minimum number of people with PD in the U.S. – the number may actually be much higher. Therefore, the Parkinson’s Foundation is working to help support federal efforts to create a comprehensive national measure of those with PD.
Marras, C., Beck, J. C., Bower, J. H., Roberts, E., Ritz, B., Ross, G. W., Abbott, R. D., Savica, R., Van Den Eeden, S. K., Willis, A. W., Tanner, CM, on behalf of the Parkinson’s Foundation P4 Group (2018). Prevalence of Parkinson’s disease across North America. Npj Parkinson's Disease, 4(1), 1–7. http://doi.org/10.1038/s41531-018-0058-0