Many members of the community have called out HHS for legal violations over the years, such as Dr. Mary Ann Fletcher and Ms. Eileen Holderman confronting Dr. Nancy Lee, DFO of CFSAC, for her attempted intimidation of CFSAC members by threatening to evict them from the committee for voicing their opinion. This was well documented by Jennie Spotila on her blog. Ms. Spotila also uncovered other FACA violations. I successfully sued HHS and NIH in federal court for violating FOIA and the Judge found the agencies’ conduct to be unreasonable to a degree that led him to order both agencies to pay all of my attorneys’ fees, more than $139,000. The award of attorneys’ fees is by no means a given in FOIA cases; it requires a high level of unreasonableness on the government’s part. I explained why HHS again violated FACA regarding CFSAC’s January 2015 comments to the P2P here, here and here. Many advocates have protested these and other legal violations of HHS in formal complaints and public testimony throughout decades.
It’s almost too obvious to make the point, but the government, in our case, HHS, has a mandate to follow the law. The rules exist for important reasons, in the case of FACA, to protect the integrity of the process through transparency and accountability. Similarly, FOIA is meant to facilitate open government. Those are important constructs that, together with other aspects of our legal system, build the foundation of a principled society. They are not just technicalities that can be shoved aside or overlooked whenever it is convenient for the government. To the contrary, they represent rights of the people that are enforceable in court. It seems what we are seeing is a desensitization to legal violations due to the sheer numbers of times HHS has been violating the law, all the while acting as if nothing was wrong. But it is the duty of a citizen, especially an advocate, not to let that cloud one’s judgment and not to let HHS get away with it. A violation is a violation regardless of how many times it has been committed.
However, a few members of our community prefer to turn a blind eye when it comes to HHS’s unlawful conduct. It is possibly understandable, though not excusable, that HHS would downplay the seriousness of its actions or even misstate the law to the public, as Dr. Lee, CFSAC’s DFO, did again just last month at the latest CFSAC meeting in describing HHS’s disclosure obligations under FACA. But why would patients do it?
For a few, the answer seems to be that they are taken aback when they realize that they participated in a process that was unlawful on the part of HHS, such as a FACA violation. Instead of directing their dismay over these violations at HHS, they turn it against those of us who are holding the agency accountable. When somebody has been passionately invested in a project by volunteering a lot of time and effort, it may be natural for the initial knee-jerk reaction to be pushing back upon hearing of HHS’s misconduct. Cognitive dissonance can be quite compelling. And, of course, HHS is relentless in its denial of its violations, never mind that they are obvious. After decades of neglect and abuse by HHS, wanting to believe that things are finally different—that HHS turned over a new leaf and now has the best interest of ME patients in mind—can become a desperate need reinforcing the narrative that nothing is wrong with HHS’s actions. It’s tough to admit to oneself and others that things were not above board when one was led to believe by HHS that they were on sound legal footing and one relied on that. I get that. However, it is asking a bit much of the community to overlook these serious transgressions by HHS just to allow those who were part of the tainted process to retain their comfort level and alleviate any potential guilt. Once a well-reasoned and well-supported analysis of the law has been presented outlining the legal violations by HHS, there is no longer any plausible deniability.
Nevertheless, a shooting of the messenger, which does occur at times when accountability is demanded from HHS for the agency’s illegal actions, is crossing a line. Not only do a few patients and/or advocates praise HHS despite all its egregious violations, make excuses for the agency and presumptuously and patronizingly apologize to the agency or its component agencies for other patients, they also misstate the law publicly to the community thereby enabling HHS to continue their unlawful pattern. They even go as far as to, often publicly, accuse those who try to hold HHS accountable of being conspiracy theorists, making unsupported assumptions, creating unnecessary drama, reporting recklessly and manipulating the community. They question the value of insisting on HHS’s adherence to the law and instead stress the amount of work that went into an HHS project, as if that somehow offsets the violations. They also deny established facts.
This hurts all patients. It is also a double whammy for the many in the community for whom compliance with the law is not negotiable; they witness HHS break the law time and time again and, when they confront the agency, they face unsupportable accusations by others in the community who enabled, condoned, or acquiesced in, the HHS violations and/or are either not familiar with the law or choose to overlook legal violations, seemingly in the interest of a purported greater good.
The greater-good argument is, of course, a slippery slope. To what degree are we supposed to tolerate legal violations? When do they cross over to becoming inexcusable? Who gets to decide? The law exists to remove those grey zones. In our society, the duty to follow the law is not optional nor is it permissible to follow it selectively.
One person has even publicly suggested that it is improper for an advocate who chooses not to participate in a particular process to later criticize such a process. This is absurd. Usually, the reason the advocate chose not to participate in the process (assuming he or she was given an opportunity to do so) is that the process itself was flawed or tainted. Participating would be tantamount to endorsing the flawed process, such as the farcical jury model of the P2P. Only through the looking glass would this lack of participation force silent acceptance on what ultimately turns out to be not only a tainted, but an unlawful process.
It is important in this context that, once a legal violation has been explained in painstaking detail and the facts are not at all in question and are, in actuality, admitted or otherwise proven—as is the case with the FACA violations that occurred with respect to the January 2015 CFSAC recommendation—the accusation that he who uncovers HHS’s unlawful conduct made misrepresentations of the facts or the law can no longer be claimed to be a negligent attack on that person’s reputation; it’s quite intentional.
This is one of those moments when the M.E. community defines itself. Does it want to insist on HHS’s adherence to the law or condone the agency’s manifest legal violations? Some advocates have been fighting, often at great personal cost, to compel legal compliance by HHS. Others have enabled HHS, actively or indirectly, to disregard the law. Asserting that it is important to “work with” HHS or that legal infringements should be overlooked so as to achieve a purported beneficial end result, they downplay the seriousness of, or even defend, activities or processes that are tainted by unlawful HHS conduct. They also, instead of taking issue with HHS’s unlawful pattern, fault those who seek to hold HHS accountable for its legal violations.
It is crucial that those who stand for accountability of HHS under the law and integrity of the governmental process continue to insist on HHS’s compliance with the law. Pursuing legal violations by HHS gives the community unparalleled leverage in its fight against the agency’s recalcitrance, abuse, contempt, neglect, obstruction, distortions, misinformation and failure to fund. Let’s remain firm in our conviction that going along with HHS’s unlawful methods in order to get along is out of the question for our community.