Lyme Policy Wonk

There is a fabulous article on the importance of patient choice in universal health care in the Wall Street Journal. The article, "Sorting Fact from Fiction," is by Groopman . I recommend that you take the time to read this important piece, which identifies many of the issues Lyme patients have been raising for some time.

I posted a comment to the article drawing the analogies to Lyme disease, which follows. You may want to weigh in on this important topic.

Those who attended the IDSA guidelines hearing were struck by the even-handed tone of the proceedings established by the Chair, Dr. Carol Baker. It was both unexpected and disarming, and not a small accomplishment given the polarity of the debate. At the same time, there was a feeling of cognitive dissonance—this was not the public face presented by IDSA President, Dr. Ann Gershon—who, in the face of the ILADS submission of over 1,600 pages of scientific evidence contradicting the guideline recommendations, steadfastly maintains there is no evidence of persistence. So what gives? Is this a case of “good cop/bad cop”? Are perceptions deceiving? Is this all a matter of managing public perception? Putting on a public face?

Ever wonder what is going on with surveillance numbers? How come some states go up, up, up and others go down? If you look at Lyme surveillance in the US from 1990 to 2007 and just consider did cases go up or down, it can get pretty interesting. I don't know what to think when cases go down. Did all the ticks move out of dodge? Did the doctors quit diagnosing? Did people finally get the message and stay in doors with a book? Did the disease definition change? Is there a new department of health head? Did staffing go down? Did certain areas of the US just fall off the books because they were told there was no Lyme south of the Mason Dixie? I don't have answers. This is a list of those states that zigged when others were zagging. Tell me your thoughts.

Last Thursday, the historic review of the IDSA 2006 Lyme guidelines was held in Washington, D.C. Eighteen people presented arguments for and against the guidelines. We don’t know how the IDSA panel will act in the face of this deluge of previously suppressed information, but we do know that we have grown enormously as a community and that the skill-sets we developed on this project will continue to have a positive effect in the future.

I want to share with you a little of the background of the action and acknowledge people who have joined in this massive undertaking over this period. Many others have contributed, and I apologize if I have overlooked anyone’s contribution to this effort.

The IDSA Lyme disease guidelines review hearing on Thursday was an historic event both in medicine and in the Lyme community. It is the first time an organization has been required to hold hearings and review treatment guidelines that were created by a panel with conflicts of interest. It is also the first time that a broad debate of both sides of the Lyme controversy over diagnosis and treatment with physicians and researchers has been held.

Here's information about how to access different parts of the July 30 hearing.

We are providing blog updates of testimony throughout the day.
We will post frequent updates of the hearing testimony starting at 8 a.m. Eastern time. You can add comments at the bottom of this page. However, you must hit the refresh button on your browser periodically, so that you can see new postings and comments as they are added. If you keep this page open without refreshing it, you won’t see any of the updates.