Lyme Patient Advocates Meet with IDSA President, Discuss Concerns About Guidelines Review Process

Representatives from The Mayday Project Lyme patient advocacy group met with Infectious Diseases Society of America (IDSA) President, Dr. Stephen Calderwood, on Friday, March 20, to discuss concerns about the IDSA’s guidelines for diagnosis and treatment of Lyme disease

The 90-minute meeting took place via teleconference and was attended by Mayday Project co-founders Josh Cutler and Allison Caruana, along with lead researcher Saby Molina. According to Cutler, this was the first time the IDSA leadership has met with a Lyme patient advocacy group.

The meeting was the culmination of a series of multi-day, boots-on-the-ground protests backed by an aggressive publicity campaign that generated favorable coverage from a wide range of media outlets, including Medscape Medical News, Fox News, and Infectious Disease: Special Edition. In addition to media coverage, Mayday’s press releases generated more than 500,000 headline impressions and were shared on Facebook pages with more than 50 million collective likes.

The campaign began with a two-day protest May 22–23, 2014, at IDSA headquarters in Arlington, VA. A follow-up candlelight vigil and protest were held at IDSA’s IDWeek medical conference in Philadelphia, October 8–12, 2014. Mayday members purchased passes and attended the conference to learn more about IDSA members’ viewpoints and provide them with references to relevant science about chronic Lyme disease

During IDWeek, Mayday released an open letter to IDSA members calling on them to intervene on the behalf of patients to help rectify the guidelines in the interest of improving patient care. The letter called on the IDSA leadership to work with a sense of urgency to develop a national action plan to stem the rapidly spreading epidemic of Lyme disease and related tick-borne illnesses

Following IDWeek, the Mayday Project established a dialog with then President-elect Calderwood and began a cordial, yet frank and persistent, correspondence focused on correcting deficiencies with the current guidelines, and more recently on addressing concerns with IDSA’s project plan to update the guidelines that was announced on March 9. The plan includes a 30-day period for public comments

Prior to the March 20 meeting, the Mayday Project conferred with leaders within the Lyme Community for suggestions on concerns, requests, and questions to be presented to Dr. Calderwood that best represented the interests of Lyme patients and the physicians who treat them.

Following the meeting, Cutler posted on the Mayday Project’s Facebook page that Dr. Calderwood was receptive to Mayday’s concerns and agreed that much is still unknown about Lyme disease, that current testing methods are unreliable, and that better diagnostic tools are needed.

According to Cutler, Dr. Calderwood agrees that Lyme disease is underreported and represents a large-scale, national epidemic that needs much more research and attention

Mayday expressed strong concerns about the inclusion of panelists with significant conflicts of interests, especially with those who also coauthored the 2006 guidelines. The Lyme Disease Association report, Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination and Treatment Guidelines, documents the most serious conflicts of interests among past and current members of IDSA’s review panels.

During the meeting, Cutler asked Dr. Calderwood to write a letter to Congress requesting more Federal funding for research.

Lack of research money is a major impediment to containing the epidemic of Lyme disease and resolving the debate over the prevalence of persistent infection following the antibiotic treatment recommended by the current IDSA guidelines. This is often referred to as Chronic Lyme disease.

In FY2014 NIH funding for Lyme was just $23 million—barely 1 percent of the $1.9 billion in NIH funding for emerging infectious diseases. By comparison, Federal funding for HIV/AIDS during the same period was $2.9 billion, despite the incidence of Lyme being magnitudes greater at up to 1 million new cases per year, compared to approximately 50,000 new cases of HIV/AIDS.

Dr. Calderwood agreed that more research money was needed but did not commit to writing a letter to Congress.

Mayday also requested that Dr. Calderwood push for additions to the review panel that would better represent the interests of Lyme patients, including representatives from patient support groups, physicians in private practice who specialize in treating tick-borne illnesses, psychiatrists who treat patients with Lyme disease, and at least one patient with a persistent infection.

Cutler gave the following account of Mayday’s attempts to address concerns regarding the lack of balance and conflicts of interests within the Guidelines Review Panel:

“Dr. Calderwood asked that Mayday direct its requests to the public forum IDSA created for comments on the project plan for updating the guidelines. He essentially declared we must wait for the review of the public comments to be completed to see if there will be any changes to the panel for revising the guidelines. We informed Dr. Calderwood that based on the outcome of the meeting we would continue with our plans for the protest at IDSA’s headquarters on April 30 and May 1.”

The day after the meeting, the Mayday Project received encouraging correspondence from Dr. Calderwood.Mayday co-founder Allison Caruana wrote in a subsequent Facebook post that, based on the meeting and his follow-up correspondence, Dr. Calderwood seemed truly open to “discussing and working on solutions to the community’s greatest concerns.”

In addition, according to Caruana, Dr. Calderwood requested suggestions from patients about the types of questions they would like to see addressed in the revised guidelines.Examples include the impact of Jarisch-Herxheimer reactions, the benefits of detoxification, the advantages of integrative medicine, and the effectiveness of alternative treatments.

In the same post, Caruana reported:

“”We are focusing our attention to working with the IDSA to advance improvement of patient rights, and to make changes to the panel that will be reviewing the guidelines. Our strategy is to continue developing a working relationship with the IDSA that addresses the community’s concerns.

We ask for your continued effort to maintain a positive outlook and focus on the achievements already made. It is important to us that we look at how far we have come and not how far we still have to go. One step, regardless of how small right now, is a step in the right direction. Remember, a journey of a thousand miles starts with the first step. We are beyond our first step, but our journey is still a long one. So patience and optimism will be the hallmarks of our approach to dealing with these discussions"

Mayday encouraged patients who submit comments about the project plan to include a request to add a patient to the review panel who represents the Lyme community, along with at least one independent doctor who specializes in treating patients with Lyme disease.

The Mayday Project encourages those who submit comments to organize and spell-check them in a word processor before submitting them via IDSA’s on-line survey form, because the form must be filled out in one sitting. All comments should include the page and line numbers the comment applies to.

People who have already submitted comments do not have an option to revise them, but these and all other patients are encouraged to forward comments to the Mayday Project so they can be compiled and sent directly to IDSA’s leadership.

Cutler and Caruana expressed optimism about IDSA’s willingness to continue the dialogue, while clearly stating Mayday’s intent to continue to organize protests until the guidelines are updated to promote the quality of care patients deserve.

About the Mayday Project
The Mayday Project was formed by a group of volunteers who have been touched by Lyme disease. Mayday advocates for more accurate tests, better guidelines, improved access to treatment, increased education for physicians, and more funding for research. For more information visit www.themaydayproject.org.

References:

The Infectious Diseases Society of America Lyme Guidelines: a Cautionary Tale About the Development of Clinical Practice Guidelines
http://www.peh-med.com/content/5/1/9

Severity of Chronic Lyme Disease Compared to Other Chronic Conditions: A Quality of Life Survey
https://peerj.com/articles/322

Proof That Chronic Lyme Disease Exists: Daniel J. Cameron
http://www.hindawi.com/journals/ipid/2010/876450h

Findings of Richard Blumenthal’s Anti-Trust Investigation of IDSA
http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

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