We estimate that 500,000 – 1.5 million Americans are living with Parkinson’s disease, but that figure is just a rough estimate. This lack of core knowledge inhibits Parkinson’s research, treatments, programs, and services.
Since 2009, the Parkinson’s Action Network (PAN) has worked on an effort to collect better data on Parkinson’s disease, multiple sclerosis, and other neurological diseases.
Advancing Research for Neurological Diseases Act of 2015
On January 13, 2015, H.R. 292, the Advancing Research for Neurological Diseases Act, was introduced by Representatives Michael C. Burgess (R-TX) and Chris Van Hollen (D-MD). The Senate bill, S. 849, was introduced by Senators Johnny Isakson (R-GA) and Christopher Murphy (D-CT) on March 24, 2015.
The Advancing Research for Neurological Diseases Act of 2015 would create a national data collection system for neurological diseases, including Parkinson’s disease and multiple sclerosis, at the Centers for Disease Control and Prevention (CDC). The system will collect information on the incidence and prevalence of neurological diseases and provide a foundation for evaluating and understanding many factors such as geographic clusters of diagnoses, variances in the gender ratio, disease burden, and changes in health care practices. In addition, the data collection system would support a wide range of research initiatives, allow for future planning of healthcare needs, and promote disease education about neurological diseases.
That’s why this is a top priority of the Parkinson’s community – the data collected under this could truly be a game-changer for a deeper understanding of neurological diseases and provide critical information to researchers as they work on new treatments and the ultimate goal: cures. Read our support letter.
Thanks to the efforts of Parkinson’s advocates, the Advancing Research for Neurological Diseases Act, was included in the 21st Century Cures Act, a bipartisan piece of legislation aimed at spurring development of new treatments for diseases. On May 21, 2015, the House Energy & Commerce Committee unanimously passed the 21st Century Cures Act and the House is expected to bring the bill to a vote on the floor in July.
PAN has been working on this bill for many years. This legislation, formally known as the National Neurological Diseases Surveillance System Act, passed the House of Representatives by voice vote in the 111th Congress but failed to pass the Senate before the end of session. The bill was reintroduced in the 112th Congress but, despite bipartisan support, the bill did not move through Congress. In the 113th Congress, PAN and the National Multiple Sclerosis Society, our main partner on this issue, took a step back to assess need for the legislation and to find possible alternatives to collecting data on these neurological conditions. The assessment showed that the government is a key partner in creating a coordinated and efficient system for data collection.
We believe this is the year we’ll be successful but we need your help! Ask your Members of Congress to support the Advancing Research for Neurological Diseases Act of 2015! Take action today!