Labor HHS 2010 appropriations language directed the National Institutes of Health (NIH) to“sponsor a scientific conference on Lyme and tick-borne diseases” and mandated that the conference represent the broad spectrum of scientific views…and provide a forum for public participation and input from individuals with Lyme disease.” Rather than conducting this review themselves as an NIH State of the Science conference as anticipated, the NIH subcontracted the work out to the Institute of Medicine. Looked at in the most kindly light, perhaps they regarded the Lyme controversy as “too hot to handle” or “not in my backyard”. A less charitable viewpoint would characterize the shunt to the IOM as “forum shopping”—a way of selecting a process that is most likely to favor a desired outcome.

Coming on the heels of the IDSA’s strong arm tactics in the Lyme guidelines review panel process, many in the Lyme community are reluctant to put much faith that the process will yield fruit for the Lyme community.  Many of us remember how lovely the IDSA hearing was, how receptive the panel members seemed, and how many times the IDSA, which ran the process, squirreled it in their direction: first, by selecting members with a particular bias and most recently by fudging the vote to ensure the outcome intended.  The IDSA was, of course, under siege, having been investigated by the Connecticut Attorney General.  Its response might be understood in the context of the organization itself, the IDSA, having a conflict of interest in running a process that could make or break its reputation.  The fox never was a very good guard of the chicken coop it turns out.  The fact that the IDSA found each of its recommendations did not require change is perhaps not surprising.  Still, it is extremely concerning that the IDSA puts its organizational interests ahead of patient care.  This bodes ill for health care reform if those making the rules and developing guidelines do not consider patient care the paramount concern.

So what about the new IOM process?  The timing of it—the first hearing being held within weeks of the IDSA conclusion—is disturbing.  It just smells like a one-two punch by the IDSA to ratify its guidelines—or at least its interpretation of the science–by an independent third party.  And, then there’s the process switch from a forum at the NIH that recognizes the role of “stakeholders” to a process that does not and that regards bias as ok.  What about the constitution of the committee?  Turns out that most of the members of the IOM committee are also members of the IDSA.  To make matters worse, the IOM, holds “closed session” meetings and has its reports reviewed anonymously by an outside group.  There goes the concept of open and transparent.  The role of patients so far is limited to a 5 minute comment period.  This means that no one will travel to DC for the hearing.  It also means that patients may have a voice, but not much of one.  Does that sound too cynical?  I hope that I am wrong.  You should too.

You can follow additional comments on Lyme policy at www.lymepolicywonk.org.  You can contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.