Lyme disease victims in Massachusetts lobby for long-term coverage

A deer tick sits on a leaf. The blood-sucking insects spread Lyme disease and the rarer babesiosis, which can be fatal.

BOSTON - Donna Castle fought for years to get private insurers to pay for long-term treatment of her daughter's Lyme disease, a tick-borne illness that left her disabled.

Her daughter, Amanda, was bitten by a tick in grade school, but the family didn't realize she had contracted the disease until years later.

Finally diagnosed in 2005, Amanda went through several rounds of antibiotics, which her mother said improved her condition, but Castle said their insurer refused to cover treatment beyond that.

As a result, she said, Amanda had serious complications - pain, fatigue and neurological damage. Now 35, Amanda uses a wheelchair.

"If they had continued to treat my daughter with antibiotics, she would be walking today," said Castle, of Ayer. "She desperately needed that treatment, and the insurance companies wouldn't cover it. My daughter will never be the same as a result."

Lyme disease patients who suffer chronic symptoms look to long-term antibiotics for help, but often they lose support of insurers who are only willing to pay for the short term. Others face challenges convincing skeptical physicians to approve treatment.

Patient advocates have lobbied Beacon Hill for years to force insurers to expand coverage of Lyme disease, but legislation has languished under opposition from the healthcare industry.

That could soon change with proposals tacked onto the Senate and House versions of the upcoming state budget that would require insurers to cover long-term antibiotic therapy and other experimental treatments for Lyme disease.

Even if the measure doesn't survive budget negotiations or Gov. Charlie Baker's veto pen, a similar bill with broad, bipartisan support could be taken up by the end of the legislative session in July.

Most private insurance companies and government subsidized health plans limit coverage of antibiotics to a 28-day period. Patient advocates including Castle say that prevents those who need prolonged treatment from getting help.

"The reality is insurance companies don’t want to pay for additional coverage because it costs them money," said Susan Fairbank-Pitzer, of Danvers, a patient advocate whose daughter has struggled with the long-term effects of Lyme disease for years.

Those arguments are beginning to win over lawmakers, who so far have been reluctant to change the law. Building momentum for the shift is the fact that many legislators know of someone who has suffered from the illness.

"It's a huge problem, and left untreated it can become very serious health issues," said Rep. Brad Hill, R-Ipswich, who has had Lyme disease and whose largely rural North Shore district has been hit hard by the illness. "I understand the concerns about healthcare costs and mandates, but we need to make sure that people are getting the care they need."

Spread by ticks, Lyme disease causes rashes and flu-like symptoms in early stages and can lead to more serious complications. Those suffering from it describe crippling pain and fatigue, muscle spasms, headaches and other maladies.

The medical community recognizes the disease, but opinion diverges over whether it persists for more than a few weeks after an initial round of antibiotics. Chief among the skeptics is the Massachusetts Association of Health Plans, representing insurers.

“From a clinical standpoint, there is no scientific evidence to support the diagnosis of chronic Lyme disease,” said Eric Linzer, a spokesman for the association. “There’s simply no evidence that the prolonged use of antibiotics will lead to better outcomes for patients. It’s just bad medicine.”

The state’s insurers follow guidelines from the American College of Rheumatology, Linzer said. It recommends against long-term antibiotics for Lyme disease, citing worries about the overuse of antibiotics.

The Massachusetts Medical Society also opposes requiring insurers to provide long-term coverage.

Spokesman Rick Gulla said the society, which represents about 25,000 physicians, has a “discomfort with the level of clinical management of the treatment of an infectious disease by the Legislature, especially an area with such limited scientific and clinical consensus.”

There is also pushback from the state's business community, which said costs of state and federally mandated healthcare coverage inevitably get passed onto employers because of government-mandated benefits.

"We keep getting hammered with these state mandates, which disproportionately impact small businesses," said Jon Hurst, president of the Massachusetts Retailers Association.

Rep. Ted Speliotis, D-Danvers, a veteran lawmaker who has tried for nearly a decade to press insurance companies to pay for extended coverage, said he believes this is the closest the proposal has ever come to passing the Legislature.

A previous review by the state's Center for Health Information and Analysis found that extending insurance coverage for Lyme disease treatment to 18 months would only cost an average of 3 cents per premium, he said.

"I'm hoping that after all these years that something gets passed," Speliotis said. "We've been fighting for this so many years."

Patient advocates say if changes are approved, a 2010 state law would protect physicians from being professionally sanctioned if they prescribe long-term antibiotic treatment.

Castle's daughter eventually got coverage, but not until she hired a lawyer to press her insurer in court. Amanda no longer has the disease, but Castle said the long-term effects left her permanently disabled and unable to work.

"We had to push and fight to get them to cover it," she said. "But it was too late. There was so much irreparable damage."

The costs of long-term antibiotic treatment can run up to $5,000 a month, which most people can't afford, said Fairbank-Pitzer, the patient advocate.

“It’s extremely shortsighted because in the end these people end up with more health care costs when other systems in their bodies become involved,” she said. “We don’t think insurance companies should be dictating what kind of care patients get.”

The prevalence of Lyme disease, first detected in Connecticut in the 1970s, has exploded in recent decades.

There were 3,830 confirmed cases in Massachusetts in 2014, according to the latest data from the Department of Public Health. There were 319 cases in Essex County that year.

Within the North of Boston region, Andover has been hardest hit, with 208 confirmed cases between 2010 and 2014, according to heath officials.

Haverhill had 171 cases during that period, while North Andover had 141. Ipswich reported 108 cases.

More than 96 percent of confirmed Lyme disease cases are in the Northeast and Upper Midwest, according to the U.S. Centers for Disease Control, and Massachusetts has the third-highest rate of any state.

State health officials haven’t taken a position on long-term treatment but say the disease's spread has reached “epidemic” levels.

The state spends $10 million a year on spraying and other mosquitoes-control programs, but it only spends $60,000 to monitor tick borne illnesses.

In other states, advocates of long-term antibiotic treatment have won legislative support for expanded insurance coverage . They include Rhode Island, Connecticut and New Hampshire. Bills in Vermont and New York would protect doctors for prescribing long-term antibiotics for patients with lasting symptoms.

Baker, a former healthcare executive, hasn't said where he stands on the issue, but he has expressed frustration with the practice of lawmakers tacking policy changes onto the state's annual spending package.

"I think those issues are best handled through the processes that are already in place to deal with them," he said recently. "Frankly, I think it's good government to separate them, unless the policy is tied directly to the budget."

Advocates say they hope Baker views the issue with the same empathy he did for people suffering from opioid addictions. He has cited the stories of addiction that he heard on the campaign trial, and later as governor, as shaping his views of that issue.

"I hope he understands how many people's lives have been ruined," Castle said. "This, also, is a serious public health crisis."

Christian Wade covers the Massachusetts Statehouse for the North of Boston Media Group's newspapers and websites. Reach him at

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