ME community members were caught off guard when the proposed 2016 Senate appropriations bill zeroed out CDC funding for CFS research. Several advocates scrambled to address this and their efforts to be heard appear to have paid off.
But scrambling is not something ME advocates can, or should do. Health- and resource- wise we can’t afford to scramble because it damages our health. Strategic, coordinated and planned approaches would enable less intensive expenditure of resources and allow us to take a measured approach to concerns.
To avoid last minute scrambling, here are a few CFSAC-related things advocates might want to work on.
CFSAC VOTING MEMBERS
In 2016 the terms of 4 CFSAC voting members (Casillas, Collier, Corbin and Fletcher) will expire. FOUR (!) new members out of a total of 11 voting members, means that more than one-third of the committee members will be replaced. That’s a large portion of the voting membership.
The HHS vetting and approval process for advisory committee members is quite lengthy, which means that the request for nominations will probably appear soon. Typically there’s about a 30 day window from the published announcement to the submission deadline, so giving thought to this right away, allows time for recruiting highly qualified nominees and allows for the development and submission of nomination packets. (For reference, the most recent notice was September 2013. The process may be different this time.)
Required expertise (stipulated in the CFSAC charter)
“Of the eleven members, seven shall be biomedical research scientists with demonstrated expertise in biomedical research applicable to ME/CFS; four 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 ME/CFS.”
Of the CFSAC members whose terms end in 2016 –
Mary Ann Fletcher is a biomedical researcher,
Adrian Casillas and Lisa Corbin are healthcare professionals,
Rebecca Collier is a nurse associated with insurance (I believe).
Additional considerations
The CFSAC has a lot of work to do and the learning curve for advisory committee members is steep under the best of circumstances.
In order to best serve the community, all committee members should be highly qualified and knowledgeable individuals who are fully engaged with the work of the CFSAC.
Because of the steep learning curve and the important work that the CFSAC needs to do, ALL CFSAC nominees/members should be well versed in the science, history and politics surrounding this neuroimmune disease, so that from their first day on the committee they all work effectively.
Think about which category of charter-stipulated-expertise the nominees meet. (The categories are – biomedical research related to ME/cfs, expertise in healthcare, insurance, voluntary organizations serving people with ME/cfs.)
It might also be worth examining the current roster to see if there are additional gaps in charter-required expertise.
Which qualifications make for the most effective CFSAC members?
Before initiating the nomination process for anyone, remember to verify their willingness to serve. (In past years, nominees have had to submit letters stating their willingness to serve.)
We have no way of knowing which nominees HHS will appoint to the CFSAC, but ensuring that HHS receives nominations of numerous highly qualified individuals, increases the chances that voting members of the CFSAC will be appropriately qualified individuals who, from the start, can work diligently and effectively on matters related to ME.
The CFSAC is supposed to be our venue for getting things on the public record.
The CFSAC charter is up for renewal every two years which means that in 2016 the CFSAC charter is up for renewal.
Renewal is not automatic/guaranteed, so it is worth devoting time to the who, what, when, why and where of charters and working towards getting it renewed.
Since ensuring renewal is likely to be a protracted process, it could be helpful for a team of people to share this work.
Additional considerations
Are there charter changes that would be beneficial?
Would it be appropriate to examine the charters of other HHS advisory committees to see if they include language/provisions that would strengthen the CFSAC charter?
Charter designation
Would it be more appropriate if the CFSAC were a Presidential, or statutorily mandated advisory committee as opposed to being a discretionary advisory committee?
If so, who will follow through to make it happen?
Using unified talking points when working on charter-related issues will help ensure that TPTB aren’t confused by differing messages.
ENGAGEMENT
CFSAC meetings take place (at most) twice a year. Is that sufficient to adequately address material from the working groups, other related concerns within HHS and SSA, etc.?
The current DFO has said she does not have sufficient time to act as DFO and do “her other job”. Will the new DFO be wholly devoted to ME matters?
Is the engagement model we have with the CFSAC and HHS satisfactory? Is the level of openness and transparency in communications and actions satisfactory?
Does HHS take this neuroimmune disease into consideration when developing strategies, policies and/or disseminating information?
Do we need someone at HHS (at a prominent level) who can provide continuity between meetings and outside of working group activities and who can ensure that ME concerns are taken into consideration across all HHS activities?
Would it be useful to have someone more engaged with the community and the activities of HHS to progress matters related to ME?
The IOM report used the model of the HIV Czar and recommended a Czar for this disease. Would this improve HHS’ level of engagement regarding this disease?
If the community is not satisfied with our current engagement model with the CFSAC and HHS, what changes would best serve us and how will we ensure that they come about?
We must be heard
Published June 24, 2014 Uncategorized Leave a CommentTags: advocacy, CFSAC, chronic fatigue syndrome, committee members, Designated Federal Officer, Nancy Lee (DFO), public comment
Advocates have the opportunity to submit public comment for the Chronic Fatigue Syndrome Advisory Committee (CFSAC) meetings. However, if the committee members do not have access to public comment, they cannot use it to inform the advice and recommendations provided to the Secretary of Health and Human Services which is the purpose of the committee.
For the June 2014 CFSAC meeting, public comment was not provided to committee members so Denise Lopez-Majano sent the following letter to Dr. Nancy Lee, Designated Federal Official (DFO) of the Chronic Fatigue Syndrome Advisory Committee (CFSAC):
“Dear Dr. Lee,
I am writing to request that written comment always be provided to CFSAC members (including ex-officios, non-voting liaisons) along with all meeting materials.
It has come to my attention that written public comment was not included in the June 2014 CFSAC committee member’s binders. During the meeting it was indicated that submitted written comment was only available at the back of the meeting room. This means that the unless public comment was also provided orally, it was not accessible to committee members, nor could it be readily referred to by them at other times.
In order for CFSAC to correctly address (among other things) concerns about quality of life, and development and implementation of programs to inform healthcare professionals (as detailed in the CFSAC charter), CFSAC members must be knowledgeable about and aware of the realities patients, caregivers and others regularly face. Public comment often illustrates points that committee members/agencies and others may not be aware of. Therefore it is vital that CFSAC members have ready access to it because public comment helps CFSAC correctly advise and make recommendations to the Secretary about these and other issues.
In addition, some advocates/patients can only provide written public comment. As a result, if their public comment is not provided to committee members, not only is their voice not heard at all, but there is no opportunity for their input to inform CFSAC about matters that can result in CFSAC advice and recommendations to the Secretary.
Just as presentations made to the CFSAC help inform the committee’s advice and recommendations, so too does the public comment provided by stakeholders, who after all, are among those most knowledgeable about life with this horrid illness.
I urge you to ensure that submitted written comment is provided along with all other materials for each meeting.”
If you would like to send a similar email to Dr. Lee, her email address is: nancy dot lee at hhs dot gov
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