A month ago, patient advocate Jennifer Spotila discovered that the U.S. Senate was proposing to zero-out the ME/CFS budget at the Centers for Disease Control and Prevention.
This discovery launched a wave of emails, letters, and phone calls to key Senate staff from hundreds of people, including representatives of six different ME/CFS organizations. After this coordinated effort, we now know what happened – and we’re hopeful that $5.4 million in CDC funding will be restored for fiscal year 2016.
On Aug. 27, Senate Appropriations Committee staffer Chol Pak spoke with Carol Head of the Solve ME/CFS Initiative and Charmian Proskauer of the Massachusetts CFIDS/ME & FM Association. Pak is largely responsible for the CDC’s budget in the Senate.
Pak said that back in February when the budget process began, he knew nothing about ME/CFS. The Senate was looking to cut a big chunk from the CDC budget, and they began hunting for places to trim. Pak hears from many patient advocacy groups during the annual budget process, but no one had contacted him about ME/CFS. A small program with no representation on Capitol Hill was a prime candidate for slashing, so Pak and his colleagues zeroed out the proposed $5.4 million ME/CFS fund in the Senate’s proposed CDC budget.
Pak is now well-informed about the illness. He read every email sent by ME/CFS advocates, and he responded to many. He understands the importance of continuing to fund the CDC’s “Multisite Clinical Assessment of CFS,” and he now knows that researchers are on the cusp of a breakthrough in understanding ME/CFS. Head and Proskauer left the meeting “cautiously optimistic” that the original $5.4 million in ME/CFS funding passed by the House of Representatives will be restored in the appropriations bill before the budget becomes law.
There is no need to send more letters to Senate staff working on the CDC budget. Letters to your Senators and Representatives about the general need for more funding are always helpful.
ME/CFS organizations learned a lot from these discussions – namely the importance of a constant presence on Capitol Hill. Pak expressed frustration that he had no information about ME/CFS when the budget process began.
Each February, Congress starts work on the next year’s budget, and this is when staffers responsible for the CDC and NIH budgets start meeting with patient advocates. This year, Pak said, he met with over 100 disease groups.
The appropriations bill then moves through hearings in the spring, and a final vote before the fiscal year begins Oct. 1. (Note that Congress has not met this deadline for several years, instead operating on a continuing resolution that freezes spending at the previous year’s budget.)
What are our next steps? Our organizations are going to continue close contact with House and Senate Appropriations staff responsible for CDC and NIH funding for ME/CFS. The message is simple: If they don’t know about us, they don’t know why they should fund us.
#MEAction is seeking to retain a lobbyist to advocate on our behalf on an ongoing basis. Donate to support that endeavor.
Photo Courtesy of the Architect of the Capitol
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the