Lyme Policy Wonk

Lyme Policy Wonk

LYMEPOLICYWONK: Senators Request Removal of IDSA Lyme Guidelines from National Guidelines Clearinghouse
February 2, 2012

Today Senators Blumenthal and Gillibrand joined together to ask the National Guidelines Clearinghouse (NGC) to remove the outdated 2006 IDSA Lyme disease guidelines from their website.(Full text of letter below.) We applaud the Senators for speaking up loud and clear. Their letter voices concerns that the guidelines do not satisfy the currency requirement and asks that the NGC remove the guidelines until the IDSA conducts a review that ensures that the guidelines reflect current evidence-based medicine principles. The Senate letter comes on the heels of a letter from Congressman Smith, Wolf, and Gibson expressing similar concerns. New York Assemblyman Richard Gottfried, who chairs the Health Committee also requested that the NGC remove the guidelines pending a review for currency. Approximately 10,000 people have signed a petition launched by LymeDisease.org calling for the removal of the IDSA guidelines from the NGC.

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Lyme Policy Wonk

LYMEPOLICYWONK: 10,000 Signatures in 9 days–On a Roll!
February 2, 2012

10,000 Signatures in 9 days–we are on a roll! That is more than 1,000 signatures a day.

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Lyme Policy Wonk

LYMEPOLICYWONK: Congressmen Call For Removal of Outdated IDSA Guidelines from National Guideline Clearinghouse
January 21, 2012

On January 17, 2012, Congressmen Smith, Wolf, and Gibson called on the National Guidelines Clearinghouse (NGC) to remove the IDSA’s outdated Lyme guidelines. We applaud them! But, this, of course, is the middle of the story not the beginning, so let’s go back.

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Lyme Policy Wonk

LYMEPOLICYWONK: And, the Number Is? 5,200 Responses! IDSA Guidelines and Patient Preference Survey
January 3, 2012

Let me thank everyone who responded to the Patient Preferences Survey! We have drawn over 5,200 responses, which is just simply fabulous. We will now start the process of reviewing the responses with an eye toward publication of the results. Our last survey was published in Health Policy, a widely respected peer reviewed journal. Those results now help inform the base of knowledge of the access to care problems that Lyme patients face. Our goal with these surveys is to open the space for conversations in the public health arena about what is really going on with Lyme patients from their perspective. We are trying to give voice to the patient community, which is all to often completely ignored in conversations about Lyme disease. Your willingness to participate in these surveys allows us to do that. So hats off to you for being so vocal and letting us know your views.

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Lyme Policy Wonk

LYMEPOLICYWONK: Speak Up Now! IDSA Lyme Guidelines And Patient Viewpoints Survey Ends January 1. . .
December 29, 2011

Since we launched this survey in early October, we have drawn over 4,800 responses. The survey will end on January 1 so I encourage those of you who have not yet responded to take the time to do so. According to the Institute of Medicine, guideline developers must consider patient values and preferences to be considered trustworthy. This survey aims to find out what you think is important about treatment options, choices, risks and benefits. Respond to the survey and remind the IDSA that patient values are central to treatment guidelines!

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Lyme Policy Wonk

LYMEPOLICYWONK: SIGN THE PETITION TO REMOVE THE IDSA GUIDELINES FROM THE NGC!
December 24, 2011

Medical treatment guidelines are tremendously important in determining your treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC), which is part of the US Department of Health and Human Services. It’s the government’s way of providing updated information about different diseases to health care professionals. NGC’s own rules require that listed guidelines be updated every 5 years. The Infectious Diseases Society of America has not revised its controversial Lyme disease guidelines for more than 5 years. Nevertheless, the NGC recently permitted the IDSA to continue listing the Lyme guidelines without updating them.

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Lyme Policy Wonk

LYMEPOLICYWONK: CBS Lyme Story, A Tale of Conflicts of Interest & Bias
December 18, 2011

A CBS news story on Lyme disease has patients concerned about the misinformation that it promotes. On top of that, the story does not have the level of journalistic integrity that serious topics should have. For one thing, there is the title: “Lies and Truths”. Lies are statements that are known to be false that are told to intentionally deceive another person. Lies are not issues that are matters of scientific debate. When a science article title uses the word “Lies”, it tells the reader that it is not about science. Second, the article is a single source article. This means unlike most journalism and particularly good science journalism, there is no attempt to present different sides of the issue. One side, in fact, one person’s opinion is put forth as uncontested “truth” with no counterpoint. Third, the piece is edited by the Orly Avitzur, M.D., M.B.A., Editor-in-Chief of the American Academy of Neurology (AAN). You may recall that the AAN was part of the antitrust investigation by the Connecticut Attorney General into the Lyme guideline development process by the Infectious Diseases Society of America. The reason?

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Lyme Policy Wonk

LYMEPOLICYWONK: NIH Tick Feeding Study Safety Risk Update
November 20, 2011

We recently received a response from the NIH regarding our concerns about the NIH tick feeding study and the risk of tickborne infections from the larval ticks that researchers intend to place on patients to feed. We have written the NIH about this several times. Our latest letter focused on the newly identified pathogen, Borrelia miyamotoi, which can be transmitted to larval ticks through the mother's eggs. We asked the NIH to tell us what bacteria they test for in the larval ticks to ensure that patients in the study are not at risk. According to the NIH, the following pathogens are screened for: Borrelia burgdorferi, Babesia microti, Anaplasma phagocytophilum, Borrelia miyamotoi, Bartonella spp, Rickettsia sp., deer tick viruses and orbiviruses. We are glad to see that these pathogens are being screened for but remain concerned that unidentified pathogens nevertheless place patients at risk in the study.

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LYMEPOLICYWONK: Perception is Everything—Is it Black or White: Who decides?
November 17, 2011

When science is uncertain, who decides what to do? Do patients get treated or are they abandoned and told to wait for research that, in the case of Lyme disease, may never come? I attended a conference in Spain this year at the Cochrane Collaboration. One of the speakers, Dr. Mary Docherty, pointed out that recommendations to deny care based solely on “insufficient evidence” could be inappropriate and harmful to patients. To illustrate the point, she used the example of an upper GI (gastro-intestinal) bleed. Suppose there are two treatment options, but there is insufficient evidence to support either one? Still, the patient with an upper GI bleed must be treated. To do otherwise, might risk death or serious disability for the patient. Such is the case with Lyme disease.

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Lyme Policy Wonk

LYMEPOLICYWONK: Patient Viewpoints Survey Update. 2,000 Responses! We Are On Our Way.
October 7, 2011

The Lyme disease Patient Preferences Survey initially posted on October 5 has drawn over 2,000 responses to date! We want to thank everyone who responded and encourage you to distribute the survey to others you know who have Lyme disease. We received many comments on the survey as well with suggestions for future surveys. The two competing guidelines for diagnosing and treating Lyme disease (those of the International Lyme Disease Association and those of the Infectious Diseases Society of America) are both over 5 years old. Because of this, we assume they are in the process of revision. We have contacted the IDSA and asked about their timetable for guideline revision and requested that patient viewpoints be included in any development process. We will keep you posted.

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