People fear Lyme disease for good reason. It still isn’t well understood, even as it advances across the Northeast. It debilitates its victims, some of whom feel sick for months or years after the tick-borne infection is fought with antibiotics.
If not treated, Borrelia burgdorferi does fearsome danger to the bodies and minds of sufferers.
As the incidence of Lyme spreads, people are rightly demanding that their public institutions shape tools to combat it. One such tool is language in the newly passed Massachusetts House budget that requires insurers to cover long-term antibiotic treatment against Lyme.
That sounds like a good idea, and it may indeed help people with Lyme. But as sometimes occurs with legislation, the budget amendment to mandate extended antibiotic therapy is driven more by emotion than medical science. When that happens, the caution flag ought to wave.
People have been arguing over how to treat Lyme for years, long enough for a divisive debate, and distrust of the medical establishment, to take hold. Evidence of that sits right in the language of state Rep. David Linsky’s amendment, which still needs Senate approval and the governor’s signature. The passage compelling insurers to provide extended antibiotic treatment notes they cannot deny coverage “solely because such treatment may be characterized as unproven, experimental, or investigational in nature.”
That’s not quite how the federal Centers for Disease Control and Prevention describes this, but it’s close. “Studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo,” the agency says on its website. “Furthermore, long-term antibiotic treatment for Lyme disease has been associated with serious complications.” Links to information on the nature of those studies, and the types of complications documented, are available at www.cdc.gov/lyme/postlds.
That page explains why the CDC prefers the term Post-Treatment Lyme Disease Syndrome to the popular shorthand, chronic Lyme. “The good news,” the CDC says, “is that patients with PTLDS almost always get better with time; the bad news is that it can take months to feel completely well.”
That grim outlook faces a “small percentage” of those fighting Lyme and can last six months or more, due to damage done in the course of infection to tissues and the immune system. The CDC recommends people who feel sick for this long speak with their doctors. “Your doctor may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome.”
The amendment puts lawmakers in the odd position of deciding what’s best for sick people. Doctors don’t like that. They didn’t when lawmakers this year decided to tell them how many prescription opioids they could supply in an initial prescription. In the end, a compromise was reached.
Linsky, a Natick Democrat, is acting on valid concerns. Insurers, to be honest, are in the business of denying coverage. And among doctors, the debate over Lyme has led some to underplay the threat this disease poses, and how hard it is to fight within the body.
The amendment doesn’t tell doctors what to prescribe. Rather, it would make prescriptions affordable to people with insurance – though not all of them. As critics of the measure note, state legislation doesn’t apply to larger companies that self-insure and are regulated nationally.
All that said, the emotion behind Linsky’s measure is evident in the way the lawmaker talks about it, calling it “an important first step in helping to give access to treatment for the thousands who suffer in Massachusetts every year.” That’s not accurate. Physicians are routinely supplying those first steps, and insurers are covering them.
Fear of Lyme is finally helping this scourge win needed attention on Beacon Hill. People have a right to pursue therapeutic approaches they like. But laws related to disease should be based on solid clinical evidence. The facts aren’t all in.
The bottom line is that patients fighting Lyme need to find doctors who understand this disease and are current on the best ways to beat it.