IDSA fails the test

Editorial note: I posted the content below but forgot to discuss the implications. Here goes: The restrictive guidelines for diagnosis and treatment of Lyme disease published by the IDSA (Infectious Disease Society of America)  have caused some doctors and insurance companies to restrict the treatment options available to patients. There is enough evidence that these guidelines are biased that the IDSA was prosecuted by the Attorney General of CT (a lyme-endemic state) on an anti-trust basis. In the end, they settled out of court and held hearings to reconsider the guidelines. As I explain below, the hearings did not lead to any major changes in the guidelines. This is bad news for Lyme patients. However, the hearing process itself was flawed and biased. Luckily, there is one crucial thing the hearing panel disagreed on — whether or not a Lyme diagnosis can be made clinically, even without clear test results. Since the tests are flawed, this would represent an important change for Lyme patients. It could help reduce the number of people who are diagnosed late and thus develop chronic Lyme, and allow those who’s Lyme is already chronic to be counted, get treated, and so on. As described below, even with regard to this issue, the panel recommended no immediate changes to the guidelines. However, it is still possible that the Attorney General will be able to push the IDSA in the right direction, and that at least that change will be made. Now back to my original post:

The IDSA posted its final report based on the hearings held last fall (videos available until about 1/2011). The report concludes that no changes are necessary to the current guidelines, though small modifications are suggestion on the next revision. This report, and the process that generated it, are currently being reviewed by the office of the Attorney General. I will be following the details on Lyme Policy Wonk as they unfold.

In the meantime, here are some flagrant examples of how entrenched the IDSA is:

– Although required to, the IDSA initially did not initially vote on whether the evidence supported the results for each recommendation. The Attorney General of CT had to remind them of the details of the settlement agreement. When in response the IDSA did cast this vote, it listed all votes as 8-0, which is interesting considering that 2-3 people recommended some change in the next revision to the guidelines on many of the recommendations. One might expect a vote of 6-0 or 5-0 given the recommendations.

– The issue of whether or not clinical findings for diagnosis of Lyme disease that does not include an erythema migrans rash can be used for diagnosis was explored but classed as “not a recommendation”. Despite this, the panel reports that it discussed clinical diagnosis and was evenly split on whether the statement requires modification (a key step along the way to changing it). However, since the panel did not class it as a recommendation, it did not vote on whether the evidence supports the guidelines, nor did this lead to a change in the current guidelines. As with other things mentioned above some changes (not comprehensive) are recommended for future versions of the guidelines, when they are next revised.

Seems to me as if the IDSA failed the test here, not the evidence that stands against the guidelines!

2 thoughts on “IDSA fails the test

  1. What can we all do. There needs to be a giant march. With ALL of us. Needs to be scheduled enough in advance so the really sick can prepare to attend or be helped there. My daughter and I have Lyme and I feel helpless- she is not getting better and I don’t want something horrible to happen to her. I don’t feel like I am doing enough. Someone please tell me what I should do. Tami Kutovy

  2. Wow, it’s great to see your passion and willingness to take action. Right now, the community is most organized around the state mailing lists that exist all over the country (and there are some international lists if you are not U.S. based). Find them by going to http://groups.yahoo.com/group/Lyme (e.g. http://groups.yahoo.com/group/MassachusettsLyme). The people running those lists can help put you in touch with others who are involved in the activism surrounding Lyme disease. If you tell me what state you’re in, I can try to help. Also, there are groups like CALDA (http://www.lymedisease.org/, california based) and PA Lyme (http://www.lymepa.org/). Let me know if you need more suggestions! We need people willing to take action.

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