CFSAC Specific Recommendations

See Part One – Tangled Web

The CFSAC Specific category contains eleven recommendations regarding the Committee’s own operation. See pages 16 – 18 of the Recommendations Chart (pdf link). However, one recommendation concerns the case definition so I will cover that in the next post. The rest are a bit of a mixed bag, but they break out into a few topics and most are listed as complete.

Ex officio Membership

The ex officio members of the CFSAC are non-voting representatives from many HHS agencies. These representatives are important to the Committee’s work because they can provide information from their agencies and offer input into discussion that shapes future recommendations. The Committee has recommended adding ex officios on two occasions. In September 2004, the Committee recommended adding representatives from Department of Defense, Department of Veterans Affairs, Agency for Healthcare and Research Quality (within HHS), and National Institute of Disability and Rehabilitation Research (within Department of Education). In November 2007, the Committee again recommended adding a representative from AHRQ.

When the Committee was rechartered in 2010, a representative was added from AHRQ and another from the Centers for Medicare & Medicaid Services. Both recommendations are listed as complete. I’m not certain, but I think that since CFSAC is an HHS advisory committee, the Secretary cannot appoint ex officios from other Departments, so I agree with the “complete” designation.

Info Sharing

Several recommendations relate to information that the Committee wanted to obtain or share (and the argument could be made that these would be better classified in the other subject areas). The Committee asked for third party insurance companies to provide information on coverage for diagnosis, treatments and rehabilitation (May 2007), but there is no action reported. The Committee also asked for reports from the agencies on the resources available for provider education (May 2007). Progress on that recommendation is listed as ongoing because ex officios give reports at each meeting, but I think it is unclear whether that fulfills the intent of the recommendation.

Anticipating the appointment of a new Secretary, the Committee requested that the transition report include information on CFS and a summary of the CFSAC’s recommendations, and the Chart lists this as completed (October 2008). Finally, the CFSAC recommended developing a list of ME/CFS organizations and criteria for posting links to the CFSAC’s website, and ongoing progress is reported (June 2012).

Position Taking

These recommendations are not really CFSAC-related, but more accurately described as positions or orientations that HHS should adopt. CFSAC recommended that HHS solicit the cooperation of the Department of Education on issues relating to pediatric CFS (October 2008). The Chart indicates that this was completed after a representative addressed the Committee in May 2009.  I disagree that this makes the recommendation complete, but the wording is so vague that it’s hard to identify the action still needed.

CFSAC also recommended that their expertise be engaged as HHS develops policy and agency responses to ME/CFS issues (October 2010). The Chart says progress is ongoing, and that members participated in planning the NIH State of the Knowledge meeting and reviewing CDC’s website content. However, the minutes of the meeting indicate that this is not the type of engagement the Committee had in mind. The intent was for CFSAC members to be participants in the process of health care reform as it related to CFS. (CFSAC Minutes, October 14, 2010, p. 56-57).

Committee Ops

Two recommendations address pure operations issues for the Committee. First, the Committee wanted to explore the possibility of adding a web-based meeting to conduct CFSAC business (May 2010). The Chart marks this as complete, noting that webinars could be used between meetings and that the public meetings are video streamed online. Holding a meeting exclusively online would still have to comply with FACA and Sunshine law requirements, so that could be challenging, and the Committee has not pursued it further.

Second, the Committee wanted to clarify the process of transmitting the recommendations to the Secretary and receiving communication back (November 2011). This recommendation was included on the High Priority list. It is marked complete, as Assistant Secretary Koh addressed it in his August 2012 letter to the Committee (pdf link).

Keep In Mind

Of these ten recommendations, most are listed as at least partially completed. The Ex Officio and Committee Ops recommendations are all complete. Regarding Info Sharing, the transition report is complete, and the list of ME/CFS organizations is progressing. The requests for reports on agency resources for provider education might be considered complete (depending on the Committee’s intent), but the request for information from third party insurers was not addressed. Finally, the recommendations on cooperation with the Department of Education and engagement of the CFSAC members as experts in HHS efforts are listed as complete, but I do not believe this is accurate. However, both of the recommendations are sufficiently vague that the original intentions are unclear and as a result, progress is hard to assess.

Go to Part Three – Care and Services Recommendations

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