Most people diagnosed with Lyme disease feel better after a few weeks on antibiotics. But a minority of patients infected by the tick-borne bacteria suffer years of debilitating sickness. Their symptoms include headaches, fatigue, severe joint and muscle pain, heart problems, and central nervous system issues. Some can barely function. The only relief, they say, comes from ongoing treatment with large doses of antibiotics, which can cost thousands of dollars a month.
No one doubts that these patients are ill — but with what, exactly? The federal government’s Centers for Disease Control and Prevention doesn’t recognize so-called chronic Lyme disease, since the bacteria itself is killed off rather quickly by antibiotics. According to the CDC, medical specialists believe the persistent ailments are likely caused by “residual damage to tissues and the immune system that occurred during the infection.”
And that’s the problem with legislation under review on Beacon Hill that would require insurers in Massachusetts to cover Lyme disease treatments for as long as a doctor says they’re needed — the proposed mandate isn’t backed up by existing science. Lawmakers may have good intentions, but they don’t possess the expertise to decide whether it’s beneficial, cost-efficient, or safe, to keep using strong medicines to treat a condition the medical establishment doubts is real. Such questions should be resolved by a consensus of doctors and researchers — and buttressed by convincing clinical date — not determined by legislative mandate.
Advocates for the proposal argue that the disease has reached epidemic proportions in Massachusetts and that antibiotics often are the only recourse for desperate patients. They seek out “Lyme-literate” doctors who break with conventional thinking on the illness. “This bill is really only about allowing people access to treatment when it’s prescribed,” says Trish McCleary, co-founder of the Massachusetts Lyme Coalition. A law, says McCleary, “is the logical next step to address the issue.” But not when that law calls for improved access to unproven, and perhaps risky, treatment methods. Prolonged use of antibiotics like amoxicillin and tetracycline diminish the drugs’ effectiveness over time, and could mask the actual underlying causes of patients’ symptoms, including cancer.
Passage of the bill might encourage other patient-advocacy groups to push for insurance-treatment mandates that aren’t based on proven medicine, something that Eric Linzer, a spokesman for the Massachusetts Association of Health Plans, says would “set a dangerous precedent.” The trade group Associated Industries of Massachusetts holds a similar position.
Increased Lyme disease treatments also could increase health care spending in Massachusetts at a time insurers and providers are trying to get it under control. State Representative David Paul Linsky, sponsor of the legislation, cites a 2014 state Center for Health Information and Analysis review that found expanded coverage for Lyme disease would add no more than 13 cents to a typical insurance premium. Cumulatively, however, mandates add up. And because large, self-insured employers are exempt from the Lyme disease provision, the burden would unfairly be placed on smaller businesses, which already are grappling with the high price of health insurance for employees.
Patients whose lives up been upended by Lyme disease need more answers, but they should come out of a medical lab, not a legislature.