CFSAC Basic Facts

The first 2012 meeting of the CFS Advisory Committee is June 13-14th. While the patient community focuses on the opportunity for public comment, I think it is also important to understand how the committee functions. We have to understand the context of committee operations in order to assess its success.

Federal advisory committees derive their authority from one of three sources. First, Congress can create advisory committees through legislation, as they did with the Advisory Council on Alzheimer’s Research, Care, and Services. These committees have a statutory mandate to provide advice, usually in the context of a specific task like consulting with the Department of Health and Human Services on a long range plan for addressing treatment and care issues for Alzheimer’s patients and their families. Second, the President can create an advisory committee, as was done with the Presidential Commission for the Study of Bioethical Issues. Finally, a Department Secretary can create an advisory committee and this is the case with the CFS Advisory Committee.

Advisory committees are governed by the Federal Advisory Committee Act (FACA) and its associated regulations, which set forth all types of rules for the operation of committees. These include the requirements for charters, record keeping, public access, and more. There is pending legislation in Congress that would revise the FACA, but it seems unlikely to pass.

The CFS Advisory Committee has both a charter and a set of by-laws. The charter must be renewed every two years, and the current charter will expire on September 5th of this year. Some years, renewal has required advocacy efforts to secure, but that does not seem to have been the case in more recent years. The purpose of CFSAC is advise the Secretary of DHHS on issues related to CFS, specifically:

(1) the current state of knowledge and research and the relevant gaps in knowledge and research about the epidemiology, etiologies, biomarkers and risk factors relating to CFS, and identifying potential opportunities in these areas; (2) impact and implications of current and proposed diagnosis and treatment methods for CFS; (3) development and implementation of programs to inform the public, health care professionals, and the biomedical academic and research communities about CFS advances; and (4) partnering to improve-the quality of life of CFS patients.

The CFSAC does not advise the Secretary directly. The committee’s recommendations are conveyed through the Assistant Secretary for Health, Dr. Howard Koh. Sometimes the person in the Assistant Secretary role has attended portions of CFSAC meetings, as is the case with Dr. Koh, but others have not interfaced with the committee at all. The DHHS employee most visible is the Designated Federal Officer (DFO) for the committee, Dr. Nancy Lee. The DFO is responsible for the operation of the committee, and has extraordinary influence over how well the committee does its job. Dr. Lee’s predecessor in this role, Dr. Wanda Jones, helped the CFSAC make great strides through live webcasting of the meetings, ensuring the committee’s recommendations were actually conveyed to the Assistant Secretary, and providing more transparency about the status of the recommendations.

Membership of the CFSAC falls into two categories, ex officio and external appointees. There are seven ex officio members representing agencies within DHHS. These members are non-voting, but attend each meeting and provide updates on their agencies’ activities on CFS. The seven represented agencies are the Agency for Healthcare Research and Quality (AHRQ), Centers for Disease Control and Prevention (CDC), Centers for Medicare and Medicaid Services (CMS), Food and Drug Administration (FDA), Health Resources and Services Administration (HRSA), National Institutes of Health (NIH), and Social Security Administration (SSA).

There are eleven external members of the CFSAC, appointed by the Secretary of DHHS or her designee. Nominations are invited from the general public, but the selection process itself is not public. Seven members “shall be biomedical research scientists with demonstrated expertise in biomedical research applicable to CFS” and four members “shall be individuals with expertise in health care delivery, private health care services or insurers, or voluntary organizations concerned with the problems of individuals with CFS.” The full roster of the committee is posted on the CFSAC website, including the expiration dates of the appointed members’ terms.

The committee meets two times per year in Washington, DC. Usually, the meetings are two days long, and cover a range of topics. There is always time for public comment, although people do have to sign up in advance. The webcasting has made it possible for hundreds of people to observe these meetings, and I have found it quite instructive. The agenda for next week’s meeting has been posted, and the meeting will take place on June 13th and 14th. You do not have to sign up in advance to be able to watch the meeting online, and I hope you will be able to do so. DHHS does track the number of people watching these meetings. The last meeting in October 2011 was not videocast, and this attracted significant criticism from the community. A large audience will show DHHS that it’s important to us and worth the expense for them.

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One Response to CFSAC Basic Facts

  1. Justin Reilly says:

    The fact that only four spots are reserved for stakeholders (including insurers) who are not either government officials or research scientists seems very clearly to me to be an attempt to reduce practical viewpoints from the committee, especially from clinicians and patients. Research scientists are easily influenced to avoid controversy and practical concerns.

    Jennie, I must ask again that you use some other nomenclature than “CFS.” I suggest ME. Every time a respected advocate such as yourself says “CFS” it furthers that meme which does us so much harm. There will never be changes we need if we don’t first implement them ourselves.

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