https://www.linkedin.com/pulse/breaking-news-tick-borne-diseases-working-group-over-700-jenna/

0

BREAKING NEWS: Tick Borne Diseases Working Group Reviews Over 700 Public Comments and Uses Zero

Published on December 3, 2018

Jenna Luche-Thayer

FRIENDS,

On December 3, 2018, the Tick Borne Diseases Working Group (Working Group) held their final Public Meeting related to their 2018 Congressional Report.

Federal advisory committees like the Working Group routinely ensure public stakeholder engagement by providing a timeframe for public review and response on major Reports, such as the Working Group’s 2018 Congressional Report.

Federal advisory committees routinely ensure public stakeholder engagement by reviewing, integrating and posting public comments. These comments are normally summarized and included in major Reports. These comments often shape recommendations. Federal laws for transparency and requirements for public participation support these practices.

In this case, strong public criticism regarding the Working Group’s lack of transparency, which included their actions regarding public comments, has resulted in a farcical and life-threatening set of responses.

WORKING GROUP RESPONSE TO TRANSPARENCY CRITICISM

During the December 11-12, 2017 Public Meeting the Working Group’s former Designated Federal Officer (DFO) Richard Wolitski promised public comments would be posted on the Health and Human Services (HHS) website.

When the public comments did not materialize on the HHS website, many Lyme advocates sent inquiries asking where one could find the public comments. HHS responses to these public inquiries were polite. They were also vague, elusive and misleading. For example, responses to a number of inquiries appeared to exploit laws to protect the disabled as an excuse and ignored publicly accessible technology available to serve disabled.

On April 28, 2018, Kristen Honey, the Vice Chair of Working Group announced at a Lyme conference in Maine, ‘all comments via email from the public will be considered by the Working Group before the Subcommittees’ Reports are finalized’. She went on to say she had ‘the public comments on her dining room table and she was reviewing them after work hours’.

Honey again claimed she had ‘the public comments on her dining room table and she was reviewing them after work hours’ during the Working Group’s May 15-16, 2018 Public Meeting. There was, however, no evidence ‘all comments via email from the public had been considered by the Working Group before the Subcommittees’ Reports were finalized’.

During the July 24, 2018 Public Meeting, Honey outlined how a new ‘Public Comments Subcommittee’ was established. She said the Subcommittee will provide public comments summaries to the newly reconfigured Working Group responsible for the next Congressional Report due in 2020.

During the December 3, 2018 Public Meeting, Honey announced the Public Comments Subcommittee had reviewed over 700 (of the more than 1000) public comments submitted by email. A PowerPoint slide gave details the thinly summarized the 700 public comments in a few sentences. Honey again noted the public comments summaries will be provided to the newly reconfigured Working Group responsible for the next Congressional Report due in 2020.

WHAT DO THESE ACTIONS MEAN?

According to the Vice Chair, the Working Group has apparently made zero use of more than 1,000 public comments.

This means members of the public—including persons suffering from Lyme and other tickborne diseases—who took the time and energy to draft and submit over 1,000 comments containing information, concerns and solutions were roundly EXCLUDED from this process.

This exclusion by persons who claim to be advocating for Lyme and tickborne disease patients is a travesty.

Does HHS and the Working Group’s leadership really think the public will buy the scam that the majority of public comments—completely ignored in the 2018 process—will be miraculously embraced by the ‘next version’ of the Working Group?

In addition to excluding the majority of the public comments, the opportunity for public review and comment on the draft 2018 Congressional report was almost nonexistent:

  • drafts of Subcommittee reports were provided to the public almost simultaneously to the Working Group review process, thereby eliminating most of the opportunity for considering public input.
  • the earlier draft of the 2018 Congressional report was never posted on the HHS website
  • instead, LymeDisease.org, a Lyme advocacy organization, provided the Lyme community important access to the draft Report via their website.
Does HHS and the Working Group’s leadership really think the public forgives their obstruction to legitimate engagement on the draft 2018 Congressional Report?

The format of the Public Meetings was another obstacle to public engagement. Many federal advisory committees choose to have interactive public exchange during their Public Meetings. For example, dialogue is supported—the public may pose questions to the members and members are expected to provide responses to questions.

HHS and the Working Group instead decided to implement a structure whereby public comments require ZERO response by the Working Group members. Given the many common interactive exchanges utilized by federal advisory committees, their choice to limit any opportunity for exchange indicates intent for a very controlled process and outcome. Their choice is also rather disrespectful, dismissive and commonly found in authoritarian and corrupted practices whereby stakeholder engagement is empty theater.

Altogether, both HHS and the Working Group’s leadership have demonstrated very low commitment to public exchange and collaboration.

Towards the end of the December 3, 2018 Public Meeting, Vice Chair Honey reiterated the importance of TRUST as a key value of the Working Group.

At this point in time, many in the Lyme community TRUST the Working Group will continue to ignore the human right for access to diagnosis and medical care as their 2018 Report makes NO RECOMMENDATIONS to stop:

  • obstruction of access to all existing diagnostic technologies that meet state, national and/or international standards
  • obstruction of access to all existing treatment options from guidelines that meet internationally accepted standards for evidence-based medicine

The 2018 Report mischaracterizes this obstruction as legal issues when it is, in fact, corrupted policy set by federal agencies and the IDSA.

Many in the Lyme community TRUST the Working Group will continue to promote the term Post Treatment Lyme Disease Syndrome (PTLDS) and ignore the fact the term is used to DENY ACCESS TO MEDICAL CARE.

PTLDS was ‘officially introduced’ in the IDSA 2006 Lyme guidelines and by 2008 both PTLDS and chronic Lyme disease were defined as Medically Unexplained Symptoms (MUS). MUS is described as a form of hypochondria or a psychosomatic condition. In 2013, MUS was formally repudiated and deleted from the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) by American Psychiatric Association.

According to the references on the CDC and NIH websites, medical practitioners are advised against using antimicrobials to treat the MUS-hypochondria of PTLDS and Chronic Lyme Disease (CLD). They recommend treating PTLDS and CLD with palliative care including emotional support and management of pain, fatigue, or other symptoms as required.

The IDSA, CDC, NIH and DOD fraudulently use the repudiated diagnosis of MUS to deny debilitating and disabling Lyme symptoms can be caused by persistent infection.

The Lyme infection is proven to be able to persist after a short course of antibiotics. However, because the CDC, NIH, DOD and IDSA define PTLDS as a form of ‘hypochondria’, private insurers, Veterans Affairs, DOD, Medicare and Medicaid refuse obviously ill persons access to additional medical care after IDSA’s recommended protocol.

Every week, more and more patients are told they have PTLDS because the IDSA short course treatment failed to resolve their debilitating and disabling Lyme symptoms. Veterans suffering from debilitating infection and complications are accused of being malingerers and thrown out of service with all their benefits cruelly removed.

Many in the Lyme community TRUST the Working Group will continue to avoid addressing the fact of persistent Lyme infection and the immunosuppressive nature of the Lyme infection.

Many in the Lyme community TRUST the Working Group will— as stated in their 2018 Congressional Report—continue to ‘take no stand’ regarding the attacks on clinicians who treat these vulnerable patients and the researchers intent on improving diagnostics and treatment options.

Transparency and accountability are foundational to democratic processes. The Working Group has failed these principles in epic manner.

The Working Group has failed to clearly state Lyme infection can persist and is immunosuppressive. This is an epic failure that supports the suppression of science and decades of human rights violations.

Their failure supports decades of unnecessary suffering, the destruction of families, bankruptcy, disability and death by tick borne diseases. Their failure contributes to fattening the bottom line profits of insurance companies, the offloading of medical costs by the DOD, Veterans Affairs, Medicare and Medicaid onto sick and vulnerable persons, and big Pharma profiteering from drugs that treat symptoms rather than the disease.

In other words, the corrupt, inhumane and deadly status quo.

Faithfully,

Jenna

Jenna Luché-Thayer. 30+ years working globally on the rights of the marginalized. Former Senior Advisor to the United Nations and the US Government. Director, Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes. Founder, Global Network on Institutional Discrimination, Inc. —Holding institutions accountable for political and scientific solutions. Email jennaluche@gmail.com