Today, the Boston Globe editorial board spoke out against a bill "that would require insurers in Massachusetts to cover Lyme disease treatments for as long as a doctor says they're needed." The Globe writes:
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 [sic] -- not determined by legislative mandate.
Who among the Boston Globe editorial board possesses the medical expertise to make this call is not disclosed, but this information would be useful given that the Globe's stance presumes absolute authority on the matter of treating Lyme disease -- siding with the Centers for Disease Control and Prevention on the controversial matter of diagnosing and treating persistent Lyme and associated diseases, and ignoring an abundant and growing body of contradictory research.
The Globe states that, "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.'" Some medical specialists believe this, based on evidence. Other recent evidence demonstrates that certain strains of the Lyme-causing Borrelia burgdorferi bacteria create what are known as "persister" forms -- bacteria that survive antibiotic treatment when a patient is thought by conventional doctors to be "cured," and then reproduce to cause ongoing and progressive illness. A study published last August in the peer-reviewed journal Antimicrobial Agents and Chemotherapy showed that persister strains of B. burgdorferi were immune to conventionally administered antibiotics in a laboratory setting, but died when the antibiotics were administered in a less conventional pulsed method. Another study, published in the European Journal of Microbiology & Immunology last November, describes the potential usefulness of the popular natural sweetener stevia in treating persister strains of Lyme bacteria. Studies assessing persister bacteria abound in the literature -- but the Boston Globe would lead every reader to believe that anyone who continues to suffer from Lyme disease symptoms following a conventional 28-day application of doxycycline is suffering only from "residual damage to tissues and the immune system that occurred during the infection." It calls physicians who do the best to treat their patients responsibly based on solid research reckless, while recklessly taking a side on a serious epidemic that affects, conservatively, more than 300,000 more Americans every year.
The Globe's editorial board implies without exception that the CDC is the absolute authority on appropriate and correct treatment for Lyme disease; yet Lyme doctors and patients alike have continually challenged the CDC's stance on Lyme treatment. The Globe states that, "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." Yet countless people -- including me -- have desperately sought out specialists of all kinds and are tested for veritably anything and everything from multiple sclerosis and ALS to lupus, HIV, rheumatoid arthritis and -- yes -- cancer, before finally being diagnosed with Lyme disease due to woefully inaccurate tests that are supported by the CDC despite abundant evidence that the tests are unreliable. No one cares if a patient's underlying Lyme disease goes undiagnosed for a decade or two, but we can't stand for this to happen with cancer. Why?
The CDC is a regulatory agency; the National Institutes of Health conduct and commission most of the nation's (and much of the world's) health research -- yet the CDC is constantly cited as the authority based on its regulations. The Globe states that. "Patients whose lives up been upended by Lyme disease need more answers, but they should come out a medical lab, not a legislature." And yet the Globe's editorial board evidently invested exactly zero effort in reviewing scientific literature, instead opting to take the CDC's increasingly controversial stance on Lyme disease diagnosis and treatment in the face of conflicting science. As a reminder, the CDC is not a divinely ordained infallible agency: The celebrated novel and film And the Band Played On documents the CDC's politically motivated lethargic response to the HIV/AIDS crisis of the 1980s, and the Center itself administered the infamous Tuskegee experiments, which documented the degradation and deaths of unwitting black men from syphilis from 1932 through 1972. This is not to suggest that the CDC continues to take intentional stances at great cost to public health -- but a reminder that it has in the past and that any standpoint as strong as that which the Boston Globe has taken should be grounded in science and take documented history into consideration, and not base its argument on a single federal agency's assumed righteousness.
The crux of the Globe's concern seems to be financial -- the cost to medical insurers and to employers to treat late-stage or persistent cases of Lyme disease with antibiotics, when prescribed by knowledgeable and competent physicians based on sound medical research. Here, the Globe is taking a decidedly shortsighted and ironically unglobal view of public health; Lyme and associated tickborne infections are undeniably costly in many ways, including emergency room visits, disability claims, and lost productivity because it can become a severe, life-affecting, sometimes disabling and occasionally deadly disease. As with HIV and AIDS, or even syphilis, most people's denial of Lyme disease tends to slowly melt away when a loved one contracts it and can't get the help he or she needs. This is the human cost of Lyme disease -- the cost that matters, it seems, only to those who are directly affected. It will in time, as this disease is spreading rapidly throughout our country and across the globe. In the meantime, those of us who have been affected don't expect an overnight change in attitude (as much as it is needed), but we do expect journalists and newspapers of record to take informed stances when they assert opinions, and not to use a truly limited and biased source as their only basis when making grandiose statements that influence their readers.