The Legislature is considering an override of Gov. Charlie Baker’s stripping from the budget a provision mandating long-term antibiotic treatment of Lyme disease.
In an amendment to the current budget, Baker substituted an amendment that would instead limit access to treatment and force people to incur higher costs associated with visiting specialists.
The tick-borne illness, which can cause everything from aches to neurological problems takes a major toll on the Bay State, infecting thousands each year, according to the Department of Public Health.
In its annual budget, the Legislature sought to smooth access to Lyme disease treatment, passing a mandate for public and private insurance coverage of long-term antibiotic treatment — a therapeutic method favored by some and opposed by others in the medical field.
Baker, citing concerns raised by some in the insurance and health industries, called instead for scrapping language mandating coverage of off-label uses of drugs and limiting the mandate to long-term antibiotic treatment ordered by rheumatologists, infectious disease specialists or neurologists.
“While I support comprehensive coverage and access to Lyme Disease treatment, longterm antibiotic therapy is not clinically recognized as an appropriate form of treatment,” Baker said in a proposed amendment to the budget rider. “Further, requiring coverage of experimental drugs for offlabel use sets a concerning precedent.”
Baker’s amendment also puts off implementation of the mandate to January 2017. The mandate would sunset July 2021, under the budget language.
“We’re going to try to tackle this,” said Rep. William “Smitty Pignatelli, D-Lenox. “We all worked extremely hard on this for several years. It’s a very debilitating disease, and there was broad-based, bipartisan support. The jury is still out on how to treat it and what’s the right avenue. But people need treatment, and it has to be affordable.”
He said that during the debate on the measure sponsored by Rep. David Linsky, D-Natik, legislators heard from people who traveled out of the country for extended antibiotic treatment because they couldn’t afford an estimated $50,000 to $60,000 for long-term treatment in this country.
Pignatelli, calling the governor’s action “shortsighted, said “I hope we override it.”
Rep. Stephen Kulik, D-Worthington, also citing “very strong support” in the Legislature, said it’s evaluating which vetoes to override.
But he added, “The complicating factor is there isn’t unanimity in the medical community on whether it’s chronic Lyme disease and whether extended antibiotic treatment brings on other problems.”
Kulik said, “I’m hopeful we would override this.”
The 2015 report on Climate Change by the Massachusetts Senate concluded that insect-borne illnesses including Lyme disease “will become more prevalent and cause more individuals to be hospitalized” in the near future, and the state has one of the highest incidents, said a coalition of engineering and land surveyors’ societies supporting the Legislature’s measure.
But the Massachusetts Infectious Disease Society, representing more than 500 infectious disease specialists, advised legislators that long-term antibiotic treatment can be dangerous and potentially fatal while also possibly leading to “superbugs” immune to current treatments.
The tick-borne illness causes fever, fatigue and a rash, and if left untreated it can affect the nervous system, according to the Centers for Disease Control and Prevention.
“I have profound empathy for patients who are ill and have been told their illness is due to ‘chronic’ Lyme disease,” wrote Dr. Daniel McQuillen, president of the society. “I do not doubt that these individuals are suffering, but many report non-specific symptoms that could be attributable to a number of medical conditions … While there are clearly patients with Lyme infection who have chronic, vexing symptoms after antibiotics have eradicated the causative bacteria we do not yet know the cause.”
The health insurance and small business community also opposed the Lyme disease provision and other legislative attempts to mandate coverage, arguing that state-imposed mandates tip the scales toward big corporations. Large organizations that can self-insure under federal rules are not subject to state mandates.
An assistant professor at Tufts University School of Medicine and doctor specializing in infectious disease at Lahey Clinic, McQuillen cast a dim light on the entire notion of chronic Lyme disease and suggested public perception of the disease “may lead to overtesting and overdiagnosis.”
Some patients stricken with Lyme disease may continue to experience fever, chills, and memory loss “even after a course of antibiotic therapy has killed the Lyme disease bacterium,” he wrote. “A small group of physicians have diagnosed such patients as having ‘chronic’ Lyme disease.”
McQuillen said about 20 clinical and scientific organizations agree with the Infectious Disease Society of America’s perspective that “long-term antibiotic treatment is unwarranted for Lyme disease and potentially dangerous.”