The Boston Globe newspaper this week ran an editorial opposing legislation to require insurance companies to pay for long-term treatment of Lyme disease. A Massachusetts Lyme advocate responds.

by Michelle Treseler

Massachusetts is at the epicenter of Lyme disease, an infectious disease that is estimated to be six times more common than HIV/AIDS. The Boston Globe’s misleading editorial regarding pending Lyme disease legislation on Beacon Hill reflects a fundamental failure to understand the science and politics of Lyme disease and suggests an astonishing degree of hypocrisy in how the Boston Globe discusses healthcare costs and proposed mandates.

Anyone who has followed scientific and political developments regarding Lyme disease in the past decade should have a basic familiarity with the debate. On the one hand, the International Lyme and Associated Diseases Society (ILADS) recommends antibiotics when appropriate, based on the treating physician’s clinical judgment. On the other, there is the Infectious Diseases Society of America (IDSA), which recommends a short course of antibiotic treatment for Lyme.

The IDSA guidelines, which the Globe endorsed, were removed from the National Guidelines Clearinghouse (NGC) compendium of recommended treatment guidelines as they were found to be outdated and non-compliant. Despite being pulled from the NGC, the IDSA guidelines are still being used by some insurance providers to justify denial of care. The IDSA was also investigated several years ago by Connecticut Attorney General (and now Senator) Richard Blumenthal for immense conflicts of interest that existed between the IDSA and the insurance industry.

By wading into this debate and suggesting that the scientific community is wholly aligned with the IDSA — which is not the case — the Globe has done its readers, Massachusetts, and itself a disservice. Lyme patients cannot — and should never be asked to — accept substandard care based on faulty insurance guidelines.

Now is not the time to stick our heads in the sand and pretend that chronic Lyme disease does not exist or that all cases are cured within an arbitrary time-frame of antibiotic treatment. The state of science on Lyme disease is evolving and physicians on the front lines are drawing upon the latest research and using their best clinical judgement to provide care.

There has never been a study demonstrating that 30 days of treatment cures chronic Lyme disease. There is, however, a large amount of documentation which shows that short courses of antibiotic treatment fail to eradicate the causative agent of Lyme disease. According to ILADS, short treatment courses have resulted in upwards of a 40 percent relapse rate.

Recent scientific studies have shown that ILADS is right to advocate patient-specific care. Numerous studies show the persistence of Borrelia burgdorferi bacteria after short courses of antibiotics, and there are now hundreds of patients who have recovered following individualized long-term treatment (as opposed to a short-course-and-done approach favored by IDSA).

Dr. Robert Bransfield recently compiled a list of 700 peer-reviewed articles on the persistence of Lyme and other tick-borne diseases. This mountain of convincing clinical data suggests that Lyme disease persistence occurs because the Lyme spirochete is able to evade both the host immune response and short-course antibiotic therapy to establish chronic infection in protected tissue sites. The chronic infection leads to persistent musculoskeletal, neurological and cardiac manifestations that are the hallmark of chronic Lyme disease. There is still no compelling evidence for the alternative theory that persistent symptoms are due to an autoimmune response triggered by the earlier infection. Given the current science, it follows that persistent infections appear to be the cause of chronic Lyme disease and, as such, long-term antibiotic therapy would be helpful in this situation.

Beyond being wrong on the science, the Lyme disease editorial highlights an odd shift in how the Globe discusses insurance-related issues. Just last Friday, the Globe endorsed a health insurance mandate on Beacon Hill (and one that costs, per patient, the same amount as the proposed Lyme mandate) requiring coverage for lipodystrophy treatment, which may alleviate the pain and psychological suffering of AIDS patients. Unlike lipodystrophy, but much like AIDS, Lyme disease kills.

And just last summer, in “Out-of-pocket costs put health care out of reach,” the Globe’s Mark Pothier bemoaned the exorbitant out-of-pocket costs his insurer forced him to pay for a minor surgery. Pothier writes about his own health insurance experience, saying: “Many are being squeezed into choosing between two bad outcomes: taking on debt or forgoing treatment.”

This awful choice is exactly what Lyme disease patients face today as insurers pass the buck to patients and society. And it appears that the Globe has forgotten that out-of-pocket costs can empty pocketbooks, bankrupt families, and destroy small businesses. In the current insurance landscape in Massachusetts, many Lyme patients are left footing the bill for treatments that are often necessary for survival.

Too often, insurance providers, not doctors, are deciding Lyme disease medical treatment. Delayed or inadequate treatment leads to significant cost for the Commonwealth: studies show that Lyme disease, in addition to the cost of treatment, increases social costs due to lost economic output, productivity loss, and disability. The cost of Lyme disease is a recurring cost until people are adequately treated.

The legislation pending on Beacon Hill protects patients and allows them to access their physician-prescribed medical care, while costing next to nothing: according to the 2014 Center for Health and Information Analysis report, requiring coverage for this benefit by fully-insured health plans would result in an average annual increase, over five years, to the typical member’s monthly health insurance premiums of between a negligible amount (0.00%) and $0.13 (0.02%) per year. Given that there will be little to no impact on insurance policyholders premiums, that the Governor’s Lyme Commission Report recommends mandatory Lyme disease insurance coverage, and that 70 percent of the legislature are co-sponsors of the bill, Massachusetts has done its research and is ready to pass this bill.

A similar Lyme disease bill was enacted in Rhode Island over a decade ago and, despite insurers’ dire predictions, the sky did not fall, small businesses were actually helped not hindered, and the most discernible outcome is that sick people were able to access their physician-prescribed medications. People got well.

Until the Lyme disease legislation is passed, there is nothing to stop insurers from denying insurance coverage for Lyme disease treatment in Massachusetts. Denial of coverage is denial of care. We are better than that. We care about our neighbors, our sons, our daughters, our mothers, and our fathers. Insurers are passing the costs onto citizens, employers, and the Massachusetts economy. The Globe’s editorial wrongly supports denials of insurance coverage and misrepresents the science surrounding Lyme disease. Enough is enough. The people of Massachusetts expect and deserve better.

Michelle Treseler co-founded the MA Lyme Coalition.