[Update: Please email Dr. Lee with copies to Sebelius, Koh and Jones requesting that the meeting be rescheduled as a two full-day, in-person meeting:
Even the weather gods don’t agree with HHS’s cowardly decision to hold its next CFSAC meeting as basically a teleconference over only two half days, instead of the regular two full days. I say “teleconference” because no live video of the committee members will be streamed and even video testimony of the public that is allowed for the first time will only be streamed as audio during the meeting. The latter is so much beyond bizarre that I at first didn’t believe it when I heard it. Which reasonable person in their right mind would assume that the video portion of video testimony (!) will be excluded? The reason given: The webinar platform is not compatible with playing videos. Why in the world was this webinar platform chosen then? And yes, I did submit video testimony (for a number of strategic reasons).
Moreoever, no other HHS advisory committee seems to have switched to the “webinar” format. They all still seem to be holding regular in-person meetings. It’s only the lazies and crazies, ME patients, who don’t deserve even that little anymore. The reasons cited are, of course, financial, which is crazy-makingly disingenuous because HHS just blew $1 million dollars on its contract with the IOM that nobody wants. It’s official: We’ve stepped through the HHS looking glass!
So, the listserv message we received this morning from Dr. Nancy Lee, Federal Designated Officer of CFSAC, let us know that today’s part of the meeting is canceled due to a snowstorm in the DC area. Apparently, all federal offices are closed today. Fair enough. But the following isn’t. According to Dr. Lee, the meeting is on for tomorrow, weather permitting, and will be condensed into one day. All the patients’ testimony scheduled for today is canceled. Not only were there many patients who would have loved to give public comments, but were rejected because—news flash—that’s what happens when you slash the meeting time by more than a third compared to prior meetings! You don’t have enough time for public comments. But on top of it, now the patients who were “chosen” for Tuesday comments, got completely disenfranchised just like that. Not by the weather, but by the government.
Here is another kicker: Even tomorrow’s public comments are cut from 5 minutes to 3 minutes. Do you know how much you can say in 3 minutes? Try it. Nothing at all. If you were to type out your comments and to read them fast, it’s less than a page. If you were to try to give the comments in an impactful, i.e., not rattled-off, manner, we are talking a couple of paragraphs. Not to mention that the pre-submitted videos are 5 minutes long. So, presumably they will be cut altogether as well. This is not a public meeting anymore. This is a disgraceful farce!
One more thought about cutting tomorrow’s testimony to 3 minutes. HHS obviously has zero understanding of the cognitive limitations of many patients. Drafting public comments is extremely challenging for most patients due to the disease. Patients are now expected to consolidate— overnight—comments that have taken them days to draft. This is the opposite of accommodating a disability. It’s making it impossible for sick patients to participate in the meeting. It’s discriminating against the disabled. By HHS, through our own federal advisory committee!
Condensing the meeting down even further than what was already planned is completely unacceptable. In the past (until May of this year), we had two 9 to 5 meetings, a total of 16 hours. If CFSAC indeed proceeds with condensing it into just tomorrow, that would be 5 hours only, less than one third of the normal duration of the meeting? This is completely unacceptable. It’s outrageous. Clearly, Dr. Lee has to reschedule the entire meeting if HHS doesn’t want to be even more blatant about the fact that it is literally impossible for the government to care any less about this patient population, which is already so painfully obvious. I know the government is trying to burry us with the IOM “study,” but let’s attempt to rescue an iota of pretense, shall we?!
And don’t even give me the the-weather-is-out-of-our-control excuse. HHS has already rescheduled the meeting once. Don’t hide behind the weather this time when it’s much more appropriate to reschedule than it was last time. The reason given for the last rescheduling was the government shutdown. Mind you, the November meeting was scheduled for about four weeks after the end of the government shutdown. Plenty of time to proceed with the meeting as planned. Postponing then was a lot less justified than it would be here.
If you think about it, CFSAC has been given a second chance here. The big elephant in the room is that the Designated Federal Officer chose to hold this meeting as a teleconference at the, by far, most critical time in this patient population’s history: the IOM “study” proceeding despite overwhelming protest by experts and patients alike, despite an unprecedented unity among experts and patients. If HHS wants to avoid appearing as egregiously disenfranchising patients more and more at mind-blowing, accelerating speed, it has no choice than to reschedule the entire meeting and to return to its prior format: a two-day in-person meeting. If it does not do so, well then it might as well just abandon CFSAC altogether. At least then we don’t have to listen to the unspoken insincerity of “We care about you. Can’t you see? We even established a federal committee for you!” anymore. A federal committee yes, but one that does not seem to be permitted to do its job in defending its recommendations made in the interest of patients to the Secretary of Health and Human Services when those recommendations get hijacked and completely twisted, like the definition recommendation to Sebelius of October 2012.
Does anybody remember the quote from Erich Mielke, head of the infamous Stasi, the East German secret service? Mielke, when confronted about the Stasi’s abuse of, and spying on, citizens after the wall came down, stuttered, “I love … But I love everybody … all people. But I love … I am here for you.” Nobody believed Mielke and nobody believes HHS anymore at this point. The difference: People laughed about Mielke. Silly old man who’d lost it and who finally couldn’t hurt anybody anymore. Nobody affected by ME is laughing here, although the government may hardly be able to believe its luck with the timing of this snowstorm. How much more are they going to escalate their hostility towards us? How much more are we letting HHS going to get away with?