Andrew Schlafly, Esq., General Counsel of AAPS, gives an update on the status of legislation to reform the Texas Medical Board. The presentation is from the AAPS evening program, Politics and Your Practice, held June 5, 2009 in Irving, TX
Dr. Stricker and I have published a new peer-reviewed article on the flawed IDSA Lyme guidelines development process, the antitrust investigation, and the lack of impartiality in the mandated review process run by the IDSA. The article is now the number 1 accessed article of the publisher with over 1600 hits in the week since it was published. (Johnson L, Stricker R. “The Infectious Diseases Society of America Lyme guidelines: A cautionary tale about development of clinical practice guidelines,” Philosophy, Ethics, and Humanities in Medicine;5:9 2010.) The article is open access. The two lead in quotes set the stage. The first is by one of the nation’s founding fathers, Thomas Jefferson: ‘Without health, there is no happiness’. The second quote is by Thucydides and speaks to power and its abuse. ‘The strong do what they can; the weak endure what they must’. An excerpt of the article follows the jump:
The Infectious Diseases Society of America’s new Lyme disease guidelines review panel will hold a one day hearing on July 30. This hearing is part of the antitrust settlement that the Connecticut Attorney General negotiated. Of the 18 speakers selected to testify, two are patient advocates, including me. The testimony will be aired live on the internet on July 30 so stay tuned.
STAND UP AND BE COUNTED
CALDA is conducting a survey of individual Lyme experiences to give you a chance to have input. Results of the survey will be included in my testimony to the IDSA panel.
This is Part 3 of a series on the Embers study of Lyme disease in non-human primates. As described in Part 1 of the series, the Embers monkey research study posed three questions: one regarding treatment of early disseminated Lyme disease, one regarding treatment of late disseminated Lyme disease, and one regarding the ability of the C6 to accurately detect infection. This part focuses on the first question–the ability of 28 days of antibiotics to eradicate infection in early disseminated Lyme disease. The 28 day treatment with doxycycline was intended to test the treatment recommendation of the Infectious Diseases Society of America (IDSA). The Embers study found that infection persisted in all monkeys treated with this protocol.
A new article today on STAT, an affiliate of the Boston Globe, raises serious questions…
What happened? The IDSA has issued its official report of the Lyme review panel. “[A] special independent Review Panel has unanimously agreed that no changes need be made to IDSA’s 2006 Lyme disease guidelines.” Let me point out three faults with this statement. First there was no “independent Review Panel”. There was a panel that was selected by the IDSA, which intentionally excluded from the panel physicians who disagreed with their assessment—all community physicians who treat chronic Lyme were excluded from the panel. Second, some changes to the recommendations were proposed by the panel. Third, the determinations were not unanimous. The most important recommendation regarding the requirement of positive serology for diagnosis actually had a 4 to 4 vote split. I will spare you the long read—28 pages of text and give you the bare bones only version. Nothing changed. They are not even sure what the fuss was about, honestly. They never expected the guidelines to change, stacked the panel, paid the ethicist, ran the process, and achieved a foregone conclusion which “validated” their guidelines. Seems like the IDSA fat cat ate the canary.
Every now and then you gotta kick up your heels. This year I headed back east for Time for Lyme's GALA. The Young People's Chorus of New York City gave an amazing performance of internationally inspired songs. Actor, Director and Writer Lou Diamond Phillips of Lyme Life gave a compelling speech and a rousing performance singing with the band–including the song LA BAMBA–which had everyone up dancing. The picture is me leaning in to talk with Dr. Luc Montagnier, a Nobel Prize winner for his discovery of HIV, who was honored at the GALA.
