Weathering the Storms of Washington DC: SMCI meets with 30 Senators and offices to fight for research and patients

Left to right: Leah Williams, patient advocate; Carol Head, President of SMCI; Senator Ed Markey (MA), Emily Taylor, SMCI Director of Advocacy and Public Relations; Mike Atherton, member of SMCI board of directors, and Gail Cooper, #MEAction Congressional Chair

Last October, Congress passed a continuing resolution instead of a budget for Fiscal Year 2017 and the ME/CFS community celebrated the preservation of our limited ME/CFS federal funding. Since that moment, the Solve ME/CFS Initiative has been looking ahead to the future of our federal dollars. We did not pause to celebrate this small victory, but immediately looked ahead to work proactively on Fiscal Year 2018 which starts November 1, 2017

Historically, ME/CFS advocacy efforts have been predominantly reactions; trying to prevent cuts or correct poor policy decisions on the Federal level after those decisions had already been made. This year, our team has collaborated with advocates from across the country as part of a reinvigorated and proactive federal advocacy strategy to make progress with the Federal government.

Beginning in January, our team began crafting our strategic approach to the Congressional appropriations process for fiscal year 2018. The big-picture goal of these actions is to be proactive in the budget conversation and avoid the reactive scramble to preserve funding. The funding process is an annual event. Congress is tasked with producing a budget resolution and 12 appropriations bills for each federal fiscal year. The process generally begins in February with the formal submission of the President’s budget request. Congress initially responds to the request with a budget resolution which establishes the total level of discretionary funding (known inside the beltway as the “302a allocation”). Through March and April, Congress responds in the form of hearings and markups of those 12 appropriations bills which divide up the 302a allocation and set policy targets in the process through committee reports that accompany each of the 12 appropriations bills.

The SMCI strategic planning process identified three key targets for the “appropriations push” during our March visits: 1) A request to include more assertive instructions to key federal agencies regarding ME/CFS in the fiscal year 2018 appropriations committee report 2) A request for additional funds in the CDC Chronic Fatigue Syndrome program, specifically to fund medical education and epidemiological research and 3) identify a potential well-placed Senate champion who would help return ME/CFS into the eligible peer-reviewed medical research program under the Congressionally Directed Medical Research Program.

Pictured left to right, Senator Martin Heinrich (NM), SMCI Advocacy and engagement manager Emily Taylor, and #MEAction Congressional Chair, Gail Cooper.

To accomplish these goals, SMCI developed a target list of 50 Members of Congress, Congressional Committees, and federal agencies in Washington DC. SCMI was successful at securing meetings with 30 of the 50 targets from March 14 through March 16, 2017 with the assistance of local constituent patient advocates. These meetings included:

  • Senator Martin Heinrich
  • Senator Ed Markey
  • Senator Elizabeth Warren
  • The Office of Senate President Pro Tempore Orin Hatch
  • The Office of Senator Patty Murray
  • The Office of Senator Bill Cassidy
  • The Office of Senator Diane Feinstein
  • The Office of Senator Mark Warner
  • The Office of Senator Roy Blunt
  • The Office of Senator Richard Burr
  • The Office of Senator Tammy Baldwin
  • The Office of Senator Lamar Alexander
  • The Office of Senator Kirsten Gillibrand
  • The Office of Senator Catherine Cortez Masto
  • The Office of Senator Richard Durbin
  • The Office of Senator Al Franken
  • The Office of Senator Chris Van Hollen
  • The Office of Senator Kamala Harris
  • The Senate Committee on Health, Education, Labor, and Pensions (HELP)
  • The Senate Committee on Appropriations
  • The Senate Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education and related agencies
  • The Office of Congresswoman Zoe Lofgren
  • The Office of Congresswoman Lucille Roybal-Allard
  • The Office of Congresswoman Barbara Lee
  • The office of Congresswoman Karen Bass
  • The Office of Congressman Ted Lieu
  • The House Committee on Appropriations
  • The Health and Human Services Office of Women’s Health
  • The designated federal officer for CFSAC
  • The National Institutes of Health
  • The Research!America Alliance

The meetings yielded positive results and our follow-up continues to secure our target objectives. At this time, many offices have committed to assisting and carrying key components of our actions to reach our goals. As the appropriations process continues, our work will follow, ensuring that our key targets are included and carried in each part of the appropriations cycle until finalized in the Fiscal Year 2018 budget on October 1st, 2017.