LYMEPOLICYWONK: ILADS Calls on IDSA to Remove Barriers to Lyme Guideline Change

Why do we do what we do? Sometimes we win, but there are many, many (too many) bumps in the road on the way to success. How do we keep our perspective in the face of an adversary that seems unrelenting—vested, no entrenched, in a medical dogma that leaves patients on the side of the road? A medical society that believes that the views of patients are really–(really?) not relevant to the question at hand? I, for one, want to walk the road of other diseases that have been abandoned and forsaken by the medical establishment. But my road (and those of other illnesses), leads to success. And success–is all about the journey. Touching lives one by one until our day in the sun.

Over 6,100 responded to our IDSA survey within one month! That’s YOU being engaged. Everyone who has worked on this project has been deeply touched by your responses. In addition to answering our survey questions, over 1,700 patients offered their thoughts in a tiny comment box. I have to say, I was unprepared for the depth of responses offered. I know that those of us who reviewed the comments teared up. You may too.

In 2009 prior to the IDSA hearing, CALDA wanted patient voices to be heard and conducted a survey that drew over 4,000 responses. It ended up being the largest survey of Lyme patients ever conducted in the United States. Today, the results of this survey were published in Health Policy in a study by Johnson, Aylward and Stricker. Health Policy is a highly regarded peer-reviewed journal that explores health policy issues. This survey focused on 2,424 respondents whose clinical diagnosis was supported by positive test results. The study examines problems with access to healthcare and burden of illness, and it found that although patients with Lyme disease suffered a substantial burden of illness, they had significant barriers to healthcare access. Specifically, patients with Lyme disease had difficulty obtaining diagnosis and treatment for their illness, traveled great distances to receive healthcare, were turned down for health insurance based on their illness, and had difficulty receiving care at local hospitals.

LymeDisease.org’s recently published survey found that patients with chronic Lyme disease reported low quality of life. They had more days that were bad physically than the general population and than most other diseases. They suffer high rates of unemployment and disability. Even those who are able to work, often must stay home ill or reduce their hours. At work, many say they were unable to concentrate. The survey paints a graphic picture of lost productivity among those with chronic Lyme disease.

On May 1, 2008, the Connecticut Attorney General announced a landmark settlement against the Infectious Diseases Society of America in connection with its guidelines for treating Lyme disease. The IDSA guidelines are relied upon by insurers throughout the nation to deny seriously ill patients treatment for chronic Lyme disease. The Attorney General found substantial conflicts of interest among the panel members on the IDSA guidelines who held commercial interests related to diagnostic tests, vaccines, and insurance. In addition, the Attorney General found that the panel suppressed scientific evidence and excluded opposing views from the panel.