• Local families fighting for Lyme disease insurance coverage

    Updated:

    (MyFoxBoston.com) -- Some got emotional during a fight for insurance coverage for long-term Lyme disease Tuesday. 

    There are thousands of new Lyme disease cases diagnosed each year in Massachusetts and the problem is serious. Many end up dealing with effects of the disease for years. Political Reporter Sharman Sacchetti was on Beacon Hill for Tuesday's hearings. 

    The CDC says Mass. has the second highest rates of Lyme disease in the nation, second to Pennsylvania. The question is, in cases where they may become chronic, who pays?

    Donna Castle of Ayer came down with Lyme disease, but her daughter "was diagnosed in 2005 with ALS and we were told she had about a year to live."

    Donna got a second opinion and learned like her, her daughter also had Lyme disease. Since she was misdiagnosed, Donna had to fight with her insurance to cover antibiotics beyond 30-days.

    "Delaying treatment because insurance companies were denying coverage really caused my daughter to become disabled," she said.

    At the State House she testified in favor of bills that would force all insurance companies to cover long term treatment for chronic Lyme disease. Right now the federal government only recommends short term antibiotics, about a month's worth.

    Advocates say states need to step in, because the testing is not 100-percent, and new data is always coming in.

    Dr. Jeanne Hubboch said, "We've seen people improve with prolonged antibiotic therapy."

    Eric Linzer, who represents the Massachusetts Association of Health Plans calls this dangerous territory.

    "When you start mandating medical practice into statute, that doesn't comply with evidence based medicine. It becomes bad medicine," he said.

    He also argues this would be expensive.

    "We like many business groups are concerned about the state imposing new and additional mandated benefits that ultimately lead to higher costs for small businesses," he said.

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