Recently, Massachusetts Governor Charlie Baker made a major revision to a bill that would have supported insurance coverage for patients whose Lyme disease symptoms persist or become worse despite short-term antibiotic treatment. As reported by the Boston Globe, “Baker has until midnight Thursday [7/28/2016] to sign or veto the legislation or to let it become law without his signature.”
In Baker’s revision to the proposed legislation, extended antibiotic treatment would be covered–but only when prescribed by rheumatologists, neurologists or infectious disease doctors. If passed, the law, therefore, would disallow antibiotic therapy to be prescribed by physicians most likely to treat patients who suffer from persistent Lyme disease–tickborne disease specialists who belong to the International Lyme and Associated Diseases Society (ILADS). Neurologists and rheumatologists who suspect Lyme or another infectious disease are most likely to refer their patients back to their general practitioners for a referral to a Lyme or an infectious disease specialist.
Because of the prevalence and severity of Lyme disease in Massachusetts, the state legislature is considering a veto to Baker’s spurious change.
I reached out to Baker’s office via email and was told that the governor was not available for comment; however, a spokesperson replied that “Governor Baker supports comprehensive coverage and access to Lyme Disease treatment. While the administration acknowledges that long-term antibiotic therapy is not clinically recognized as an appropriate form of treatment at this time, we look forward to maintaining an open dialogue on this issue with the Legislature, medical community and advocates to ensure we are implementing the best policies to keep Massachusetts patients safe.”
Objectively, the claim that “long-term antibiotic therapy is not clinically recognized as an appropriate form of treatment at this time” is false.
While this is the position of the Infectious Diseases Society of America (IDSA), whose treatment guidelines are supported–to great controversy–by the U.S. Centers for Disease Control and Prevention (CDC), ILADS, the professional medical association dedicated to Lyme disease, advocates treating Lyme on a patient-by-patient basis, including prolonged antibiotic treatment therapy. Dr. Daniel Cameron, lead author of the ILADS treatment guidelines published in 2014, writes:
If the initial course of antibiotic retreatment does not produce a complete response, clinicians should consider various options. Patients who had an incomplete response with one agent may be responsive to another; thus, switching agents may prove successful. Alternatively, combination therapy may be appropriate in select patients. Examples include those with known or suspected co-infections and patients who had incomplete responses to single agent therapy.
Major differences of opinion represented in the IDSA and ILADS treatment guidelines are the source of much controversy and dispute among doctors and patients alike. Many patients have partially to fully disabling illnesses prior to antibiotic treatment and regain wellness after prolonged treatment. While the IDSA claims that there is no evidence to support persisting/chronic Lyme disease, as of 2015, over 700 peer-reviewed medical journal articles observed and discussed Lyme disease persisting following standard short-term treatment with doxycycline. The IDSA rejects this body of research, which continues to grow, while ILADS accepts it and considers it evidence for Lyme disease bacteria persisting within the human body.
The problem with Baker’s legislative preference is that it is hypocritical in two obvious ways:
First, according to the given statement, Baker has been persuaded to believe that prolonged antibiotic treatment does not work–yet his law would give three medical specialists the freedom to prescribe long-term antibiotics to Lyme patients: rheumatologists, neurologists, and infectious disease specialists. Why, if the change was made on the basis of prolonged antibiotic therapy being ineffective, would he allow all these specialists but not Lyme disease specialists to prescribe longer-term antibiotics? This hypocrisy reveals a clear bias toward the IDSA opinion and against the opinion of ILADS, which represents exclusively medical doctors who treat Lyme and other tickborne diseases.
Second, most infectious disease specialists adhere to IDSA treatment guidelines and so most would not readily administer longer-term antibiotics–and so the governor’s decision to leave such a decision to an infectious disease specialist appears to undo itself. This provision is akin to prohibiting drinking alcohol except to those who have sworn never to have had a drink of it.
I asked whether Baker had considered any dissenting opinions. His spokesperson wrote that “Several provider and physician organizations wrote in on this and reiterated that this is not a universally recognized form of treatment – see attached, thanks – have a nice weekend.” He attached letters from the following:
- Atrius Health
- Massachusetts Infectious Diseases Society (MIDS)
- Massachusetts healthcare providers
- UMass Memorial Children’s Medical Center
- UMass Memorial Children’s Medical Center (2)
A Boston Globe article published this morning revealed that Baker is a former health insurance executive, having served as the CEO of Harvard Vanguard Medical Associates. Now known as Harvard Pilgrim Health Care, this insurance company is one of several that make up Atrius Health Medical Practices. When I asked Baker’s spokesperson why he chose to strike proposed mandatory health insurance coverage for Lyme disease treatment by Lyme specialists, his spokesperson provided the documents linked above. One of these is a letter from Atrius Health.
Some of the reasons cited in these letters for not prescribing longer-term antibiotics for Lyme include placing patients at risk for “allergic reactions, bloodstream infections as a complication of indwelling intravenous catheter, disruption of normal microbiota, and development of antibiotic-induced diarrhea.” The antibiotic-related risks apply, as well, to any prolonged antibiotic treatments, such as those commonly prescribed by dermatologists for acne and by urologists for long-term uninary tract infections.
The MIDS also states a concern about the overprescription of antibiotics creating antibiotic-resistant “superbugs,” which is a viable public health concern. However, this concern is stated almost exclusively in the context of Lyme disease, and used as an argument against treating Lyme. The doctors and public health officials who cite is rarely, if ever, discuss longer-term antibiotic treatments of acne, bladder infections, tuberculosis, etc. Why?
I spoke a few weeks ago with an antibiotics expert from the CDC, and she explained that even if all human beings were to cease being treated with antibiotics, we should still expect a rapid and pronounced rise in “superbugs” because of animal farming practices in which cattle, chickens and other livestock are fed copious amounts of many different antibiotics–often every day of their lives–to prevent infection due to greatly overcrowded living conditions and especially to accelerate muscle growth. It is strange that Lyme disease treatment is cited by the IDSA as a primary contributor to the rise of superbugs, while federal public health authorities have little care and no power to address super-dosing of food animals with a variety of antibiotics, as oversight for this is assigned exclusively to the FDA. The FDA has made some headway, but is this not a human public health concern, as it poses a far greater risk of promoting antibiotic-resistant bacteria? The answer seems to be no: Lyme disease treatment, for reasons unexplained, is consistently identified as the primary concern. Why?
Lyme disease is caused by Borrelia burgdorferi, a syphilis-like spirochete type bacterium. While probably–hopefully–unrelated, it is a truly peculiar coincidence that today, in 2016, the CDC and its favored Infectious Diseases Society of America prohibit antibiotic treatment of Lyme disease even when patients frequently recover significantly from their Lyme symptoms as a result of antibiotic treatment.
From 1932 until 1972, the federal Public Health Service, the precursor to today’s CDC, conscripted a great number of medical doctors to willfully abandon their Hippocratic oath to “do no harm” and surreptitiously monitor the declining health–in many cases to the point of death–of black men who had syphilis. These men were not told by their doctors that they had syphilis. They could have been cured by a simple penicillin shot but instead were used as human laboratory animals who suffered and/or died as a direct result of medical doctors and the Public Health Service’s inhumane and grossly unethical protocols.
Today, the CDC asks doctors to refuse to treat Lyme disease patients for longer than 28 days even when the treatment returns their health and wellness. The doctors who refuse to let their patients suffer needlessly are persecuted. The coincidence of Lyme’s relationship to syphilis and the prohibition of treatment is disturbing.
To this day, the CDC website includes a disturbingly cold timeline of the Tuskegee experiment, asking “What Went Wrong?” (See above screen capture from the CDC.gov website.)
The answer it gives: “an Associated Press story caused a public outcry.”
The correct answer is that the study was, to be blunt, evil, and it never should have happened. That is not a perspective shared by the CDC according to material on its website.
The IV catheter risks cited in the MIDS letter apply to many patients: a 2013 article in The Neurohospitalist stated that this practice “has become very common,” with “about 150 intravastular devices” used every year within the United States, and by no measure is the risk associated with treating Lyme disease this way greater than it is to treat any other illness.
In cases of every illness other than Lyme disease, the risks are never used to deny access to treatment for those patients; however–only to Lyme disease patients. Such risks typically would be weighed against benefits of treatment and severity of illness: in a 2014 survey of chronic Lyme disease patients, LymeDisease.org reported that chronic Lyme patients report worse health and a lower quality of life than people who have multiple sclerosis, systemic lupus, heart attack and even congestive heart failure. Yet the IDSA and its members regard the risks of treating Lyme disease for longer than 28 days with doxycycline not to be worth patient risk; whereas, this is done commonly for acne, generally a disease that causes only cosmetic damage. Author Amy Tan wrote in the New York Times in 2013 that “I have my life back but I am not cured. If I go off antibiotics, the symptoms march back.”
This has been my experience to date, as well, and that of countless people who have been diagnosed with Lyme disease–yet authorities such as Governor Baker for specious reasons have determined that 1) those who treat infectious diseases but argue against treating Lyme disease know better than patients and than those who exclusively treat Lyme disease; 2) that those who treat Lyme disease exclusively–board-certified medical doctors–all are wrong when the members of a competing medical association all are correct; 3) all peer-reviewed, published research numbering over 700 articles should be discarded because the preferred medical organization rejects it for unspecified reasons; and 4) that those who experience Lyme disease themselves do not know their bodies as well as IDSA member doctors do, and that in every case remission of symptoms while prescribed antibiotics is an imagined phenomenon.
Baker’s spokesperson also emailed two documents supporting his decision: A March 29, 2016 Boston Globe editorial petitioning legislature to reject the treatment mandate, which was coincidentally published two days prior to a paper published in the New England Journal of Medicine, which was the basis for a Forbes article proclaiming that “Long Term Antibiotic Use for Lyme Disease Doesn’t Work, Study Says.” Never mind that the study reached no such sweeping conclusion. Never mind science.
I asked Baker’s office on what grounds the Boston Globe editorial board was able to use its significant influence to make recommendations for treating an infectious disease. (Importantly, since its editorial, the Boston Globe has published a dissenting opinion from a Jim Cantwell, a state representative, who says that insurance should be required to cover Lyme disease. As is often the case with public officials and authorities supporting Lyme disease treatment and research, Cantwell himself contracted Lyme disease and thus understands the severity and sobering reality of the illness. Further, the Globe polled its readers and at this time 92 percent voted “yes” to whether insurance should be required to cover Lyme disease.)
I pointed out, which I have done before, that the NEJM article was limited to treating Lyme patients with two select antibiotics for an arbitrarily determined three-month term; its conclusions, therefore, are limited and do not account for other antibiotics not tested, for other drug combinations, for newer modes of antibiotic administration such as pulsed dosing, or for terms longer than three months. In fact, many Lyme patients experience no improvement in symptoms for six months or longer–which was my personal experience.
I asked whether Governor Baker had considered these points, or letters submitted by Lyme disease specialists, support organizations or patients in his decision.
I also asked by Governor Baker had determined that the IDSA approach to treatment is superior to the ILADS perspective, especially when the IDSA guidelines were removed from the federal Institute of Medicine’s National Guidelines Clearinghouse earlier this year because they were determined to be outdated and in need of review against scientific findings from within the past decade. (Consider how many medical and scientific discoveries are made over such a span of time. In the case of Lyme disease, they have been extraordinarily insightful.) The ILADS guidelines have been accepted into the National Guidelines Clearinghouse and are provided by the IOM as a resource for physicians who treat Lyme disease. In short, this branch of the Department of Health and Human Services has determined that doctors should use the ILADS guidelines and not the IDSA guidelines at this time.
I also pointed out that several weeks ago, an infectious diseases specialist convened a “Lyme hackathon” to fill in research gaps that the federal government has failed to address, and that this event was supported by MIT, Harvard University Medical School and the Department of Veterans Affairs. The specialist told me that infectious disease doctors are “data dumb” and are not addressing Lyme disease adequately.
To date, I have received no reply to any of these questions.