Journey Through Challenge - JENNA LUCHE-THAYER - Sayre, PA
        THROUGH CHALLENGE - A Journey Through Lyme Disease


PLEASE READ AND SIGN THE FOLLOWING PETITION
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From:
To:
Sent: 3/27/2017 7:37:14 P.M. Eastern Daylight Time
Subj: Petition to HHS Secretary Tom Price to End Preferential Treatment of IDSA Lyme Guidelines
 
signing this “citizen petition” to recently confirmed HHS Secretary Tom Price that calls on him to take action to end CDC’s preferential treatment of the IDSA guidelines for Lyme disease.This petition was filed in accordance with the Administrative Procedure Act (APA), which governs the conduct of the federal government. APA petitions function as legal instruments and agencies are required to rule on them in a timely manner. If a petition is denied, they must include a statement of the grounds for denial.This petition is similar to one that was filed directly with CDC in August 2016.  CDC has declined to act on that petition, which is the reason we are going above them to the HHS Secretary. As the HHS Secretary, Price has to end the preferential treatment with a memorandum of action to the CDC Director.Summary of PetitionCDC provides preferential treatment to IDSA by endorsing and promoting IDSA’s 2006 guidelines for Lyme disease, which are not compliant with current standards and are not listed by the National Guidelines Clearinghouse (NGC), while withholding information from the medical community, the insurance industry, and the general public, about more current guidelines from the International Lyme and Associated Diseases Society (ILADS) published in 2014 that are fully compliant with current standards and listed on the NGC.CDC’s preferential treatment of IDSA adversely impacts the health of thousands of chronically ill patients who are harmed by misdiagnosis and denial of medically necessary treatment because of restrictions imposed by the IDSA guidelines. CDC’s failure to provide equivalent exposure for the ILADS guidelines compounds the harm by limiting access to information about evidence-based treatments that could help these severely ill patients recover from this devastating disease.In addition to harming patients, CDC’s preferential treatment of IDSA violates the Standards of Ethical Conduct for Employees of the Executive Branch, which states: “Employees shall act impartially and not give preferential treatment to any private organization or individual.”Especially troubling is that CDC officials who provide and defend the preferential treatment are also members of IDSA, the organization receiving the preferential treatment. Why This Petition Can Make a DifferenceA reason to be optimistic is that Price is a member of Association of American Physicians and Surgeons (AAPS), which is opposed anything that restricts the practice of medicine. In 2009, the AAPS wrote an open letter to the IDSA criticizing its guidelines for Lyme. Below is an excerpt.“AAPS to the overly rigid IDSA Lyme Guidelines that were published in 2006. . . These Guidelines should be revised to recognize that the physician must retain full flexibility in the diagnosis and treatment of Lyme disease. Medical societies do not practice medicine; physicians do. The mandate for specific laboratory confirmation is particularly objectionable, as testing for Lyme disease is notoriously insensitive and unreliable. Patients who do not meet this criterion would often be denied treatment that could In some cases, long-term treatment is required. Physicians must be able to exercise their professional judgment concerning the best treatment for each individual patient, without restraint by one-size-fits-all Guidelines, which amount to mandates and prohibitions.”Given Price’s membership in AAPS and his public statements, it would be unlikely that he will allow CDC’s preferential treatment of IDSA to continue once it’s brought to his attention. the petition and a letter requesting an expedited ruling have been sent via certified mail to Secretary Price and to the HHS Office of General Counsel.Petition to HHS: Enact Rule to End Preferential Treatment of IDSA Guidelines for Lyme DiseaseClick here to sign the petition: www.change.org/p/u-s-department-of-health-and-human-services-enact-rule-to-end-preferential-treatment-of-idsa-guidelines-for-lyme-diseaseWe have a limited amount of time before the new IDSA guidelines come out and weaken our position, so we need to do everything we can to get the attention of the new leadership at HHS.Please sign and share.  Fries, President
Patient Centered Care Advocacy Group


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Hello All,

  I am honored to share with you with permission from Jenna Luche-Thayer some great work she has been doing lately in the Lyme and Tick related diseases epidemic. Jenna credentials are also listed after the videos. She has earned the Lyme communities respect as so many have. Thank for all you do. 

David R Thomas

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Part 1 of 3 CDC & Lyme - Oversight Required 2016, by Jenna Luché-Thayer


  Part 2 of 3 CDC & Lyme - Oversight Required 2016, by Jenna Luché-Thayer


  Part 3 of 3 CDC & Lyme - Oversight Required 2016, by Jenna Luché-Thayer


  Greetings my friends, Here are the analytical docs and supporting videos on 'youtube' as promised Background on videos:
Jenna Luché-Thayer’s expertise includes government transparency, accountability, and the integration of marginalized groups. Luché-Thayer is informed by three decades of professional policy and grassroots experience in 40 countries.  She has extensive experience in congressional and legislation.  She has worked with governments, the United Nations, nonprofits and the corporate world and has over 65 sponsored publications.  Luché-Thayer received the International Woman’s Day Award for Exemplary Dedication and Contributions to Improving the Political and Legal Status of Women (US government) and built the Highest Ranking Technical Area in Accomplishment, Innovation & Comparative Advantage for United Nations Capital Development Fund. 
There is a correction regarding the PLEASE Study: I misstated that Arend authored the PLEASE study, the primary author is Dr. Bart-Jan Kullberg and the purpose of the study "is to establish whether prolonged antibiotic treatment of patients diagnosed with proven or presumed PLD (as endorsed by the international ILADS guidelines) leads to better patient outcome than short-term treatment..."This Study objective is inherently flawed as International Lyme and Associated Diseases Society (ILADS) does not claim to have one particular treatment protocol for all Lyme patients. All ILADS protocols are patient centered to the patient. Therefore, the treatment protocol the PLEASE study uses does not represent ILADS nor prove or disprove any ILADS protocols. 
 



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