Monday, May 18, 2015

21st Century Cures - US Energy and Commerce Committee

You can see from responses to this that stroke does not seem to be involved at all. What the hell are the ASA and NSA good for if they don't represent the needs of survivors for stroke research?
http://energycommerce.house.gov/cures
In the 393 page discussion document, not one word on stroke;
http://energycommerce.house.gov/sites/republicans.energycommerce.house.gov/files/114/Analysis/Cures/20150127-Cures-Discussion-Document.pdf
The responses are here; still nothing on stroke, ASA and NSA still MIA
http://energycommerce.house.gov/sites/republicans.energycommerce.house.gov/files/114/Analysis/Cures/20150316CuresRespondents.pdf

I guess we will have to wait for the 22nd century, you better hope your grandchildren live than long.
Or you find some billionaire friends willing to fund stroke research on their own.
“Through the exceptional leadership of Rep. Upton and Rep. DeGette, the tireless work of the Energy and Commerce Committee staff, and a robust dialogue with researches, FDA, NIH, advocates and industry, this legislative draft is taking significant steps toward creating a strong foundation to spur innovation.” 
“The latest draft reflects the tremendous commitment both of you have to developing this initiative in a bipartisan manner. You, your colleagues and staff members should be applauded for the amount of work expended over the past few months to refine and improve the concepts included in the discussion draft and produce this comprehensive draft legislation.” 
“We commend you for this important effort to improve the delivery of health care to patients.”
United for Medical Research, which includes dozens of coalition partners including patient groups, universities, and other industry leaders listed online here:
“We are grateful for the leadership of Chairman Fred Upton (R-MI) and Representative Diana DeGette (D-CO) and the tremendous effort that they and the other members of the House Energy and Commerce Committee have committed to the process of developing meaningful legislation on NIH funding and policy.”
“This comprehensive, thoughtful and bipartisan initiative to examine and update our national research and development infrastructure comes at such an important time to our community as life-altering new therapies for Duchenne are now closer than ever before.” 
“Thank you for your continued support of pediatric medical research…”

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