Our March 2015 patient survey drew over 6,100 responses. Survey results were incorporated into our formal submission to the Lyme guidelines panel of the Infectious Diseases Society of America. We will also share this information with lawmakers, health officials, and journalists. Click here to read the results.

Too often, healthcare policy makers are unaware of the many ways that Lyme disease seriously affects patients, their families, their communities, and ultimately the whole nation. In order to bring the perspective of Lyme disease patients to the forefront, we conduct nationwide surveys of Lyme patients. We share that information with lawmakers, journalists, and others in the healthcare arena. We give voice to the Lyme patient community.

In January, 2015, we conducted a survey on the Food and Drug Administration’s proposed restrictions on Lyme testing. We included survey results when we talked to the FDA about how much the proposed regulations would harm Lyme patients.

The results of two earlier surveys have been published in peer-reviewed journals.

The first one, looking at access to care and burden of illness was published in Health Policy in 2010. It revealed that 65% of patients with chronic Lyme disease have had to cut back or quit work or school and 25% have been on disability.

The second one, published in PeerJ in 2014, examined health-related quality of life using standard Health Related Quality of Life questions from the Centers for Disease Control and Prevention. It found that chronic Lyme disease is associated with a worse quality of life than most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis.

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