Monday, November 25, 2013

Move along, nothing to see here

Jennie Spotila, ME/CFS Advocate, posted this piece on her blog, Occupy CFS, today. (Reprinted with permission) For those who have been wondering whatever happened to the request for an investigation into the intimidation of CFSAC members who sought to represent patient interests, the answer has finally come. And the answer is ... 
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Nothing to See Here

By JennieSpotila, Occupy CFS

After more than four months, Assistant Secretary Dr. Howard Koh has finally responded to our request for an investigation into the allegations that Dr. Nancy Lee attempted to intimidate at least two voting members of the CFS Advisory Committee. His response boils down to something along the lines of, “OK people, move along, nothing to see here.” In fact, his letter is so dismissive of the allegations and so vague on what he’s done about it, that it barely qualifies as a response at all.

Quick Review of The Facts

At the May 2013 CFSAC meeting, Eileen Holderman and Dr. Mary Ann Fletcher said that they had been intimidated by Dr. Nancy Lee and threatened with removal from the Committee for expressing their views. They said a third CFSAC member had also been intimidated.

On June 12, 2013, forty-six organizations and advocates wrote to the General Counsel and requested that he investigate the allegations.

On June 21st, the matter was referred to Assistant Secretary Koh. On August 22nd and September 20th, we wrote to Dr. Koh and requested an update on the investigation. We received no response or acknowledgement of our requests.

A Non-Responsive Response

In an letter to Mary Dimmock dated October 31st (but not received by her until November 7th), Dr. Koh finally responded. You can see the full letter here, but I’ll parse the salient points for you:
"The concerns that have been expressed by the members will be taken into consideration as the Committee moves forward in working to accomplish its mission."
This makes no sense at all. Eileen Holderman and Dr. Fletcher did not express “concerns.” A concern is something along the lines of I’m-concerned-that-we-don’t-get-meeting-materials-in-advance. That’s a concern that can be “taken into consideration.” Holderman and Fletcher made allegations of improper conduct by the Designated Federal Officer of the Committee. That’s more than a concern. But Koh doesn’t even acknowledge the nature of the allegations. Nor does he describe what he did to investigate them.
"However, it is important to understand that the Designated Federal Officer for CFSAC, Dr. Nancy C. Lee, has authority to engage in private conversations with individual members of CFSAC."
I am not aware of anyone disputing that Dr. Lee can talk to individual members of CFSAC. The allegations were not about the propriety of Dr. Lee talking to CFSAC members. The allegations were about what she said.  This is what we asked the General Counsel to investigate: Did Dr. Lee tell one or more members of CFSAC that he or she could be removed from the Committee for expressing a point of view? That is the question that must be answered.
"These discussions may be confidential in nature . . ."
Um, okay. As far as I am aware, CFSAC doesn’t deal in matters of national security. They don’t receive confidential corporate documents the way members of FDA advisory committees do. I have no idea what’s so hush hush about it. But even if I accept the proposition that certain discussions are confidential, I hear something a bit ominous in this comment from Dr. Koh. By telling us that those discussions might be confidential, is he saying that Holderman and Fletcher have done something wrong in making their allegations public? Is he actually claiming that they are not permitted to disclose conversations that, at least in their opinion, represent improper behavior by a federal official? Seriously? Is he suggesting that there will be a backlash against any member who speaks out about that kind of behavior? Really?

". . . and also may involve providing information about the rules and regulations of the Federal Advisory Committee Act as they relate to managing CFSAC and the roles and responsibilities of the Committee members."

Permit me to decode this for you.  What this sentence tells me is that Dr. Koh did look into the allegations, although he is completely silent on who he spoke with or what that involved. The sentence also tells me that his conclusion is that Dr. Lee provided information to Holderman and Fletcher (and perhaps the third member too) about the rules and regulations of FACA as it applies to them, and that is the only thing Dr. Lee did.

This simply does not add up. FACA does not state that advisory committee members can be removed for expressing their points of view.  After all, the advisory committee exists for members to do precisely that. Furthermore, FACA requires that advisory committees have a balance of membership and views, so removing a member for expressing a different point of view would unbalance the committee and potentially violate FACA.

Either Fletcher and Holderman are not telling the truth about what Dr. Lee said to them, or Dr. Lee is not telling the truth about what she said to them, or there has been some kind of epic misunderstanding that Koh has failed to identify. And since Koh’s letter gives us no information about whether an investigation was conducted, who was interviewed, and what the findings were, we have no ability to unravel this mess.
"All engaged in this activity should conduct themselves in a manner that is conducive to respectful and candid discussions."
I think this sentence is code for: one or more people are not conducting themselves appropriately and they should knock it off. Of course, the letter does not specify who needs to knock it off. But read between the lines. He has already said that Lee behaved appropriately. So the only people left to knock it off would be the CFSAC members who complained.

Completely Unacceptable

This non-responsive response is unacceptable for so many reasons, it’s hard to know where to begin. We started with seeking advice from multiple sources, including legal, political and advocacy sources. After consultation with a variety of sources, Mary Dimmock has sent a second letter to the General Counsel of HHS. You can read the full letter here, but these are the main points:

  • Dr. Koh failed to adequately investigate and resolve the allegations.
  • Dr. Koh’s letter contains no evidence or assurance that these allegations are unfounded.
  • The failure to resolve the allegations is not at all conducive to respectful and candid discussions.
  • Public trust and confidence in the work of the Committee has been undermined and all but destroyed.
  • The public cannot trust that Committee members are free to provide honest advice to the Secretary.

The letter then renews our request, that the General Counsel and not Dr. Koh:
"investigate these allegations immediately, and establish whether any voting member of the CFSAC has been intimidated or threatened for expressing their opinions. At a minimum, your response should detail what steps were taken to investigate, your findings on the facts that support or refute the allegations, and what specific corrective action has been taken."
Will it work? I’m not certain. On the one hand, the General Counsel handed us off to Koh before. On the other, Koh’s response is so vague and the issue of public trust so significant, that the General Counsel certainly should step in and do the right thing. I think it’s vitally important to get matters like this on the public record. We are accumulating more and more evidence of a systematic pattern of ignoring our concerns, downplaying the seriousness of the situation, and flat out subversion of good government practices. There are plenty of other people who are interested in this sort of thing, even if the General Counsel isn’t.

It never ceases to amaze me. Do they think we’re stupid? Do they think that hand waving and “These aren’t the droids you’re looking for” Jedi mind tricks actually work? Or are they counting on the media or Congress or the Office of Inspector General* being completely uninterested in what’s going on? We’ll see.

Note: Remember, there is a difference between the Office of the General Counsel (which “supports the development and implementation of the Department’s programs by providing the highest quality legal services”) and the Office of Inspector General (which is “dedicated to combating fraud, waste and abuse and to improving the efficiency of HHS programs.”)

Source: Jennie Spotila, Occupy CFS, Nov 25, 2013
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