Lyme Patients Infiltrate IDWeek Medical Conference, Call on IDSA Members for Help

Lyme disease activists launched a back-to-back vigil and protest at the IDWeek medical conference to draw attention to their plight and call on the Infectious Diseases Society of America (IDSA) to update its controversial guidelines for Lyme.

While dozens of activists and supporters converged on the convention center for the Friday evening vigil and Saturday protest, Allison Caruana, Josh Cutler and Saby Molina of the Mayday Project activist group attended the conference. Once inside, they discussed concerns with attending scientists and physicians about improving the quality of care for Lyme patients.

“This epidemic is quickly spiraling out of control and there’s got to be an awakening,” says Cutler, who has been fighting chronic Lyme disease for nine years. “The IDSA Lyme guidelines are outdated, do not reflect current research, and are harming patients who are unable to receive proper care.”

IDSA is a private medical association made up of over 9,000 physicians, scientists and other healthcare professionals who specialize in infectious disease. They are responsible for creating the diagnostic and treatment guidelines for Lyme disease that are relied on by the Centers for Disease Control (CDC), the National Institute of Health (NIH), physicians, and insurance companies.

U.S. rates of Lyme disease have skyrocketed in recent years with the CDC announcing in 2013 that rather than 30,000 new cases annually there are likely 300,000. However, other Lyme experts estimate that there are likely 1 to 2 million new cases per year.

Large numbers of Lyme patients remain seriously ill despite receiving the IDSA recommended 2-to-4 week course of antibiotic treatment.

Emerging research highlighted in a recent webinar hosted by the CDC and NIH increasingly demonstrates that the Lyme infection persists past the recommended treatment.

A recently published study by John Aucott of Johns Hopkins University shows that over 30% of early diagnosed and early treated cases of Lyme disease continue to have ongoing illness and 11% of that number will continue to have severe, debilitating symptoms. Debilitation can include being homebound, bedbound, or wheelchair dependent.

This is the second protest of the IDSA initiated this year by The Mayday Project. The first was a two-day event held on May 22nd and 23rd at the IDSA headquarters in Arlington, Virginia.

Lyme disease patients also recently held a protest in September at the New York Times calling for more media coverage of the Lyme disease pandemic.

About the Mayday Project
The Mayday Project was formed by a group of volunteers who have been touched by Lyme in some way. They aim to raise awareness about chronic Lyme disease and related tick-borne illnesses. Mayday supporters advocate 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.

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