State legislators are strongly backing a bill that would require insurance companies to cover the long-term treatment of Lyme disease. Filed by Rep. David Linsky, a Democrat from Natick, and Sen. Anne Gobi, a Democrat from Spencer, the bill is now working its way through committee and may land on the house and senate floors by July.

The 140 cosponsors of the bill represent about 70 per cent of all state legislators, including Rep. Tim Madden and Sen. Dan Wolf, who represent the Cape and Islands. The joint committee on financial services, which includes many of the cosponsors, gave the bill a green light on Wednesday.

“This bill has been a long time coming,” Mr. Linsky told the Gazette on Tuesday, recalling his efforts several years ago to form a commission to look at Lyme disease treatment in the state. Among other things, the commission recommended in 2013 that Lyme disease insurance coverage should be mandated in the state.

Bill would mandate insurance coverage for treatment of chronic Lyme disease.

Mark Lovewell

Bill would mandate insurance coverage for treatment of chronic Lyme disease.

Mark Lovewell

Chronic Lyme disease, also called post-treatment Lyme disease syndrome, has been the subject of much debate in the medical community. In the last decade, two camps have emerged, one recommending that treatment should be based on symptoms for however long they last, and the other arguing that long-term antibiotic treatment is ineffective and unproven to work. House bill 901, an act relative to Lyme disease treatment coverage, would build on an existing law that allows doctors to prescribe long-term treatment without censure.

“It basically says doctors, not insurers, should decide medical care,” said Michelle Treseler, a chronic Lyme patient and co-founder of the Massachusetts Lyme Coalition, who helped rewrite the bill after it died in committee last year. “Unfortunately, there are many people with Lyme in Massachusetts who are not only battling for their lives against Lyme disease, but also for access to their doctor-prescribed medications.”

The version of the bill approved on Wednesday includes a provision that the bill will expire in November 2021. “The logic behind that is that the science around this and the research is changing so rapidly that it will make sense to revisit it at that time,” Mr. Madden told the Gazette. In general, though, he felt the bill had a better chance of passing this year than last year, in part because of a growing awareness of the issue.

Massachusetts has among the highest incidence of Lyme disease in the country, with 5,600 cases (more than ever before) reported or suspected in 2014. Chilmark has had more cases of Lyme disease than anywhere else in the state, followed by Nantucket, Aquinnah and Tisbury. Edgartown and West Tisbury are also high on the list.

The state Department of Public Health estimates that reported cases could be underestimated by a factor of 10, possibly raising the figure to more than 50,000 cases in the state last year, and more than 3,000 in Dukes County. A study by the University of Massachusetts in 2010 found that more than 1,000 antibiotic prescriptions had been filled for Lyme disease on the Island, despite only 25 reported cases in Dukes County.

Medical experts have struggled to get a handle on Lyme disease diagnoses, and chronic Lyme in particular. The Center for Health Information Analysis noted last year that between 10 and 20 per cent of all Lyme patients remain sick for months or years after initial treatment, but that a clear way to detect the long-term presence of the disease does not exist. The Centers for Disease Control and Prevention is among the groups that see long-term treatment as working more as a placebo than as a result of antibiotics.

Opponents of the new bill point to the lack of consensus around long-term treatment, although Mr. Linsky disputed that the bill was not backed by medical evidence. “There have been many patients that have been successfully treated with this type of treatment,” he said, adding that insurance premiums would increase only up to 13 cents per patient, and possibly not at all. The 2013 report noted that chronic illness accounted for 84 per cent of Lyme healthcare costs, due mostly to lost productivity.

Chilmark has highest rate of Lyme disease in the state.

Chilmark has highest rate of Lyme disease in the state.

The Massachusetts Association of Healthcare Plans, which spent almost $400,000 last year on lobbying efforts in the state, has pressed hard against the bill, which it argues will disadvantage small businesses that are forced to offer the new benefits.

“I think what we’ve seen in the past, when the state mandates specific services and it’s not consistent with medical evidence or later turns out to be inconsistent with scientific research, that’s ultimately bad for consumers,” association vice president Eric Linzer told the Gazette. “As the state continues to impose new mandates on health insurance, it disproportionately affects small businesses because larger businesses are able to self-insure and in turn don’t have to cover those mandated benefits.”

Mr. Linsky said fears over yet another healthcare mandate were overblown. “It’s hard to dispute a mandate that costs no more than 13 cents a year,” he said. He added that while some still question the science, “this is really a patient-choice bill, where it doesn’t require any type of particular treatment but it gives patients the option.”

Many insurers deny long-term coverage based on guidelines developed by the Infectious Diseases Society of America, which Ms. Treseler said were themselves a source of controversy. An investigation by the state of Connecticut in 2008 found that the society had excluded contradictory evidence and opinion in developing its guidelines. And the National Guidelines Clearing House, a federal database, recently delisted the society guidelines, which did not comply with its revised standards.

Despite the efforts of lobbyists, Ms. Treseler said there were few opponents of the bill. “To be honest, we haven’t heard much at all, and we are in pretty much constant contact with the legislators,” she said. About 200 people, many of them Lyme patients, attended a public hearing on Oct. 20 and many voiced support for the bill.

“We’ve engaged up to 7,000 people on a weekly basis through Facebook alone,” Ms. Treseler added. “There has been incredible grassroots support for this bill.”

But misperceptions about chronic Lyme are still an obstacle, Ms. Treseler said. Her own illness, which she contracted as a graduate student in public health in 2009, was a personal education and a call to action. As with many others, she still struggles with chronic symptoms and has faced limited insurance coverage.

“It’s been a real battle,” she said.