CFSAC Testimony from Amy Squires

Amy Squires is my dear friend, and serves as Chairman of the Board of Directors of the CFIDS Association. She has given me permission to post the comments she made to the CFS Advisory Committee today.

My name is Amy Squires and I testify today as a taxpayer and an individual who has been around ME/CFS since 1994, when my dearest friend became disabled by the illness.  My sister then got sick about 8 years ago.  I bring to my view of the illness a commitment to good government:  I have spent 20 years of my career working with federal, state, and local agencies because I believe the public mission is the most important and the hardest to do well.

I’ve attended a number of CFSAC meetings since 2005.  I appreciate the service of each of you individually on the Committee, and I want to be encouraged by the comments this morning from Drs. Jones and Marshall this morning about changes in the Committee’s practices, but I am skeptical.  I can’t say that this Committee strengthens my faith in government.  When you publish an agenda just 2 weeks before the meeting, it suggests that you’re just now getting around to thinking about the work you were supposed to have been doing since the last meeting.  It suggests that these meetings are merely a procedural exercise to check the box.  When you develop a high priority recommendations list and publish it without the public input required by the Federal Advisory Committee Act, it conveys how much regard you hold for public engagement generally and for engagement with the patient community specifically.  When you get called to the carpet for violating FACA and have to revisit the list and then allot less than 30 minutes for Committee discussion, it suggests that the high priority recommendations don’t warrant much priority at all—especially when the topic didn’t even appear on the original agenda published for the meeting.  When the list you’ll be deliberating probably is the one you originally published and then revoked—which was current as of the end of 2011—we begin to get a sense of how important the Committee’s recommendations are, since recommendations from 2012, like the case definition work, are omitted.  I really hope the Committee members are on top of this, since the CFSAC leadership and staff don’t appear to be.

[In fairness, I want to acknowledge some apparent improvements.  Publishing the agenda two weeks in advance is, actually, an improvement over past years.  Also, I am grateful that I no longer have to submit testimony before seeing an agenda and before finding out if I’ve even gotten a slot to testify—it felt like a bit of a litmus test and was also quite inconvenient.  Finally, I’m interested in the addition of Q&A to this meeting and am hopeful that this proves a constructive interaction between the Committee and the patient community.]

And what really gets me, given my experience with this Committee, are the recent examples of how valuable constructive engagement with the patient community can be.  The FDA has set brilliant examples through the PDUFA meeting in November and then the Drug Development meeting for ME/CFS in late April.  FDA restores my faith in government.  I saw officials who listened closely to the patients, asked questions to be sure they understood the patient perspective, and diligently took notes throughout the discussion.  We heard panelist after panelist comment on the importance of patient engagement to good public health policy and outcomes—on symptom management priority, end-points, risk tolerance and health trade-offs.  The expression by several of the federal agency staff that they learned more from the patients on the first day of the FDA meeting than they had sitting through hours of open testimony at CFSAC meetings says something about the nature of the dialogue that’s been fostered in this forum and underscores the need for change.

So given everything that the rest of HHS has under way, I would ask how the patient community will be engaged to ensure maximum value and impact of the work and the resources being invested, particularly given growing fiscal constraints. For example:

• The CDC is conducting a multi-site study with 7 ME/CFS specialty clinics.  How can CDC augment this data collection with direct patient contact outside those practices to make sure that the study takes into account the perspective and experience of ME/CFS patients who don’t have access to specialty care (which, based on the statistics, is the vast majority of the ME/CFS patient community)?
• NIH reports that it is beginning to look at case definition through the evidence-based program of the Office of Disease Prevention.  How does NIH plan to solicit information from the patient community for this project?
• What can ARHQ do to represent the patient voice in quality and care guidelines?

My bottom line is:  constructive engagement with the patient community helps make good public health policy, which ostensibly is why you all are here.  The April FDA meeting demonstrated that the ME/CFS patient community can mobilize productively and constructively in dialogue with federal officials.  I hope this Committee is interested in fostering a similar approach, in its own operations and across the rest of HHS.

Thank you for considering these comments.