Congress has heard your requests and the House of Representatives will be considering H.R. 1362, the National Neurological Diseases Surveillance System Act, tomorrow on the House floor! Just last week, the House Energy & Commerce Committee met to mark-up H.R. 1362. During this meeting, the National MS and Parkinson’s Disease Registries Act was expanded to make the surveillance system available to all neurological conditions, maintaining MS and Parkinson’s as a priority. The Committee unanimously passed H.R. 1362.
This legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including multiple sclerosis and Parkinson’s. Currently, such a national coordinated system does not exist to collect data on MS. This system could help uncover and inform promising areas of MS research such as: genetic and environmental risk factors, and support the discovery of disease therapies, treatments, and one day—a cure.
Victory in the House will bring us further than we have ever been before, so please continue to voice your support! Click here to email your U.S. Representative today!
3 comments:
I usually take action on the bills that come from the MS Society, but this last email was the most awful sounding bill--surveillance??
Perhaps this is a good thing but the language is scary and shocking to me and there seems to be little addressing privacy. Yes, it's buried in the bill and you have to read the bill's language.
I think someone has to be more sensitive to the privacy concerns of people with MS. Wow, what an email.
PS I was referring to the email I got sent from the msactionnetwork.
The Society is very concerned with maintaining privacy and worked in collaboration with the bipartisan group of over 200 Congressional cosponsors to ensure that the strictest privacy standards are used. The bill requires the Secretary to ensure that privacy and security protections applicable to the National Neurological Diseases Surveillance System are at least as stringent as the privacy and security protections under HIPAA privacy and security law.
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