Lyme advocates take fight for reform to capital

Lyme patients and advocates from across the U.S. will gather for a “We the People” rally at the U.S. Capitol on May 19. The next day, simultaneous solidarity rallies will be held at the Infectious Diseases Society of America (IDSA) headquarters in Arlington, Va., and at the Centers for Disease Control and Prevention (CDC) headquarters in Atlanta.

The events are organized by the Mayday Project Lyme patient advocacy group in collaboration with advocates and advocacy groups throughout the U.S. They are calling for Congressional oversight of CDC’s Division of Vector-Borne Diseases, which is responsible for policy on Lyme disease, according to Mary Jane Heppe of Hood River, a board member with Oregon Lyme Disease Network

There has been an ongoing battle between the Infectious Disease Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS) regarding Lyme disease, according to Heppe, who is co-leader, Mid-Columbia Lyme Support Group and a national patient advocate.

The IDSA does not believe in chronic Lyme disease and claim that it is “hard to catch and easy to treat,” she said. The ILADS group believes in chronic Lyme disease and that it is “easy to catch and hard to treat.” Oregon health regulations currently require doctors to follow the IDSA guidelines, which has made it difficult for many patients in Oregon to get diagnosed in time to prevent chronic illness.

“Ironically last February the National Guideline Clearinghouse (NGC) removed these guidelines which date back to 2006; the NGC felt they were outdated,” Heppe said. “Experts say that removing the old guidelines could open the door to better treatments such as those currently recognized by ILADS. Let me add that many doctors will prescribe a very long course of antibiotics for acne, and tuberculosis requires at least six months of antibiotic therapy. No one fusses about that, but there remains this huge fuss about therapy for chronic Lyme.”

New guidelines will allow doctors to exercise more freely their own clinical judgment. “This could be a breakthrough for Oregon if our own outdated guidelines are amended.” according to Heppe, who added that there are no MDs who treat chronic Lyme in Hood River,

May has been designated “Lyme disease Awareness Month” again this year. Gov. Kate Brown first issued the Proclamation last May for the State of Oregon.

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