Individuals convinced that insurers are denying adequate coverage for Lyme disease faced off against business groups seeking to keep health care costs down, with concerns about lawmakers mandating treatment contrary to what experts recommend.
Those who have suffered from Lyme disease said they encountered resistance or a lack of understanding from physicians before receiving a diagnosis and treatment.
“You can’t get treatment in Massachusetts very easily,” said Bonnie Johnson of Boylston, who said her daughter had heart palpitations and problems with her legs as early as the age of 9, and suffered from “brain fog” associated with the tick-borne illness. It wasn’t until Johnson’s daughter was 18 that a doctor connected the symptoms to Lyme disease, said Johnson.
Eric Linzer, senior vice president of public affairs and operations at the Massachusetts Association of Health Plans, said insurers “typically” cover Lyme disease, but he said the Centers for Disease Control and Prevention and the American College of Rheumatology recommend up to 28 days of antibiotic intravenous therapy, and have found treatment beyond that is no more effective and can create “longtime health complications.”
“There’s definitely questions about the efficacy of this type of treatment. What concerns us is you’re putting into statute requirements that may conflict with appropriate medical treatment or ultimately could be harmful for consumers,” Linzer told the News Service.
Bills (H 901/S 502) filed by Rep. David Linsky and Sen. Anne Gobi count a majority of members of the 200-seat Legislature as co-sponsors, and the legislation would mandate coverage of “long-term antibiotic therapy of Lyme disease” when deemed medically necessary.
The bills, which were the subject of testimony Tuesday before the Joint Committee on Financial Services, specify that long-term antibiotic treatment “shall not be denied solely because such treatment may be characterized as unproven, experimental, or investigational in nature.”
Linsky’s bill has 124 sponsors from the House and Senate spanning the ideological spectrum, including Sen. Jamie Eldridge, the Senate chairman of Financial Services.
Dr. Katherine Lantsman, who has both treated and experienced Lyme disease, said the 28-day treatment is sometimes not enough, and said that sometimes even shorter coverage is denied.
“You can be sick with anything else. They’ll pay for it,” said Lantsman.
Proponents and opponents of the mandate agreed that the medical community is not unified in its approach to Lyme disease treatment.
“There’s a lot of controversy in the treatment of Lyme disease,” Lantsman told the News Service. She said there are “two schools of thought” about the measures needed to treat it, and she said research shows the “persistence” of the disease.
Merillyn Chicknavorian said she contracted Lyme disease while showing a property in Westminster, but when she went to an emergency room a doctor told her the pain she felt was “psychosomatic.”
“I wish I never had this, but I know the truth,” Chicknavorian said. She said, “People are dying of this. They’re suffering unnecessarily.”
Her voice choked with emotion, Christine Lorentzen told the committee she had been misdiagnosed for years and spent tens of thousands of dollars out of pocket as Lyme disease took a toll on several aspects of her life.
“It has severely affected my ability to think and to function,” Lorentzen said.
Jon Hurst, president of the Retailers Association of Massachusetts, testified against insurance mandates in general, noting that the larger self-insured organizations are not subject to the state’s mandates, meaning small businesses have a larger burden for insurance.
Members of the Financial Services Committee were greeted with applause as they challenged Hurst and National Federation of Independent Businesses Massachusetts state director Bill Vernon on the benefits of broader coverage.
“You don’t know what you’re going to get sick from,” said Rep. Aaron Michlewitz, the House chairman of the committee.
A resident of Beverly, Hurst said he and one of his sons have both contracted Lyme disease, and said it could be an enticing option for insurance coverage.
“Maybe if you lived in an area where it is very prevalent, that would be a nice option to be able to buy that coverage,” said Hurst, who said he doesn’t want people to “be forced to pay for it.”
“At one point I was thinking the way you’re thinking,” said Rep. Don Wong, a Saugus Republican, who noted that dogs from one area could go to another area and “ticks could be on them too.”
“We shouldn’t be leaving anyone behind,” said Rep. Tim Madden, a Nantucket Democrat and Vineyard representative, who said some employers want insurance mandates.