The next CFSAC meeting, which was supposed to be held earlier this month, but got postponed to December, brings with it so many changes that one has to wonder: Is this the beginning of the end for CFSAC, maybe not an all-bad outcome? For years, the consensus has been—due to the ineffectiveness of the committee and the recent change in tone and infantilizing treatment of “inconvenient” committee members—that this committee has served no other purpose than to build a record for judgment day. But that’s an expensive record at about $230,000 of taxpayer money yearly.
The most concerning change is the format of the meeting. It went from being two full days of in-person meetings with an unlimited number of people able to watch on their computers at home to two half-day web meetings. People can “attend” either via phone or via the Internet. The web meeting, allowing people to watch the video-comment submissions, is limited to 500 web participants. When I say “web,” I really mean mostly audio, because “there will be no live video,” just some video comments from patients. According to Dr. Leonard Jason’s research, there are nearly 1 million Americans afflicted with this disease. So, only 0.05% of the patient population is allowed to participate in the “webinar.” Restricting the number of participants that much, does that even still qualify as a public meeting, as is required by federal law?
Here is the official reason we were given via the CFSAC listserv on September 12, 2013 for holding a web meeting instead of an in-person meeting: “Because of budget constraints and the government-wide Sequestration, federal advisory committees have been told to conduct at least some of their meetings as webinars or use other similar formats.” Ok, so it’s a financial issue. Ok, maybe. But even if other advisory committees have substituted their in-person meetings with webinars—something I would be extremely interested to hear about—whoever thought of saving money at this particular meeting at this pivotal time of this disease, which costs the taxpayer billions every year, seems to have either really bad judgment, no respect for patients or an agenda that we all can speculate about. Or maybe all of the above.
First off, at the last meeting, two brave committee members, Eileen Holderman and Dr. Mary Ann Fletcher stated on the record that they have been intimidated by the designated federal official, Dr. Nancy Lee, a very serious charge. An official investigation into the matter is under way. These charges were brought to light in the middle of the discussion of the case definition, which is at the center of the crucial IOM debate now. One can’t help but think that Dr. Lee’s trying to avoid another encounter with Eileen played a role in holding this particular meeting via the Internet. Eileen’s term is up in May of next year. This is her last CFSAC meeting as a committee member. It seems highly unlikely that this is a coincidence.
Secondly, and in the big scheme of things, more importantly, the IOM/HHS-contract issue—arguably the most important issue this disease population has ever faced— has been reaching its climax. Patients are as involved in the politics surrounding this disease as they have ever been. Am I the only one who feels that this was a convenient time to squash any potential big patient demonstrations surrounding an in-person meeting?
And why the change from two full-day to two half-day meetings? Clearly it’s not cost. There would be no significant additional costs associated with having a few more hours of web meeting on both days. Right at the time when so many patients have so much to say about the IOM contract, an issue, which by the way, got allotted a whooping 30 minutes on the agenda. These 30 minutes, by the way, are assigned to Dr. Lee alone; no committee-member discussion is planned, which is unfathomable given the likely grave outcome of the IOM Contract if not stopped. There is not even an attempt to pretend anymore, it seems.
The other big change seems to be the way of submitting public comments. In the past, one could submit written comments and still comment either via phone or in person. Now, when you go to the registration website, you get three choices in the pull-down menu to deliver public comments: by phone, in writing or via pre-recorded video (video instead of in-person due to the meeting being held over the web). It seems that there is no option of submitting written comments in addition to phone or video comments. This not insignificant change is disguised with the following comment: “You are no longer required to submit a written copy of your testimony as in past years unless you wish to have it included in the public record.” But what if I want to provide written comments in addition to phone or video comments?! After all, comments delivered over the phone do not become part of the official record of the meeting. Is this really an oversight?
Let’s give the government the benefit of the doubt for a second and assume that this is just a website-design error and the outcome was unintentional. How do we find out? Well, not from CFSAC: “[T]he CFSAC mailbox will not respond to questions about specific public comment requests. These requests and/or inquiries should be directed to CFSACDec2013@seamoncorporation.com.” That is exactly what I did. I sent an email to Seamon Corporation asking if this is an intentional change and if so, what the reasoning is. I am not holding my breath for a reply. For one thing, Seamon Corporation is unlikely to be privy to, or free to talk about, government policy as it relates to its advisory committees. But CFSAC itself will not answer any questions regarding public comments, just like Dr. Lee (CFSAC DFO) and Dr. Marschall (CFSAC Chair) never replied to my email inquiring about the authorship of the IOM FAQs. It’s a catch 22. That’s why I am bringing it up here.
Now, about the written or video comments. They are due this coming Friday, November 29, 2013, a day after Thanksgiving! Patients keep stressing how hard the holidays are for them—getting ready for them and recovering from them—due to this crippling disease. I guess HHS hasn’t listened to our narratives for the past 10 years, as we painstakingly described the hardships of even the pleasures of life, such as the holidays.
The other paradox is that people who submit a video or who wish to give comments over the phone will not be notified before December 4, 2013 whether they will get accommodated. Unfortunately, that is five days after the deadline for written comments. So, if your preference is to give comments over the phone or by video—as is mine—but you are concerned about receiving a time slot—as am I—you really have no other choice but to settle for written comments when you register—as did I. For the record, I would strongly prefer to provide written comments AND comments via phone or video, but I am NOT given that option by the registration website. And just like that, another way for patients to voice their opinions and concerns has been stripped from us without as much as the hint of an explanation.