BOSTON — 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 short-term treatment.
Rep. Ted Speliotis, D-Danvers, has tried for nearly a decade to press insurance companies to pay. But his bill requiring coverage for antibiotics prescribed by a physician has languished under opposition from the health care industry.
The Lyme disease bill got a major endorsement last week from a state financial panel that concluded the cost of extending coverage would be minimal to the state and insurers. It still must be approved by the Legislature.
“Lyme disease is often misdiagnosed and many people suffer for very long periods of time before they are diagnosed and treated properly,” said Speliotis. “But our current laws fall short in ensuring that people get covered for the long-term treatment they need.”
The medical community recognizes Lyme 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.”
Most companies limit coverage of antibiotics to a 28-day period.
Linzer said the costs of state and federally mandated health care coverage weigh heavily on employers, and those costs increase because of government-mandated benefits.
The state’s insurers follow guidelines from the American College of Rheumatology, he said. It recommends against long-term antibiotics for Lyme disease, citing worries about overuse of antibiotics among other public health concerns.
Susan Fairbanks-Pitzer, who leads a North Shore support group for Lyme patients, disagrees.
“There is scientific evidence,” she said. “The reality is the insurance companies don’t want to pay for the additional coverage because it costs them money. They’re basically nickel and diming people.”
Many Massachusetts families have been cut off from coverage, she said, forcing them to pay the entire cost of long-term antibiotic treatment, which can run more than $5,000 a month.
“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.”
Spread by ticks, Lyme disease often causes rashes and flu-like symptoms in early stages and can lead to more serious complications if left untreated.
A single or double course of antibiotics successfully treats the majority of patients. But an estimated 10 to 20 percent can suffer symptoms — including fatigue, sleep disturbances, muscle and joint pain — for months or years after, according to the National Institute for Allergy and Infectious Disease.
Advocates of long-term antibiotic treatment have won legislative support for expanded insurance coverage in states including Rhode Island, Connecticut and New Hampshire. Bills in Vermont and New York would protect doctors from punishment for prescribing long-term antibiotics for patients with lasting Lyme disease symptoms.
Nationwide, the number of cases of Lyme disease has held relatively steady over the past few years, according to the U.S. Centers for Disease Control and Prevention. Patient advocacy groups and federal agencies say they expect this spring, summer and fall to be active seasons for ticks and Lyme.
Massachusetts health officials — who haven’t taken a position on long-term treatment — say Lyme disease has reached “epidemic” levels in the state.
In 2012, the state reported the fifth-highest rate of confirmed cases in the nation, the CDC said.
The most recent data show 3,342 confirmed Lyme disease cases in Massachusetts, and 1,708 probable cases, reported in 2012. That was a 19 percent increase from the previous year.
Parts of Essex and Middlesex counties report the state’s highest levels of Lyme disease. There were 505 confirmed and probable cases in Essex County in 2012 and 774 in Middlesex County, according to the Department of Health.
Christian M. Wade covers the Massachusetts Statehouse for The Salem News. He can be reached at email@example.com Follow him on Twitter: @cmwade1969