2015 GBS-Group2Winter 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 us (info@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


 

Spring 2015

Each spring, Foundation board members from across the country travel to Washington, DC for our annual Capitol Hill Advocacy Day. At this time, advocates receive comprehensive advocacy training and a review of the issues before meeting with the offices of their congressional representatives. This event and the direct interaction between advocates and congressional offices is essential to our community efforts to advance a legislative agenda and create positive change.

 LEGISLATIVE AGENDA

114TH CONGRESS, 1st SESSION

This year, the GBS|CIDP Foundation International is lobbying legislators to pass three bills that would benefit patients with GBS, CIDP or other related illnesses. We are asking congress to:

 

 

  1. Provide the National Institutes of Health (NIH) with at least $32 billion in Fiscal Year 2016 (FY 2016). This proportional increase will ensure that NIH can continue to expand and advance the research portfolio in this area. In this regard, the GBS|CIDP Foundation International joins the broader non-defense discretionary community in asking Congress to avert sequestration for FY 16.
  1. Cosponsor the bipartisan Patients’ Access to Treatments Act (H.R. 1600) to ensure patients have unhindered access to available treatment options. Current treatments options for GBS, CIDP, and variants can be incredibly expensive and out-of-pocket costs incurred through mechanisms like specialty insurance tiers can restrict a patient’s access to therapies they rely on. This initiative would limit co-payment, coinsurance, or other cost-sharing requirements applicable to prescription drugs in a specialty drug tier to the dollar amount (or its equivalent) of such requirements applicable to prescription drugs in a non-preferred brand drug tier, and for other purposes.
  1. List Guillain-Barré Syndrome as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) for FY 2016. Military service members, particularly those that travel internationally, are at a higher risk for infection. Two-thirds of GBS cases occur following an infection and most commonly these infections include gastroenteritisor respiratory tract infections; two prevalent illnesses amongst those that frequently travel abroad.

 

 

Below, please find a list of critical states and districts to recruit grassroots advocates from to effectively advance legislative and public policy priorities in the 114th Congress. This list is in priority order and based off of the membership of key committees in the House and Senate.

Kentucky

  • Senator Mitch McConnell (R)—Senate Majority Leader; Member, Appropriations Committee.
  • Senator Rand Paul (R)—Member, Health, Education, Labor, and Pensions (HELP) Committee.
  • Congressman Hal Rogers (R-5th District)—Chair, Appropriations Committee; representing London, Hazard, and Princess.
  • Congressman Brett Guthrie (R-2nd District)—Vice Chairmen, Energy and Commerce (E&C) Health Subcommittee; representing Bowling Green, Elizabethtown, and Danville.
  • Congressman Ed Whitfield (R-1st District)—Member, E&C Health Subcommittee; representing Campbellsville, Madisonville, and Mayfield.

 

California

  • Senator Diane Feinstein (D)-Member, Appropriations Committee.
  • Congresswoman Lucille Roybal-Allard (D-40th District)—Member, Labor-Health and Human Services-Education (LHHS) Appropriations Subcommittee; representing portions of Los Angeles.
  • Congresswoman Barbara Lee (D-13th District)—Member, LHHS Appropriations Subcommittee; representing Berkley, Oakland, and Alameda.
  • Congressman Mike Honda (D-17th District)—Member Appropriations Committee; representing Fremont, Cupertino, and Milpitas.
  • Congresswoman Lois Capps (D-24th District) – Member, E&C Health Subcommittee; representing Santa Barbara, Santa Maria, and Paso Robles.
  • Congresswoman Doris Matsui (D-6th District)—Member, E&C Health Subcommittee; representing Sacramento, North Sacramento, and North Highlands.
  • Congressman Tony Cardenas (D-29th District) – Member, E&C Health Subcommittee; representing the San Fernando Valley and North Hollywood.
  • Congresswoman Anna Eshoo (D-18th District)—Member, E&C Committee; representing Palo Alto, Mountain View, and Los Gatos.
  • Congressman Jerry McNerney (D-9th District)—Member, E&C Committee; representing Stockton, Lodi, and Antioch.
  • Congressman Ken Calvert (R-42nd District) – Member, Department of Defense (DoD) Appropriations Subcommittee; representing Corona and Murrieta.
  • Congressman David Valadao (R-21st District) – Member, Appropriations Committee; represents the Central Valley.
  • Congressman Sam Farr (D-20th District) – Member, Appropriations Committee; representing Monterey and Santa Cruz.
  • Congressman Devin Nunes (R-22nd District) – Member, Ways & Means Health Subcommittee; representing Clovis, Tulare and Visalia.
  • Congressman Mike Thompson (D-5th District) – Member, Ways & Means Health Subcommittee; representing Sonoma, Napa and Vallejo.

 

Pennsylvania

  • Senator Bob Casey (D)—Member, HELP Committee.
  • Senator Patrick Toomey (R) – Chair, Finance Committee’s Health Care Subcommittee.
  • Congressman Joseph Pitts (R-16th District)—Chair, E&C Health Subcommittee; representing Lancaster, Reamstown, and Oxford.
  • Congressman Tim Murphy (R-18th District)—Member, E&C Health Subcommittee; representing Bethel Park, Washington, and Canonsburg.
  • Congressman Mike Doyle (D-14th District)—Member, E&C Committee; representing portions of Pittsburgh.
  • Congressman Charlie Dent (R-15th District)—Member, LHHS Appropriations Subcommittee; representing Allentown, Bethlehem, and Hershey.
  • Congressman Chaka Fattah (D-2nd District) – Member, LHHS Appropriations Subcommittee; representing parts of Philadelphia.

 

Illinois

  • Senator Mark Kirk (R)—Member, LHHS Appropriations Subcommittee; Member, HELP Committee.
  • Senator Richard Durbin (D)—Ranking Member, DoD Appropriations Subcommittee; Member, LHHS Appropriations Subcommittee
  • Congressman John Shimkus (R-15th District)—Member, E&C Health Subcommittee; representing Danville, Effingham, and Salem.
  • Congresswoman Jan Schakowsky (D-9th District)—Member, E&C Health Subcommittee; representing Evanston, Park Ridge, and Arlington Heights.
  • Congressman Adam Kinzinger (R-16th District)—Member, E&C Committee; representing, Dekalb, Lasalle, and Wateska.
  • Congressman Bobby Rush (D-1st District)—Member, E&C Committee; representing portions of Chicago.
  • Congressman Peter Roskam (R-6th District) – Member, Ways & Means Health Subcommittee; representing Cook, DuPage and McHenry.
  • Congressman Danny Davis (D-7th District) – Member, Ways & Means Health Subcommittee

 

Kansas

  • Senator Jerry Moran (R)—Member, LHHS Appropriations Subcommittee.
  • Senator Pat Roberts (R)—Member, HELP Committee; Member, Finance Health Care Subcommittee.
  • Congressman Kevin Yoder (R-3rd District)—Member, Appropriations Committee; representing Overland Park, Olathe, and portions of Kansas City.
  • Congressman Mike Pompeo (R-4th District)—Member, E&C Committee; representing Wichita, El Dorado, and Pratt.
  • Congresswoman Lynn Jenkins (R-2nd District) – Member, Ways & Means Health Subcommittee.

 

Maryland

  • Senator Barbara Mikulski (D)—Ranking Member, Appropriations Committee; Member, HELP Committee; Member, DoD Appropriations Subcommittee; Member, LHHS Appropriations Subcommittee.
  • Senator Benjamin Cardin (D) – Member, Finance Committee’s Healthcare Subcommittee
  • Congressman Andy Harris (R-1st District) – Member, LHHS Appropriations Subcommittee; representing the Eastern Shore.
  • Congressman Dutch Ruppersberger (D-2nd District)—Member, House Appropriations Committee; representing portions of Baltimore, Towson, and Edgewood.
  • Congressman John Sarbanes (D-3rd District)—Member, House E&C Health Subcommittee; representing portions of Baltimore, Columbia, and Annapolis.

 

North Carolina

  • Senator Richard Burr (R)—Member, HELP Committee; Member, Finance Health Care Subcommittee
  • Congressman David Price (D-4th District)—Member, Appropriations Committee; representing Chapel Hill, portions of Raleigh, and portions of Fayetteville.
  • Congressman G.K. Butterfield (D-1st District)—Member, E&C Health Subcommittee; representing Durham, Roanoke Rapids, and Goldsboro.
  • Congresswoman Renee Ellmers (R-2nd District)—Member, E&C Health Subcommittee; representing portions of Raleigh, portions of Fayetteville, and Carthage.
  • Congressman Richard Hudson (R-8th District) – Member, E&C Committee; representing Concord and Lumberton.

 

Texas

  • Senator John Cornyn (R)—Member, Senate Finance Committee
  • Congressman Gene Green (D-29th District)—Ranking Member, E&C Health Subcommittee; representing portions of Houston.
  • Congressman Joe Barton (R-6th District)—Chairman Emeritus, E&C Committee; Member, E&C Health Subcommittee; representing Corsicana, Waxahachie, and portions of Fort Worth/Arlington
  • Congressman Kevin Brady (R-8th District) – Chairman, Ways & Means Health Subcommittee; representing Montgomery and Walker counties.
  • Congresswoman Kay Granger (R-12th District)—Member, DoD Appropriations Subcommittee; representing Weatherford, Decatur, and portions of Fort Worth.
  • Congressman John Carter (R-31st District)—Member, DoD Appropriations Subcommittee; representing Temple, Georgetown, and Round Rock.
  • Congressman John Culberson (R-7th District)—Member, Appropriations Committee; representing portions of Houston.
  • Congressman Henry Cuellar (D-28th District)—Member, Appropriations Committee; representing Rio Grande City, portions of Nuevo Laredo, and portions of San Antonio.
  • Congressman Michael Burgess (R-26th District)—Member, E&C Health Subcommittee; representing Denton, Lewisville, and Keller.
  • Congressman Pete Olson (R-22nd District)—Member, E&C Committee; representing Pearland, Sugar Land, and Richmond.
  • Congressman Bill Flores (R-17th District) – Member, E&C Committee; representing Waco and College Station.
  • Congressman Sam Johnson (R-3rd District) – Member, Ways & Means Health Subcommittee; representing McKinney, Plano and Frisco.
  • Congressman Kenny Marchant (R-24th District) – Member, Ways & Means Health Subcommittee; representing Carrolton and Cappell.

 

Washington

  • Senator Patty Murray (D) – Ranking Member, HELP Committee; Ranking Member, LHHS Appropriations Subcommittee; Member, DoD Appropriations Subcommittee.
  • Senator Maria Cantwell (D) – Member, Finance Commiteee’s Health Care Subcommittee.
  • Congressman Jim McDermott (D-7th District) – Ranking Member, Ways & Means Health Subcommittee; representing parts of Seattle, Shoreline and Kenmore.
  • Congresswoman Jamie Herrera Beutler (R-3rd District)—Member, Appropriations Committee; representing Vancouver, Long View, and Centralia
  • Congressman Derek Kilmer (D-6th District) – Member, Appropriations Committee; representing Tacoma.
  • Congresswoman Cathy McMorris Rodgers (R-5th District)—Member, E&C Committee; representing Spokane, Walla Walla, and Pullman.

 

New York

  • Senator Chuck Schumer (D)-Member, Senate Finance Committee
  • Congresswoman Nita M. Lowey (D-17th District) – Ranking Member, House Appropriations Committee; representing Rockland and Westchester.
  • Congressman Jose Serrano (D-15th District) – Member, House Appropriations Committee; representing the Bronx.
  • Congressman Steve Israel (D-3rd District) – Member, House Appropriations Committee; representing the North Shore of Long Island.
  • Congressman Eliot Engel (D-16th District) – Member, E&C Health Subcommittee; representing Mount Vernon, Yonkers and Rye.
  • Congressman Chris Collins (R-27th District) – Member, E&C Health Subcommittee; representing Orleans, Genesee, Wyoming, and Livingston.
  • Congressman Paul Tonko (D-20th District) – Member, E&C Committee; representing Albany and Schenectady.
  • Congressman Yvette Clarke (D-9th District) – Member, E&C Committee; representing Brooklyn.