https://www.linkedin.com/pulse/anti-patient-bias-embedded-tickborne-disease-working-its-jenna/? by Jenna Luche-Thayer

Anti-patient Bias Embedded in Tickborne Disease Working Group and its Subcommittees

According to the HHS website on the Tick-Borne Working Group(TBDWG), ‘the TBDWG is committed to openness and transparency in its work, and to providing impartial, evidence-based recommendations to the HHS Secretary and Congress. This commitment aligns with requirements in the Federal Advisory Committee Act (FACA) and the Sunshine Act. These requirements stipulate that: a balance in points of views be represented by the committee and committee recommendations be objective and accessible to the public.’

However, the selection of the 51 members for the TBDWG Subcommittees give evidence these requirements are not being met. The following information and analysis highlights these deficiencies.

FACT ONE: Lyme patients share three core concerns and priorities.

1.  Current serology tests are unreliable, leaving many undiagnosed and untreated. Diagnostic tests need be improved to capture early and late infection and presence of pathogen in seronegative persons.

2.  In the absence of reliable tests, clinical diagnosis is sufficient to begin treatment with antibiotics.

3.  Many Lyme patients have symptoms and complications from ongoing and persistent infection. These symptoms and complications can be debilitating, disabling and lead to death. Treatment options for these symptoms and complications should include those that have been vetted through internationally accepted standards for clinical practice guidelines. This would mean that long term antimicrobial treatments are part of the options available to patients.

FACT TWO: Infectious Diseases Society of America (IDSA) opinions regarding Lyme disease oppose patient priorities. The IDSA opines that:

§ Current serology tests are reliable and should be used to reconfirm clinical diagnosis. Treatments should begin when results of recommended serology tests are both positive.

§ There is lack of evidence of persistent infection and therefore no long-term treatment options are necessary for Lyme patients.

FACT THREE: There are many hundreds of peer-reviewed publications that support the patients’ concerns and priorities, including many publications co-authored by IDSA members.

FACT FOUR: The CDC’s and NIH’s bias for IDSA Lyme opinions is demonstrated. (There are numerous examples, just one listed below – viewed February 8, 2018)

On the CDC website (www.cdc.gov/lyme/treatment/index.html) it says go to this link “For details on research into “chronic Lyme disease” and long-term treatment trials sponsored by NIH, visit the [hyperlink –>] National Institutes of Health Lyme Disease web site.

On that NIH link (www.niaid.nih.gov/diseases-conditions/lyme-disease) it says: “To learn about risk factors for Lyme Disease and current prevention and treatment strategies visit the MedlinePlus Lyme Disease site (link is external). This direct is to the 2006 IDSA Lyme Guidelines.

FACT FIVE: All federal government employees participating in the TBDWG [1] and its subcommittees, are by law, expected to uphold the priorities and objectives for Lyme and tick-borne diseases (TBDs) of their federal agencies.

From HHS website, “Federal members are appointed by their respective offices or agencies. Five of the federal members are from the Department of Health and Human Services. They represent the Centers for Disease Control and Prevention; the Centers for Medicare and Medicaid Services; the Food and Drug Administration; the National Institutes of Health; and the Office of the Assistant Secretary for Health. The two remaining federal members represent the Department of Defense and the Office of Management and Budget, Executive Office of the President.”

FACT SIX: All private citizens participating in the TBDWG and its subcommittees whose careers are supported by federal grants, e.g. grants from the CDC and NIH, will be under pressure to support these federal agencies’ priorities and objectives for Lyme and TBDs.

FACT SEVEN: There is significant public record that many of the government employees and private citizens participating in TBDWG and its subcommittees share and promote the bias of the IDSA opinions regarding Lyme disease that counter Lyme patients three concerns and priorities.

FACT EIGHT: Based on the previously stated facts, out of the 14 voting members, the following 5 of the TBDWG’s voting members will support the opinions of the IDSA and two others may be required to do so.

§ Subcommittee on Disease Vectors, Surveillance & Prevention Co-Chair Ben Beard —based on evidence that CDC supports IDSA opinions regarding Lyme disease and historically has shown little concern for Lyme/TBD patient priorities

§ Subcommittee on Pathogenesis, Transmission and Treatment Co-Chair Captain Estella Jones —based on evidence that FDA supports IDSA opinions regarding Lyme disease and historically has shown little concern for Lyme/TBD patient priorities

§ Subcommittee on Testing and Diagnostics Co-Chair Lise Nigrovic —public records regarding her and her institutions’ views in support of IDSA opinions regarding Lyme disease. The second Co-Chair has yet to be selected

§ Subcommittee on Vaccine and Therapeutics Co-Chairs Robert Smith and Dennis Dixon both support IDSA bias —shown with public records of their institutions and evidence that historically NIH has shown little concern for Lyme/TBD patient priorities

§ Subcommittee on Access to Care Services and Support to Patients Co-Chair Commander Scott Cooper is a federal employee and required to support federal priorities for Lyme and TBDs

§ Vice Chair Kristen Honey is a federal employee and required to support federal priorities for Lyme and TBDs.

FACT NINE: The three pediatric Lyme doctors involved in this process show bias for IDSA opinions and against patient priorities.

FACT TEN: One Lyme organization holds one third of the seats held by those representing Lyme organizations focused on patient priorities (as identified by HHS website).

FACT ELEVEN: Both Co-Chairs Subcommittee on Vaccine and Therapeutics show IDSA bias and may therefore influence all subcommittee proceedings for vaccines and therapeutics toward IDSA Lyme bias.

FACT TWELVE: 35.7 to 50 percent of the TBDWG voting members show IDSA Lyme bias or under influence to support IDSA Lyme bias. (Another voting member is still to be appointed and will change this percentage.)    

Out of the 51 subcommittee members (apart from Co-Chairs), there is a clear majority of 28 members with IDSA Lyme bias/under influence to support IDSA Lyme bias —this is 54.9 percent of the subcommittee members.

FACT THIRTEEN: All but one member of the Subcommittee on Tick-Borne Diseases and Co-Infections (excludes Co-Chairs) are pro-IDSA Lyme opinions or under influence to support IDSA Lyme opinions against patient priorities.

###

[1] This does not include those citizens given ‘special government employee’ status; the influence of the SGE status remains unclear.

contact: jennaluche@gmail.com

_____________

For more: https://madisonarealymesupportgroup.com/2017/11/14/thayer-interview-commentary-on-tick-borne-disease-working-group/

https://madisonarealymesupportgroup.com/2017/10/13/1st-officially-recognized-report-on-violations-of-lyme-patients-human-rights-is-released-updating-borreliosis-diagnostic-codes/

https://madisonarealymesupportgroup.com/2017/06/28/human-rights-violations-of-relapsing-fever-and-lyme-disease-patients-under-internal-investigation/

https://madisonarealymesupportgroup.com/2017/08/28/metlife-discrimination-against-chronic-lyme-patient/

https://madisonarealymesupportgroup.com/2017/12/13/public-comment-at-tbi-working-group-meeting/

https://madisonarealymesupportgroup.com/2017/10/16/corruption-in-the-lyme-caucus/