The state legislature has adopted a new bill requiring insurance companies to cover long-term antibiotic treatment of Lyme disease, despite considerable pushback from the medical and health insurance communities, and from Gov. Charlie Baker, who twice remanded the bill in the final weeks before the legislative session closed in July.
In covering the long-term treatment of Lyme disease, insurance companies must now cover experimental drugs as well, including for off-label use, as long as the drugs are approved (for any indication) by the Food and Drug Administration.
Governor Baker, a former health insurance executive, vetoed the bill in late July, citing a lack of medical evidence to support the mandate, and raising concerns about the coverage of experimental drugs. But the House and Senate held fast to their original language and adopted the bill almost unanimously in the last two days of the session.
Chronic Lyme has been the subject of much debate in the medical community, with two general camps emerging in the last 10 years. One argues for the treatment of Lyme symptoms for however long they last, while the other argues that long-term antibiotic treatment is ineffective and unproven to work. The new bill, which received final approval by the House on July 31, builds on an existing law that allows doctors to prescribe long-term treatment without censure.
Along with other tick-borne diseases, Lyme is endemic to the region, with Massachusetts having among the highest rates in the country — 3,830 confirmed cases in 2014, down from 4,028 in 2009. Island towns have among the highest rates in the state, with Chilmark
topping the list. And the actual numbers could be much higher, in part because the only official diagnosis — a red bull’s-eye rash at the point of infection — often doesn’t appear, and lab tests may come back negative either way.
Rep. David Linsky of Natick, who began working on the state bill about five years ago, called its passage a victory for the state. “This is an example of the House and Senate being extremely responsive to the many requests that we got from constituents from all over Massachusetts to do something to help those individuals and families that have been suffering with Lyme disease,” he told the Gazette.
Rep. Tim Madden and Sen. Dan Wolf, who represent the Cape and Islands, were among the more than 140 lawmakers that co-sponsored the bill.
“I think it’s a story of the transformative power of ordinary citizens to assert their dignity,” said Michelle Treseler, co-founder of the Massachusetts Lyme Coalition, who helped draft the current bill and has spent years lobbying for its passage. “Their legislators passed a really monumental vote for human decency.”
The final version of the bill includes an emergency preamble that puts it into effect immediately, although it also includes a sunset clause that will cause it to expire in November 2021. A similar bill that passed in Rhode Island in 2003 had a one-year sunset clause that was later repealed.
Governor Baker had introduced alternate legislation in July that would have required long-term antibiotic coverage only when considered medically necessary and ordered by a board-certified specialist such as a rheumatologist or neurologist. That version also removed the language related to experimental drugs, and delayed the start date to January 2017 to give stakeholders time to prepare. “While I support comprehensive coverage and access to Lyme disease treatment, long-term antibiotic therapy is not clinically recognized as an appropriate form of treatment,” Mr. Baker wrote at the time. “Further, requiring coverage of experimental drugs for off-label use sets a concerning precedent.”
The Massachusetts Infectious Diseases Society (MIDS) and the Massachusetts Association of Healthcare Plans (MAHP) were among the backers of the alternate bill, both pointing to a lack of clinical evidence to support the mandate as approved by the House and Senate. MIDS warned that the long-term antibiotic use “will generate more antibiotic-resistant bacteria that migrate to the general public thereby exacerbating a rapidly-growing public health crisis.”
MAHP vice president Eric Linzer drew attention to clinical evidence, cited by groups including the Centers for Disease Control and Prevention, that long-term antibiotic treatment for Lyme may come with serious complications. “Couple that with the concerns that local experts have raised about this, and it really should have given legislators a moment of pause before passing this law,” Mr. Linzer said.
State-mandated insurance benefits affect only about 40 per cent of the commercial market, he added, since larger companies can self-insure. “When we pass a mandated benefit bill, it falls — and disproportionately falls — on small and mid-sized businesses, adding to their healthcare costs,” he said.
But Ms. Treseler noted similar opposition to the bill in Rhode Island, noting those fears never played out. “Despite insurers’ objections there, the sky didn’t fall,” she said. “The only discernible outcome was that sick people were able to get their physician-prescribed treatment. And many of them get well.”
She said thousands will benefit from the new bill in Massachusetts. “Many families will no longer be in the position of deciding whether to forego medical treatment or losing their home,” she said. “And business will benefit as a result of less absenteeism and workers having to be on disability.”
Looking ahead, the Massachusetts Lyme Coalition plans to shift its focus from legislation to disease prevention, including the use of landscaping and appropriate outdoor clothing to reduce the risk of tick bites. Efforts on the Island have recently turned to a discussion about deer culling to reduce the number of ticks, since deer provide food and habitat for the breeding adults. A survey launched this week by the Gazette aims to gauge public opinion on the seriousness of the problem and possible tick reduction strategies.
Meanwhile, Mr. Linsky did not see the need for additional legislation related to chronic Lyme disease treatment in the foreseeable future. “The health insurers are required to cover these treatments,” he said. “It is really in the hands of physicians and patients, and that’s where it should be.”
Gazette Survey
The Vineyard Gazette has launched an online survey aimed at exploring community attitudes about the seriousness of the tick problem, and testing public opinion about various remediation efforts. The survey is being done by the newspaper in cooperation with the Island boards of health and leading biologists who are studying tick diseases on the Vineyard. Go to this link to participate in the survey.
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