On Monday, I published a post about CFSAC violating the Federal Advisory Committee Act (“FACA”) by failing to make the the working group’s draft P2P comments available to the public prior to, or at the time of, the January 2015 CFSAC meeting.
Under section 10(b) of FACA, “the records, reports, transcripts, minutes, appendixes, working papers, drafts, studies, agenda, or other documents which were made available to or prepared for or by each advisory committee shall be available for public inspection and copying at a single location in the offices of the advisory committee or the agency to which the advisory committee reports until the advisory committee ceases to exist.” These documents must be made available no later than at the time of the meeting. When HHS had not made the draft comments available to the public for the January meeting, I requested that document, under FACA, after the meeting in a letter to Barbara James, Designated Federal Officer (“DFO”) of CFSAC at the time. I received it in March along with other documents, which is posted and analyzed in my Monday post.
In an apparent attempt to counter my FACA-violation charge, the current DFO, Dr. Nancy Lee, addressed the issue at Tuesday’s meeting:
“We are not required to send these [documents prepared for the meeting] out in advance of the meeting [other than to committee members] because they are pre-decisional. … [W]e are not required to post them on the website because they are pre-decisional.”
Dr. Lee’s excuses for HHS’s failure to comply with FACA fall flat because she is plain wrong regarding the requirements of FACA.
First of all, she seems to combine two arguments. It appears she is saying that HHS is not required to
- email the relevant documents to the public or post them on the CFSAC website in advance of the meeting nor
- disclose them at all because they are pre-decisional.
I and numerous other advocates wrote to Ms. James ahead of the meeting in January, saying that “the public should see” the document, which is exactly what FACA requires. I did not ask for the document to be emailed to me nor for it to be posted on the CFSAC website. I also never claimed that the FACA violation was the result of the failure to do so. Yet with her above statements, Dr. Lee falsely insinuated that I did when, in fact, I pointed out a FACA violation resulting from not making the document available to the public at all as required by FACA.
Regarding her second argument, Dr. Lee seems to be confusing the Freedom of Information Act (“FOIA”) and FACA. Under FOIA exemption 5, government agencies may withhold documents that are the product of the “deliberative process in governmental decision-making,” also referred to as “pre-decisional,” the term Dr. Lee used. The relevant FACA-disclosure requirements, however, are as follows:
“… FACA requires disclosure of written advisory committee documents, including predecisional materials, such as drafts, working papers and studies. The disclosure exemption available to agencies under exemption 5 of FOIA for predecisional documents and other privileged materials is narrowly limited in the context of FACA to privileged ‘inter-agency or intra-agency’ documents prepared by an agency and transmitted to an advisory committee.” [emphasis added] (Memorandum Opinion for the Assistant Attorney General Office of Legal Policy dated April 29, 1988)
In other words,
“FOIA Exemption 5 cannot be used to withhold documents reflecting an advisory committee’s internal deliberations.” (Memorandum for Committee Management Officers from James L. Dean, Director, Committee Management Secretariat, dated March 14, 2000)
The rationale is simple:
“Timely access to advisory committee records is an important element of the public access requirements of the Act. Section 10(b) of the Act provides for the contemporaneous availability of advisory committee records that, when taken in conjunction with the ability to attend committee meetings, provide a meaningful opportunity to comprehend fully the work undertaken by the advisory committee.” (see 41 C.F.R. §102-3.170)
CFSAC, as a FACA committee, is not an agency. Therefore, there is no FACA exemption for pre-decisional materials prepared within CFSAC, a sub-committee or a working group for consideration at a CFSAC meeting. Such an exemption would apply only if the materials were prepared by HHS, one of its component agencies or another federal agency.
Lastly, with respect to the working group draft documents that were discussed during the August 18-19, 2015 meeting, Dr. Lee mentioned they were “in the back of the room” and “available for anybody here for review.”
That would not appear to be FACA-compliant either because under Section 10(b) of FACA, the documents “shall be available for public inspection and copying ….” In order to gain access to a CFSAC meeting, one must be pre-registered for the meeting in order to undergo a security check in advance. Without being registered, one is not able to enter the Hubert H. Humphrey Building where the meetings take place. Therefore, “available for anybody here in the room” does not constitute being “available for public inspection” and “available for review” does not satisfy the requirement that it be “available for copying.”
In my last post, I called for a firm commitment from HHS to follow federal laws, such as FACA, going forward. Instead, Dr. Lee misinformed the committee and the public about the legal requirements under the statute, implying that no FACA violation by HHS had occurred. HHS continues to act as though the agency is above the law and it appears that HHS has no intention to be compliant in the future.
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I “attended” the meeting by telephone. It didn’t work all that well. Usually I had little idea who was talking. I could not hear the public comments given over the telephone – part of the time all I heard was dead air.
I completely missed Dr Lee’s remarks about access to materials. But maybe that was because my brain doesn’t work too well anymore.
Still, overall I am glad that I had some access to the meeting, even if it was rather limited.
I am glad you got to “go,” Jim. Although it’s s a serious assault on out health when we do.
Yes, the phone access never seems to work properly. Another violation. It just keeps going on and on it boils down to the fact that the agency doesn’t care one bit.
Jim, I had a similar experience in attending by phone both days. It was difficult, if not impossible to tell who was talking and what each speaker’s affiliation was (i.e. which government agency, etc.). The camera sometimes captured a face but not the name card on the table in front of them; in other cases speakers were not seated at the table and had no name cards.
Throughout both days the camera focused on faces more than on the PowerPoint slides, and that made following discussions of each slide all the more challenging. I understand that finding the right balance is hard but I think this could be improved.
When I gave my 3-minute statement by phone yesterday I wanted to see faces and reactions rather than the static PowerPoint slide that they show during phone commentary. The PowerPoint slide reinforced the remoteness and “disconnectedness” of the experience of calling in.
One last observation… Patients and advocated who traveled to Washington D.C. were able to comment more frequently throughout the meeting (such as during the first day’s open forum and additional opportunities on Day 2) whereas those of us who could at best attend by phone were not afforded that opportunity. This morning I wondered whether the lack of “access” afforded to phone attendees would fall under the Americans with Disabilities Act. Jeanette, any thoughts on this?
Whoops, apologies, ME-brain strikes again. I attended via web conference. I cannot even imagine what it was like to follow the discussion by phone. It was tough enough by web conference. Agreed, doing so consumed way too much energy and now I’m paying for it.
It’s really, really tough, I know 😦
Those are all good points, Sharon! Thanks for taking the time to list these items.
Re focusing on faces vs. slides, I think it would be best to split the screen.
Re a possible ADA violation, by body and brain are too fried for another legal analysis at the moment. But I see absolutely no reason not to open up the open-forum session to people online and on the phone. This goes to the point Ed made. We wouldn’t have to always beat them over the head with the law if they were only sincere in their proclaimed desire to promote public participation, as was the intent of FACA.
The split screen idea is great – beauty in practicality. If (when) I can get it together to write to someone I will include that request.
I send my sincere thanks to you, Ed, and everyone who comments on your blog. I draw tremendous strength, drive and inspiration from all of you. No worries about the ADA issue at all; was just thinking out loud before my thoughts dissolve into the ether 🙂
Thank you so much for your kind words, Sharon. It really does mean a lot.
Exactly. And since they are not sincere, thank you so much for being on top of all of this unfun stuff from these agencies that unfortunately “have to be watched like a hawk” in the words of one of the ME lobbyists from long ago.
Jeannette and sharon, a confession. Mary d and Charmin were commenting as members of the working group and I think maybe the same was true of Bob m. I talked on things where omissions or errors were just plain making me crazy so I got up and stood by the working group. Table until my opening my mouth became inevitable.I can’t say my extra comments were allowed per second
More like I just inflicted myself, which telephone doesn’t facilitate.
Patient advocate working group members were Mary Dimmock, Claudia Goodell and Charmian Proskauer.
I want to make sure to clarify that I have no issue with advocates getting speaking time. That’s a good thing. But there should be no advantage given to those who live close enough, are healthy enough or financially well-off enough to attend in person because all of these things are typically tied to our disability.
PS: Some patients get the expenses for their advocacy trips sponsored. So, personal financial sacrifices are not required for everybody.
It’s sad, pathetic really, that HHS even tries to hide behind misconstrued interpretations of the law to avoid making the CFSAC meetings meaningful for patients and others. One might hope that an agency avowedly dedicated to helping patients and finding cures for their disease would go out of its way to make the CFSAC meetings most useful and supplying to the public before the meeting all the relevant information considered at the meeting and in a format that is most helpful and user-friendly. Instead we see an antagonistic, hide-the-ball stance seeking to do the very minimum required by law to give relevant information to patients and the public. This is not at all surprising given the stance the agency took in Jeannette’s FOIA litigation, for which they were heavily criticized by the Judge and forced to pay all of Jeannette’s legal fees, over $139,000, due to their intransigence and other failings.
Very well said! Thank you, Ed!
Jeanette you are doing brilliant work
Please don’t give up on us patients
Really insults our intelligence. They obviously think cognitively challenged is the same as stupid and gullible. On the flip side, I am convinced they are 50% manipulative and 50% mentally challenged and incompetent.
The meetings were exciting when Wanda Jones was in charge. Even if I were back in Delaware (I’m pretty far from there now!) I woudn’t go any more, because I get too worked up. The disrespect is mindboggling. A throwback to the days of Straus and Reeves.
I understand that NINDS suggested that Ron Davis try NIAID – ha! Tony Fauci still thinks Straus walked on water.
PS – will the meeting be available online after-the-fact? They used to be. It’s easier if I don’t have to take it in all at once.
I believe it should be available at some point in the future on the CFSAC website, http://www.hhs.gov/advcomcfs/meetings/.
More NONsense coming from the DFO, Nancy Lee–CFSAC–in the end–is about doing the job that is intended and called for by HHS and ‘to please HHS’ — their ‘work’ is certainly NOT in the interests of M.E. patients.
TPTB allow this horrid disease to continue and continue to spread — UNchecked–UNtreated — stealing the lives away from children and teens too. Once again — how supremely SHAMEful. WHAT a nightmare for so many to merely ‘exist’ in . . . and some just barely hanging on to that ‘mere existence’ at that.
CFSAC is not operating in the best interests of patients — those on the committee genuinely wanting to help M.E. patients are caught up in the politics and have their hands tied — round and round the mulberry bush we go — the seriousness and science of M.E. lost and buried in the ONgoing game of politics.
You’d think Lee’d be smart enough to NOT argue law with not one but TWO lawyers of high caliber.
And apparently you’ve got them spooked if the documents in your last post are any indication. I don’t think I’ve seen any advocate pointed out as exclusively when discussing uppity patients 😉
I haven’t even bothered watching the last 2 CFSAC meetings as they crash me BAD and I’m dizzy from the endless talking in circles. The CFSAC is an old, blind , toothless hound dog that just won’t hunt, IMO.
I DO think it’s a good place for that opening shot across the bow, however. Thanks for taking such careful aim.
My sincere thanks Jeannette for all you and Ed are doing. This must take a real toll on your energiesand It does not go unrecognized.
Just want to clarify that the effect on energy is really not the biggest problem. It’s the effect on overall health that’s the real impact.
Thank you very much, Jeannette, for clarifying these issues for us. Had you not posted this, many of us wouldn’t have known we were being mislead. It is heartbreaking seeing what a game this is to them.
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