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• Mass. governor narrows mandate on Lyme disease treatment

• By Susan Spencer
  Telegram & Gazette Staff

  
  Posted Jul. 12, 2016 at 6:52 PM
  Updated at 9:30 PM
  
  

  Gov. Charles D. Baker Jr. dampened hopes for mandating broad-based insurance coverage of extended antibiotic treatment for Lyme disease Friday when he sent back changes to a fiscal 2017 budget amendment. But he allowed a narrower scope of coverage for the controversial treatment when it is prescribed by certain medical specialists.

  Amendments attached to the state budget by state Rep. David P. Linsky, D-Natick, and state Sen. Anne M. Gobi, D-Spencer, would have required insurers to cover long-term antibiotic therapies when deemed medically necessary by a physician and experimental drugs for "off-label" uses for the treatment of Lyme disease.

  Off-label drug use means that a drug is used for a purpose that the U.S. Food and Drug Administration has not approved.

  The governor's action, which only mandates coverage for long-term antibiotic therapy when it is prescribed by a board-certified rheumatologist, infectious disease specialist or neurologist, brought criticism from Lyme disease sufferers who say that people who experience debilitating chronic symptoms are denied access to care.

  Health insurers and small business representatives objected to any mandates, which they say make health coverage more expensive.

  And physicians disagreed with limitations on specialists who could prescribe covered treatment, but supported the governor's rejection of mandated coverage for experimental therapies.

  "Obviously, I wasn't happy," Ms. Gobi said about the changes. "Lyme disease is a problem for a lot of people and it's not getting better."

  She said the requirement that patients see a medical specialist for covered treatment would increase costs and present more roadblocks.

  Lyme disease is the most prevalent tick-borne disease in the country, found most commonly in the Northeast and upper Midwest. It is caused by bacteria that are spread to humans through the bite of tiny, infected ticks, including deer ticks. Lyme disease can cause serious joint, heart or central nervous system problems if it is not recognized early and treated appropriately.

  According to the U.S. Centers for Disease Control and Prevention, in 2014 in Massachusetts there were 3,646 confirmed cases of Lyme disease and an additional 1,658 suspected cases. Worcester County reported 604 cases.

  A 2014 report by the state Center for Health Information and Analysis summarized that the majority of Lyme disease patients are successfully treated with a single or double course of antibiotic treatment, but an estimated 10 to 20 percent of patients have symptoms that last months or years, including fatigue, sleep disturbances, muscle and joint pain and cognitive deficits.

  Medical experts disagree about the effectiveness of long-term antibiotic use for chronic Lyme disease. According to the CHIA report, the CDC, National Institute of Allergy and Infectious Diseases, and Infectious Diseases Society of America hold that reported successes of long-term antibiotic use are more likely the result of the placebo effect, and rare but serious complications can result from such use.

  However, the International Lyme and Associated Diseases Society's guidelines state that "the management of chronic Lyme disease must be individualized, since patients will vary according to severity of presentation and response to previous treatment."

  The CHIA analysis estimated the insurance mandate for long-term antibiotic treatment would add up to 11 cents to the typical member's monthly health insurance premiums.

  Ms. Gobi said that it would have been easier if the governor had simply vetoed the amendment, which the Legislature could then vote to overturn.

  Instead, the House will have to reject the governor's amendment and then vote to approve the original language, which would then go to the Senate for action. If the Senate approves the original language, the governor would have 10 days to act on it, which would run beyond the Legislature's formal session ending July 31.

  The Massachusetts Medical Society had mixed concerns about the initial mandate, given the conflicting evidence for treatment, and changes made in the governor's amendments. While the medical society supported narrowing the mandate by removing reference to experimental and off-label drugs, it opposed limiting the mandate to treatment by certain specialists.

  "We believe that any licensed, qualified physician, including those in primary care, should be able to treat Lyme disease without inconsistent coverage for their patients," Dr. James S. Gessner, Massachusetts Medical Society president, wrote in a statement.

  Business and health insurance representatives said the governor's amendments didn't go far enough and would add to the financial burden of small businesses and taxpayers.

  William B. Vernon, state director for the National Federation of Independent Business, said the insurance mandate would fall disproportionately on small businesses and state and municipal employees, who are fully insured by health plans regulated under state insurance laws. He said 60 percent of workers in Massachusetts, mainly those in large corporations, are not covered by such mandates because their insurance falls under federal laws.

  "This is a controversial treatment," Mr. Vernon said, adding that the mandate would increase costs. "All these mandates are small, but 40 or 50 of them - they add up."

  "Health plans do provide coverage for Lyme disease," said Eric Linzer, spokesman for the Massachusetts Association of Health Plans, which opposes the mandate. "There is no scientific basis for it."

  Mr. Linzer said mandated benefit laws make it harder for people to find affordable health care coverage.

  Trish McCleary of Sturbridge, co-founder of the Massachusetts Lyme Coalition and Sturbridge Lyme Awareness of Massachusetts, questioned in a statement whether Mr. Baker, "who was once an insurance industry CEO, will allow insurance companies to dictate and define our access to affordable and necessary treatment here in Massachusetts despite years of public outcry."

  She continued: "The thought of amending a bill to the point where it no longer serves those it is intended to serve is irresponsible, to say the least."