TOUCHED BY LYME: "Advancing science, improving care"? I don’t think so, IDSA.
The IDSA opens its annual meeting with a slogan that rings false for Lyme patients.
The Infectious Diseases Society of America has opened its five-day annual meeting at the San Diego Convention Center, under the banner “IDSA: Advancing science, improving care.” Unfortunately, in the case of Lyme disease, the IDSA has been all about rejecting science and denying care to Lyme patients.
A quick re-cap for anybody who’s just tuning into this issue: Untold thousands of Lyme patients across the US are denied access to appropriate medical care because of the IDSA’s Lyme treatment guidelines. (Although the IDSA is a private medical association that doesn’t have to answer to anybody, the CDC essentially allows the group to set national health policy regarding Lyme disease.)
Medical treatment guidelines are tremendously important. The government lists them on something called the National Guidelines Clearinghouse (NGC). Doctors consult them to help determine how to treat their patients and insurance companies use them to decide what treatments to pay for.
The current IDSA Lyme treatment guidelines misrepresent science and restrict access to care. They define the disease so narrowly that many people with Lyme are denied treatment entirely. And those given treatment are usually limited to a short course of antibiotics even when they remain ill.
Furthermore, the guidelines are out-of-date. Although the NGC’s own policy is that medical guidelines should be updated every five years, to reflect current science, these guidelines have been making Lyme patients miserable since 2006. And, in those intervening years, there have been significant scientific findings that should be reflected in the guidelines but are not.
As a Lyme support group leader, I see the results of this first-hand. Previously healthy individuals find themselves sick and in pain, with bone-crushing fatigue, experiencing a wide variety of other debilitating symptoms, often barely able to walk or even get out of bed unassisted. Yet, based on the guidelines, their doctors tell them there’s “nothing wrong” and show them the door. And insurance doesn’t have to pay for treatment when you’re not sick, right?
Sick children are missing school, adults are too debilitated to work, marriages break up under the strain, people lose their homes. Patients scramble to pay out-of-pocket for medical care from the few doctors who are willing to treat Lyme outside of the IDSA-guidelines box.
LymeDisease.org and other advocacy organizations have tried to work with the IDSA and the CDC. Pointed out all the valid, peer-reviewed medical studies that the writers of the IDSA guidelines chose to ignore. Research that shows Lyme persists beyond a few weeks of treatment, studies that show longer treatment can help restore people to health. To no avail.
This Saturday, Lyme patients and their advocates will hold a protest rally across from the San Diego Convention Center. If you can join us Saturday, wear lime green if possible.
If you can’t join us, why not take a picture of yourself holding a sign that says “IDSA—Revise the Guidelines” (or a message of your choosing–keep it clean!) and upload it to our Facebook page? Or else email the digital photo to: email@example.com and we’ll post it for you.
In the meantime, a generous donor has paid for the mobile ad shown in the picture. That truck will circle the convention center starting today, highlighting the IDSA’s failure to help Lyme patients.
Will anyone pay attention?
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at firstname.lastname@example.org.