An open letter to the Boston Globe
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the National Guidelines Clearinghouse (NGC) compendium of recommended treatment guidelines as they were found to be outdated and non-compliant.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.
- March 29, 2016 at 5:54 pm
That is exactly what I was going to say. Michelle, thank you for such an incredible response.
- March 29, 2016 at 6:15 pm
BRAVO and well said. The Globe should be ashamed of itself for taking sides on an issue they obviously know NOTHING about!
- March 29, 2016 at 6:39 pm
Michelle, incredible response. My response is a bit shorter. You stupid idiots. Don’t you realize we have a Mafia criminal establishment medicine institution. I have lost any semblance of patience with them. They won’t treat me or anybody, so why be quite. Call them out for what they are, whenever you can.
- March 29, 2016 at 6:41 pm
Thank you for writing this, you are absolutely right on all points. Shame on the Globe for running such a terrible piece.
- March 29, 2016 at 6:52 pm
Well said! Legislators must be urged to pass this important bill.
- March 29, 2016 at 8:43 pm
Very well stated. Thank you.
- March 29, 2016 at 8:52 pm
What about the rest of the country?
- March 30, 2016 at 1:33 am
Agree. I’m totally for the MA bill and others like it in other states, but federal legislation would be best. There should be a federal law mandating insurance coverage of Lyme treatment and protection for LLMDs to practice. I don’t see this being passed anytime soon, so states have to act on their own.
Since most change starts at the state level and the feds eventually come along dragging their feet, there might be a bill like that passed someday, if the IDSA doesn’t change their guidelines first. How many lives have to ruined before that happens?
Good article, Michelle. You did a great job explaining why the bill should be passed.
- March 29, 2016 at 9:49 pm
you are an effective writer; outstanding job of telling it like it is! best wishes to mass. to get this passed!
- March 30, 2016 at 2:51 am
Thank you. It’s all about money. The globe was paid to take the insurance industry side. We will not be manipulated any longer. It’s similar to the cigarette industry. They know they end is near for their arrogant treatment of dying children. I hope a movie is made of the illegal denial of treatment. Medical insurance is paid for, yet nothing is given as promised.
- March 30, 2016 at 4:07 am
Thank you. Thank you for your intelligent response and clearly stating the facts. Thank you for speaking for those who can’t. Thank you for your honesty. We must find a cure. Enough is enough.
- April 4, 2016 at 12:48 pm
Well researched, well written and very well presented. Your timely and factual response is greatly appreciated. Tick season is already underway and early counts are much higher than last year which means higher risk for tick borne illnesses. Massachusetts residents need and deserve full access to health care. The time for this bill to be passed. Thank you for speaking up and advocating for action.
- June 14, 2016 at 7:18 pm
Boston Globe- Another instance of unbalanced reporting. How many with Lyme did you visit to learn about their struggles and pain? Opinions for sale everywhere. Meanwhile, people die. Thank you for this well written rebuttal. Those of us who are weak are so grateful for your strong voice.
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