In another post, I pointed out problems with the composition of the IDSA panel—namely, that the IDSA panel is biased toward the IDSA perspective because physicians who treat chronic Lyme were entirely excluded and some of the panel members have known biases. A number of patients have contacted me who want to do something. This post will let you know who, what, and where you can write to have the best chance of getting your voice heard.

In another post, I pointed out problems with the composition of the IDSA panel—namely,  that  the IDSA panel is biased toward the IDSA perspective because physicians who treat chronic Lyme  were entirely excluded and some of the panel members have known biases.   A number of patients have contacted me who want to do something.  This post will let you know who, what, and where you can write to have the best chance of getting your voice heard.

 Bear in mind, some things can be helpful and some can be harmful to the process.  For instance, contacting individual panel members is not a useful thing to do at this point.  Letters to this group would not change the constitution of the panel and might appear to be no more than a tactic of harassment.  We would like to avoid agitating this group because it may actually create or increase the very type of bias we would like the panel to be free of.  I would say the same with the ombudsman, who will have an on-going role in this process.  

The best way to make your views known would be to write the IDSA and send a copy of your letter or email  to the Connecticut Attorney General.  The AG wants to know your views and also needs to stay focused on the task at hand, so they may not be able to individually respond to patient letters or emails.

Letters to the IDSA should be addressed as follows:

Jennifer Padberg, MPH, Director of Clinical Affairs

1300 Wilson Blvd
Suite 300
Arlington, VA 22209

jpadberg@idsociety.org.

Send a copy of your letter or email to the Attorney General at:

Office of the Attorney General
55 Elm Street
Hartford, Connecticut 06106

attorney.general@po.state.ct.us

Some points you could make:

1. Treating physicians, who were entirely excluded from the panel, should be included on the panel.  These physicians understand what works and doesn’t work in the field.  They may also be required to comply with guidelines that they had no voice in developing.  By excluding treating physicians, the panel is also assuring that patient concerns will not be represented. 
2. 7 out of remaining 9 panelists are IDSA members.   This is not a balanced panel.
3. Dr. Arthur Weinstein, who has written Lyme disease guidelines in the past and who is known to have a bias against patients, should never have been selected for the panel.
4. Dr. Carol Baker, who was a past IDSA president and who developed the guidelines in the Redbook, should not be on the panel.
5. Physicians with known biases against treating patients with Lyme disease should not be on the panel.

Tips:

Keep the tone of your letter civil, respectful and polite.

Keep your letter short—no more than a page.

Keep your message on point.