Counting Parkinson’s patients one by one

If you ask how many people in the United States are living with Parkinson's disease, you can get a number anywhere from 500,000 to 1,500,000 or more, depending on the source. Why such a disparity in the numbers? Why, despite advances in research and so many improvements in medical data collection, don't we know more about Parkinson's disease?

The answer is that we simply don’t know. We don’t know, in large part, because there is no national database on Parkinson’s disease and other neurological disorders in the United States.  An integrated national database would help answer many questions, including: does the disease affect more men or more women? How many Parkinson’s patients should be classified as early onset? What effect does the environment have on the disease? How many different types of Parkinson’s disease exist? 

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Parkinson’s is a progressive neurological disease. You may be familiar with Michael J. Fox and Muhammad Ali and the tremors and involuntary movements they exhibit. But not all people with Parkinson’s disease have tremors. Symptoms can vary widely, including many symptoms not readily seen, such as muscle stiffness, depression, and cognitive difficulties.

Someone may not be able to tell from looking at me, but I have had Parkinson’s for several years and it has had a significant impact on my life. My diagnosis may not be uncommon, yet the intricacies of my experience are neither well understood nor well documented.

Our basic lack of data has far-reaching effects. Without complete information, policymakers devote insufficient funding for services and the research that can help us find new treatments and potential cures. Pharmaceutical companies choose other diseases in which to invest their research monies. Nonprofit organizations dedicate fewer resources for support services. Without data, the world of Parkinson’s treatment and services can be a mystery without much hope--and the same holds true for many other progressive neurological disorders.

The House-passed 21st Century Cures Act would create a neurological disease registry at the Centers for Disease Control. The overwhelming bipartisan effort in the House should not be wasted. I urge the Senate HELP committee to support similar legislation about the registry, the Advancing Research for Neurological Diseases Act.

Establishing a national database is a smart investment. Currently, Americans spend more than $500 billion per year treating neurological diseases. This database would cost $25 million over five years, and it would ensure that we are treating neurological diseases more effectively. Much of the additional funding for Parkinson’s would support research at our world-renowned institutions, including Massachusetts General Hospital and Harvard Medical School.

The benefits of this bill should appeal to both Democrats and Republicans. As Newt Gingrich has pointed out, if we cannot effectively treat and prevent neurological diseases such as Parkinson's and Alzheimer's in the near future, the growing prevalence of these diseases among the aging Baby Boomer generation could soon cost the nation trillions more in healthcare and support services.

If the Senate does not act soon, the issue could become lost in the fray of a presidential election year. What we don’t know is hurting us and the solution is clear. Once we know more about patients with Parkinson’s and other neurological diseases, we will be closer to finding a cure and improving lives.

Harvey is a Massachusetts assistant state director for the Parkinson’s Action Network and a member of the board of directors of the Massachusetts Chapter of the American Parkinson’s Disease Association.

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