The Mayday Project, a Lyme patient advocacy group, is making waves in DC as it tackles the IDSA/CDC stranglehold on Lyme disease.After submitting a petition to End Preferential Treatment of the IDSA Guidelines for Lyme Disease to the CDC in October 2015, Mayday received a terse response from Beth P. Bell, MD, Director of CDC’s National Center for Emerging and Zoonotic Infectious Diseases (NCEZID), who declined to take action. Instead, she defended CDC’s preferential treatment, saying, “CDC believes that IDSA guidelines currently represent the best available synthesis of the medical literature on the diagnosis and treatment of Lyme disease.”
No surprise. But can each of us work together to make a difference? Can we try to change things in Washington so that others don’t suffer as we have? I think we have to try.
Allison Caruana of the Mayday Project asks, “How can these guidelines represent the best available synthesis of the medical literature? The IDSA guidelines are nine years old and non-compliant with Institute of Medicine (IOM) standards and the GRADE system for rating evidence. On the other hand, the guidelines from ILADS were published in 2014, are compliant with the IOM standards and GRADE, and have been accepted and published by the National Guideline Clearinghouse.”
The petition also condemns CDC’s preferential treatment of IDSA, which is a private organization, because it violates the Standards of Ethical Conduct for Employees of the Executive Branch, which states: “Employees shall act impartially and not give preferential treatment to any private organization or individual.”
On March 9, IDSA released a project plan to update its Lyme disease treatment guidelines; guidelines that already harm patients who are routinely misdiagnosed and unable to obtain medically necessary treatment due to the restrictions imposed by those guidelines. The IDSA plan provides a period for public comment, which ends April 24.
Mayday co-founder Josh Cutler says, “What’s most disturbing is that the 2015 IDSA review group contains members who are not coming to the task from neutral positions.” According to Cutler, “Six people involved in the 2015 guideline revisions helped co-author the 2006 guidelines. The seventh person led the internal IDSA review of those guidelines after a state investigation in Connecticut. These seven people, at the very least, have inherent intellectual conflicts of interest. In addition to authoring or reviewing the 2006 guidelines, they have continued to publish articles maintaining the view that there is no convincing evidence for the existence of chronic Lyme disease.”
Cutler identified the seven panelists as Linda Bockenstedt, MD; John J. Halperin, MD; Peter J. Krause, MD; Allen C. Steere, Jr., MD; Franc Strle, MD, PhD; Gary Wormser, MD; and Paul Lantos, MD.
“These seven should be removed from the panel and replaced by experts open to considering the abundant evidence for the existence of chronic Lyme,” Cutler said.
During a January 26-27, 2016 telethon, Lyme patients and advocates from more than 45 states called on their representatives and senators in Congress to compel CDC to end its preferential treatment of the IDSA guidelines and investigate how conflicts of interest have influenced Federal policy on Lyme disease.
The petition accomplished its main purpose, which was to bring the misconduct to the attention of top officials at CDC and HHS.
If you are concerned and outraged by this response, contact your representatives in Congress and request that they evaluate the allegations in the petition and let you know what actions they will take to address the issue. Make sure to identify yourself as a constituent and provide a link to the petition. You can copy and paste your correspondence into the online contact form on the website of your representative or senator. You can send the same request to your representative and both of your senators. If you just send it to one, send it to one of your senators. See sample and instructions here.
In response to CDC’s refusal to end its preferential treatment of IDSA, The Mayday Project has scheduled a solidarity rally May 19-20 at CDC headquarters in Atlanta.
Go to http://www.themaydayproject.org for more information.