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ME/CFS SOUTH AUSTRALIA INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

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ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

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US 21st Century Cures Act Passes House With Overwhelming Bipartisan Support

Wednesday 7 December 2016

 

From the Solve ME/CFS Initiative:

 

Discovery - Development - Delivery
 

21st Century Cures Act Passes House with Overwhelming Bipartisan Support

December 2, 2016
Copyright © 2016 The Solve ME/CFS Initiative

ME/CFS advocates have been eagerly awaiting passage of the 21st Century Cures Act since it was initially introduced in 2013, given it was originally written to increase NIH funding and fast-track research and treatment development. On Wednesday, November 30, a compromise bill with modified provisions from the original 21st Century Cures Act swept the House in a 392 – 26 vote. “We have listened to every group out there,” said Representative Fred Upton, author of the bill. “I think we have a pretty good bipartisan bill that’s going to meet everyone’s test of how legislation should be done.” Had the bill not been passed before the end of December, the process to craft it would have had to start again from scratch in the new year.

While the new $6.3 billion compromise funnels new funds to the NIH, those funds are targeted for specific programs such as The Precision Medicine Initiative, Cancer Moonshot, and the BRAIN Initiative and are unlikely to benefit ME/CFS research directly. Additionally, unlike the original bill, these funds are subject to yearly congressional review and can potentially be withheld or redirected.

The compromise package passed this week lost many key initiatives supported by our organization, such as the “OPEN” Act, incentives for misunderstood disease research, and flexible funding for the NIH. Additional elements, such as funds to combat opioid addiction, provisions addressing Medicare, and mental healthcare streamlining, were added in the compromise.

 

Full article…

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