CFSAC Renewed

checkmarkAs expected, the charter for the CFS Advisory Committee has been renewed for another two years. This has become a routine operation, but the new charter makes some intriguing changes to the CFSAC. I also have new information on potential membership changes.

Purpose of CFSAC

Under the old charter, CFSAC made recommendations on the state of the knowledge of diagnosis and treatment, strategies for medical education, and partnerships to improve patient quality of life. This is still the case, but the new charter adds a new task for the committee:

The Committee shall advise and make recommendations to the Secretary, through the ASH, on a range of topics including:  . . . strategies to insure that input from ME/CFS patients and caregivers is incorporated into HHS policy and research.

You might remember that former Assistant Secretary Dr. Koh had told ME/CFS patients that CFSAC was their channel of input into HHS. This change formalizes and expands that. Not only does CFSAC receive input from patients, it now has been charged with recommending strategies for incorporating input from patients and caregivers into policy and research.

This lines up nicely with the working group formed at the last meeting to make recommendations on how HHS agencies can better receive input from stakeholders. This working group is chaired by Dr. Dane Cook, but has not yet begun its work.

Follow Through

During CFSAC’s long history, both voting members and the public have been frustrated by the fact that recommendations seem to go nowhere. Only recently have the agencies responded to recommendations in writing. But most recommendations were not adopted, and we never knew who was responsible for making those decisions and carrying them through. Now the new charter makes it explicit:

The ASH shall be given the responsibility to coordinate and monitor the implementation of those recommendations adopted by the Secretary.

This sounds almost czar-like, in that one person is responsible for monitoring implementation of recommendations across agencies. However, the wrinkle is that this only applies in the case of adoption of recommendations by the Secretary. Furthermore, this oversight responsibility is limited to CFSAC recommendations, NOT the work on ME/CFS as a whole.

Voting and Non-Voting Membership

The charter makes some significant changes to membership of CFSAC. The old charter specified eleven voting members, but this is now increased to thirteen. There will still be seven biomedical researchers, but only three members with experience in service delivery, insurance, etc. The new charter now states that there will be three voting members who are patients or caregivers affected by ME/CFS.

This is highly significant. CFSAC’s custom has been to appoint a single patient to the committee (although that was not a specific mandated quota). This placed a heavy burden on those individuals to try and represent the diversity of patients’ experiences and views. By increasing the number to three, CFSAC will benefit from a broader range of patient perspectives.

Changes were also made to the ex officio members representing HHS agencies. The Centers for Medicare and Medicaid services will no longer be represented. This is odd, since care reimbursement is such a big issue for ME patients. Two non-HHS members will be added. The Department of Veterans Affairs and the Department of Defense will both be represented on CFSAC, a first for involving Departments outside of HHS. This change is especially intriguing because the Department of Defense funds a great deal of biomedical research. It would be fantastic if ME researchers could tap into that on a greater scale than they have so far.

A New Roster

There are multiple vacancies on CFSAC. Rebecca Collier’s term expired in May, and Dr. Lisa Corbin’s expired in June (although she is still listed on the roster). Dr. Adrian Casillas and Dr. Mary Ann Fletcher will finish their terms at the end of December. In addition, the new charter added two additional members, both of whom will be patients or caregivers. A total of six new members will be needed by the end of 2016, with four of those chairs being vacant right now. Another three members (Dr. Sue Levine, Dr. Dane Cook, and Dr. Gary Kaplan) will reach the end of their terms in May 2017.

This creates a conundrum for HHS. The call for nominations resulted in only four nominees from the public. They are all terrific: Dr. Cindy Bateman, Dr. Nancy Klimas, Dr. Lenny Jason, and Mary Dimmock. My information is that appointments are working their way through the approval process, but I don’t know how many people (or who) have been put forward for approval. Given the roster situation, HHS should issue another call for nominations very soon. Approvals take far too long – about nine months – and so the process must begin now.

Will It Matter?

Most of the changes to the CFSAC charter are positive. If the new members have the right experience and skills, then recommendations from CFSAC should improve. But is HHS ready to accept these recommendations?

The other issue is urgency. CFSAC meets only twice a year, and one meeting is by webinar. As far as I know, the three work groups formed at the May 2016 meeting have not begun their work yet. Six months is plenty of time for a work group to come up with well-supported recommendations, but if they have not met yet then I doubt we will hear much from the work groups at the next meeting (perhaps in November). If CFSAC continues to do its work at the same pace, and in the same way, then the charter changes are more tweaks than substantial improvements.

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11 Responses to CFSAC Renewed

  1. Denise says:

    “The ASH shall be given the responsibility to coordinate and monitor the implementation of those recommendations adopted by the Secretary.”

    This is interesting and as you say, potentially beneficial to us, IF the Secretary approves CFSAC recommendations.
    Most of the CFSAC recommendations seem to be about things for particular agencies to do, not things HHS should do.
    How much oversight would HHS (via ASH) provide to work being done within an HHS agency?
    How much oversight authority would ASH have over projects being done by Social Security, DoD or Department of Veteran Affairs which are not within HHS?

    FWIW – I did a quick check of other HHS advisory committee charters and none of the others have a similar phrase. (Though the National Vaccine Advisory Committee charter reports to the Assistant Sec of Health who is the Director of the National Vaccine Program.)

  2. John Gabor says:

    The changes are just words. History has shown us that the words of the charter mean little. The intent of the words has more often than not been completely ignored. My faith in the CFSAC is at zero and will only change when the actions by the federal officers and the HHS Secretary line with the intent of the Charter and pay more than mere lip service to ME patients.

  3. Julia Hugo Rachel says:

    DoD coming on board is crucial to this CFSAC if it’s going to continue. This committee has been a shark without teeth for too long. I expect to see changes coming in the next year.

  4. Marcie Myers says:

    Thank you again, Jennie. The DoD sounds interesting. I’d like to hear more from viral experts. Wonder if the HHV6 Foundation or Dr. Montoya would take a committee position…. Marcie

    • Denise says:

      Dr Montoya is on the CFSAC. (His term expires in 2018.)

      Given the number of vacancies on the CFSAC, and the number of recent nominees (from the most recent request for nominations), it is likely that there will be another request for nominations before the end of the calendar year (or sooner).
      Typically nominees have to submit a letter of willingness to serve – in part so that people aren’t nominated without their knowledge.

  5. Janelle says:

    When I was looking to see how many Centers of Excellence was typical in other disease, especially federally funded ones, I found that the VA funds the MS centers, and the Army and other military arms fund centers for other diseases. In addition to, as you said, the DoD generally funding medical research. So I’m hopeful about these additions.

    Particularly adding patient representatives is good like you said.

    And deleting CMS is perplexing like you said. We need so many social services that we typically do not get.

  6. kathy d. says:

    Thank you for keeping us updated. I would be in an information fog without your blog about what the federal government is or isn’t doing about ME/CFS.

    I’m not so sure about the Depts of Veterans Affairs and Defense being on the CFSAC, whether that’s good or not. The Gulf War Syndrome in veterans didn’t turn out well for those who are ill. And I have other qualms about the DOD and their motives.

    But we’ll see what happens.

  7. Carollynn says:

    Thank you for keeping us informed. The patients among us who are also MDs could be ideal additions to CFSAC. I just read an article about PEM from a 2014 SMCI newsletter written by Dr. Larry Baldwin, an MD, former marathon runner, who has had ME for 20 years. He calls it PED, post-exertional debility. Are you familiar with him from any committees or boards?

  8. Tamesin says:

    Sorry — it’s not clear to me what AHS stands for?

  9. Tamesin says:

    I mean, it’s not clear what ASH stands for — Assistant Secretary of Health? Thanks.

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