The GBS|CIDP Foundation is constantly working with our legislators on Capitol Hill to pass legislation that both directly and indirectly improves the lives of our patients. Here’s a snapshot of what we accomplished in 2015, and what we have on the docket for 2016:
- Consistent with the community’s request, NIH received an additional $2 billion at the end of the year, bringing the agency’s total for FY 2016 to $32 billion. An increased budget and a growing congressional interest in these conditions should facilitate expansion of key research portfolios and closer ties to the research community.
- The following language of specific interest to the community was previously included in the Committee Reports accompanying the FY 2016 LHHS Appropriations Bills. This language has been binding since it was released earlier this year and NIH will respond appropriately through the administration’s FY 2017 budget requests to Congress.
“Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)–the Committee encourages NIAID to initiate research activities into CIDP and related rate and debilitating autoimmune conditions to improve our scientific understanding of immune dysfunction including the underlying disease process.”
- The Food and Drug Administration (FDA) announced a Patient-Focused Drug Development meeting on “neuropathic pain associated with peripheral neuropathy.” The date has not yet been set, but FDA will need patient-feedback, particularly personal stories about ongoing challenges with these conditions.
- GBS belongs in the Department of Defense Peer-Reviewed Medical Research Program due to the fact it occurs at a higher rate in military personnel. To be eligible for the program though, certain Senators must request its inclusion during the FY 2017 appropriations process. If you are from one of the states listed below, please contact Anna.Yankelev@gbs-cidp.org as the Foundation would like to work with you to advance this request with your Senator.
Thad Cochran, Mississippi, Chairman Richard Durbin, Illinois, Ranking Member
Mitch McConnell, Kentucky Patrick Leahy, Vermont
Richard Shelby, Alabama Dianne Feinstein, California
Lamar Alexander, Tennessee Barbara Mikulski, Maryland
Susan Collins, Maine Patty Murray, Washington
Lisa Murkowski, Alaska Jack Reed, Rhode Island
Lindsey Graham, South Carolina Jon Tester, Montana
Roy Blunt, Missouri Tom Udall, New Mexico
Steve Daines, Montana Brian Schatz, Hawaii
Jerry Moran, Kansas