Making Parkinson’s Reportable

How many people in the United States have Parkinson’s? Ask one source and they will tell you 500,000. Another will say 1.5 million. Still others say 1 million. Why such a variance? Because the Parkinson’s census is not tracked.

Most illnesses in the United States are not “reportable” to the U.S. government for the purposes of tracking and identifying trends. Why is this a problem? It makes us lose vital information for research and better identification of causes and risks for the development of a myriad of conditions and illnesses such as Parkinson’s.

There are two pieces of legislation before the current session of Congress which would establish such databases with the Centers for Disease Control and Prevention (CDC). By making Parkinson’s and other neurological conditions reportable by healthcare providers, we would have a more accurate count of the prevalence of this disease as well as geographic breakdown and common denominators of the Parkinson’s census.

The Parkinson’s Action Network is working with partners who advocate for other neurological conditions on Capitol Hill for the passage of the proposed legislation. The director of the Parkinson’s Action Network and National Multiple Sclerosis Society co-wrote an op-ed in The Hill urging lawmakers to vote in favor of passage and President Obama’s signature into law.

You can urge your representatives to support this important legislation by calling, writing or emailing their offices. If you would like help contacting your legislators, the Parkinson’s Comfort Project is happy to help.

Be well…Jesse