On behalf of the LDA, Congressman Christopher Smith (NJ) this week investigated the reason why the Infectious Diseases Society of America (IDSA) Lyme treatment guidelines were removed from the National Guidelines Clearing House (NGC) website. The NGC requested that we use the official communications below from them in response to the inquiry as to why the IDSA Lyme Guidelines were removed.

“Thank you for contacting the National Guideline Clearinghouse (NGC). NGC is a Web site intended to make evidence-based clinical practice guidelines, related summaries, and companion materials widely available to health care professionals and others. It is an initiative of the Agency for Healthcare Research and Quality (AHRQ), U.S. Department of Health and Human Services. Learn more on the About NGC page.

Regarding your inquiry, please note that the guideline summary you inquire about is no longer available in NGC. It was removed from the NGC database because the guideline no longer met the NGC Inclusion Criteria pertaining to date. More specifically, the NGC inclusion criteria require that all guidelines represented in the NGC database have been developed, reviewed or revised within the last five years. All guidelines that no longer meet these criteria are removed from the NGC site on an annual basis.

Please see our Guideline Archive for a listing of the summaries withdrawn to date. Please note however that the full-text guideline can be accessed by clicking here. You may also be interested in this press release regarding an update that is in progress: IDSA/AAN/ACR Lyme Disease Guideline Project Plan.

Thank you again for your interest in NGC. Sincerely, Lisa T. Haskell, MSOT NGC Project Manager “

In summary, the Guidelines were removed because they no longer met the NGC inclusion criteria because of their date—they were “stale.” NGC indicates that guidelines that have not been developed, reviewed or revised within 5 years are removed annually. The date of IDSA’s Guidelines was 2006.

It has long been the position of the Lyme Disease Association, Lymedisease.org, and many Lyme organizations across the country that the IDSA guidelines should be removed. The LDA had an online petition that generated 45,000 signatures against the Guidelines. The LDA has organized many group sign-on letters to federal officials regarding the IDSA Guidelines. Lyme groups have many process concerns, and 57 organizations signed onto letters to the US House of Representatives Lyme Caucus and one to the Energy & Commerce Committee asking for an investigation into the development process. Click here to see that effort. These are just a sample of LDA’s efforts concerning the new guidelines under development by IDSA, which most likely will be finished by year’s end.

On behalf of patients everywhere, LDA will not let the introduction of new IDSA Guidelines go un-noticed. We will stand together and ask the questions that need to be asked, and continue the pressure to ensure that patient interests are served by any new Guidelines that the IDSA develops. If that does not happen, we will lift our united voices in protest until it does happen.