Lyme Times

Rhode Island is the only state in the country requiring health insurance companies to cover longterm intravenous antibiotic treatment for Lyme-disease patients, no strings attached. The process stretched out over several years, with the creation of a Governor’s Commission on Lyme Disease, public hearings, an agreement with insurance companies, legislation with a sunset provision, and then finally, removal of the sunset provision. It was an epic journey and patient advocates finally struck the gold.

Rhode Island was the first state in the nation to pass legislation protecting doctors who treat people with chronic Lyme disease from prosecution by state medical boards solely for that treatment. Rhode Island was also the first – and to date, only – state to reach an agreement with a large insurance provider. The agreement stipulated that “neither Blue Cross nor the independent reviewer, shall contest, reverse or deny coverage based upon a physician’s order of long term antibiotic therapy solely on the ground that such treatment may be characterized as unproven, experimental, or investigational in nature.” The following article was published in the Summer 2002 issue of the Lyme Times, and is available in full in the CALDA archives.

The Lyme drama of 2001 was not confined to Washington, DC. In May the New England Journal of Medicine expedited publication for the Klempner trial, and in June major urban newspapers trumpeted the headlines, “Antibiotics don’t cure chronic Lyme disease.” The Fallon study was in danger of being terminated because of low enrollment, and Joseph Burrascano was in the middle of his battle with the Office of Professional Medical Conduct. Then we had 9/11 and the anthrax attacks.

Legislation intended to combat problems associated with Lyme disease can help, or it can exacerbate the very problems that it is intended to address. LDA president Pat Smith and CALDA executive director Lorraine Johnson provide you with a framework to think about legislative issues and discuss some of the pitfalls you should avoid. Last of a three-part article that was published in the Spring 2005 issue of the Lyme Times.

In March 2001, as planned, Congressman Smith (NJ) introduced the third version of the Lyme Disease Initiative (HR1254 ). The language was almost identical to the language of the previous LDI. Then came the thunderbolt. Instead of introducing a companion version in the Senate, as anticipated, on May 25 Senator Dodd (CT) introduced a totally different bill, the Lyme and Infectious Disease Information and Fairness in Treatment (LIFT) Act, S. 969. The coalition of 90 patient activists and groups who had been working on LDI for the past three years were stunned.

The Lyme Disease Initiative (LDI) of 1999 was 1,000 words longer than the 1998 version and packed with details from the community’s wish list. The Lyme wars had already begun. In July, 1999, a representative from the Office of Professional Medical Conduct, the doctor disciplinary arm of the New York Health Department, visited the office of Dr. Joseph Burrascano, Jr., asking questions about his practice. In 1999, Dr. Richard Horowitz of Poughkeepsie, another Lyme specialist, was dropped by Blue Cross/Blue Shield, leaving about 500 of his patients without means to continue treatment. [Lyme Times #26 ] In 1999, USA Today quoted American Lyme Disease Foundation executive director David Weld as saying that people like to have Lyme disease so they can talk about it at cocktail parties.

Legislation intended to combat problems associated with Lyme disease can help, or it can exacerbate the very problems that it is intended to address. LDA president Pat Smith and CALDA executive director Lorraine Johnson provide you with a framework to think about legislative issues and discuss some of the pitfalls you should avoid. First of a three-part article that was published in the Spring 2005 issue of the Lyme Times.

The first federal Lyme bill was introduced 11 years ago. The Lyme disease community still has not passed a federal Lyme bill. Why not? Learn about the history of Lyme legislation, the legislative process, and our own part in the drama. CALDA founder and president Phyllis Mervine shares experiences and insights from her decade of involvement with various reincarnations of the federal Lyme bills.