IDSA Answers Lyme Caucus/LDA

The House Lyme Disease Caucus Co-Chair Congressman Christopher Smith (NJ-4) has released a letter from the Infectious Diseases Society of America (IDSA) regarding its new Lyme Guidelines.

History: LDA led the effort to get 57 groups signed on to a letter expressing concerns about the proposed IDSA Guidelines Development process which was sent to the Caucus. (Click here to read letter)

As a result, the Caucus sent a letter (Click here to read letter) expressing concerns and transmitted the LDA group letter to the IDSA. The IDSA quickly responded to Co-Chair Congressman Chris Smith that it would extend its time for input into the process by 15 days─ a concern expressed by the groups.

Update: Late last week, the Caucus received a letter (Click here to read letter) from the IDSA/AAN/ACR─ the 3 groCongressman Chris Smithups partnering in the new Lyme disease guidelines’ development─ addressing the issues which were raised by the Caucus and LDA group letters.

The response included agreeing to add “at least one current or former patient and a parent of a patient treated for confirmed Lyme disease to the panel.” The IDSA indicates it is working on identifying those patients, although no indication has been given that it will ask input from the active Lyme community in choosing those patients, and whether the language in the letter, “confirmed Lyme disease,” automatically rules out chronic Lyme patients sitting on the panel-those who would be most highly impacted by the decisions of the panel, those with diagnostic, treatment and insurance difficulties relating to Lyme.

The letter also stated another period of public comment would be provided when a draft of the Guidelines are available.

No Lyme advocate has been included in the process, nor have any treating physicians. Questions of transparency and conflicts of interest on the new IDSA panel were mentioned in the IDSA response letter; however, the LDA is gravely concerned that the answers provided do not appear to be consistent with the realities of the process.

Although the IDSA alludes to its adherence to GRADE methodology, it did not mention that the GRADE method would be a modified one, using summaries of studies rather than the actual studies, which may then never be evaluated by the panel itself. LDA will work further with its Lyme community partners to further explore these issues and what steps can be taken to level the playing field for chronic Lyme patients.