When I wrote about the CFS Advisory Committee’s creation of a High Priority Recommendations document and how their process violated their own charter, many people asked me “What can we do about it?” Today, I can finally tell you what I did.
I contacted Public Citizen, a non-profit organization with the mission of serving “as the people’s voice in the nation’s capital.” Public Citizen has litigated cases under the Federal Advisory Committee Act, and has a Health Research Group that advocates for safer drugs and medical devices, equitable access to health care, and other issues.
On February 14th, Public Citizen sent a letter on my behalf to William B. Schulz, Acting General Counsel of the Department of Health and Human Services (you can read the full letter here). The letter details what I uncovered about the High Priority document, and asks the General Counsel to do two things:
We ask that you act to ensure that CFSAC complies with FACA and with its own charter going forward. We also ask that you return the January 2012 “High Priority Recommendations” document to the full committee for review, so that whatever action CFSAC chooses to take regarding those recommendations or any other transmission to HHS be debated and approved by the full committee, in public, as required by FACA.
It remains to be seen whether the General Counsel will act, and what he will do. There has been no official response as of today. However, upon checking the CFSAC website, I found that the High Priority document has been removed from the website. Perhaps this is a first step in correcting the Committee’s error.
I extend my sincere thanks to the people at Public Citizen who moved so quickly to assist me in this way. Sometimes, I feel like no one outside the CFS world cares about what we’re dealing with, and that requests for help will be met with disinterest or active disbelief. But Public Citizen did not dismiss my concerns or our disease. They recognized the public interest in the proper operation of advisory committees, and moved to help us. I am grateful for their assistance and support.
So what can you do? Help me boost the signal!!! Share my blog post, circulate it on Facebook and Twitter, and write about the Public Citizen letter on your own blogs. Tell your support groups and share it with all your contacts in the CFS world. Let’s ensure the community is informed about this action, and let’s monitor the progress together.