How can you tell whether a doctor has screwed up? You use other doctors as a measuring stick. That’s why our tort law defines medical malpractice as an act that “deviates from accepted norms of practice in the medical community.” Now the New York State Legislature wants to substitute its own judgment for that of medical scientists. If it succeeds, rogue doctors will be able to shill their non-evidence-based treatments without worrying about intervention.
In May and June, the two houses of the New York State Legislature unanimously passed a bill prohibiting the state’s Office of Professional Medical Conduct—the agency that disciplines doctors who put their patients in danger—from so much as investigating a claim of medical misconduct that is “based solely on treatment that is not universally accepted by the medical profession.” The bill’s wording is strange—after all, very few practices are “universally accepted” in medicine. And why would the state want to protect practitioners who use unaccepted treatments? Drill down into the text and you’ll see that this is yet another attempt to promote acceptance of chronic Lyme disease.
Lyme disease is a well-understood, uncontroversial disease. Some deer ticks carry a bacterium known as Borrelia burgdorferi. If one of those ticks bites you, the pathogen can infect your bloodstream. The resulting illness is characterized by a signature bull’s-eye skin rash and flulike symptoms. Lyme disease is real, it’s common where deer are prevalent, and it’s treatable with simple antibiotics. In people who are not treated promptly, the bacterial infection can linger and cause numbness, paralysis, and cognitive problems. Even late Lyme, however, can be diagnosed with a blood test and treated with antibiotics.
“Chronic” Lyme disease is an entirely different matter. A small number of doctors, and a much larger number of patients, think some cases of Lyme disease persist even after treatment. In the vast majority of these cases, there is no evidence that the patient was ever infected with B. burgdorferi in the first place; the condition is diagnosed by symptoms of fatigue or pain, which are associated with countless other ailments. The Infectious Diseases Society of America—the association of scientists and clinicians who study this sort of thing—has repeatedly characterized chronic Lyme disease as “not based on scientific fact.”
For people who believe in this supposed ailment, the favored treatment is long-term, usually intravenous antibiotic therapy—a treatment that is used for very few disorders. Taking intravenous antibiotics for many months can cause serious side effects and encourages the development of dangerous antibiotic-resistant bacteria.
Self-professed “Lyme-literate” doctors have been trying for well over a decade to prove that chronic Lyme exists and that long-term antibiotic treatment works. They have failed to convince the overwhelming majority of the medical community. Mainstream doctors warn patients against “Lyme-literate” physicians, some of whom have built lucrative practices entirely around the unproven disease and its long-term and often cash-only treatments.
There’s one inescapable reason why the chronic Lyme controversy won’t go away: Rich people care about it. One of the biggest “risk factors” for chronic Lyme disease is wealth. Indeed, some infectious disease specialists jokingly refer to chronic Lyme as a “disease of affluence.” That’s partly because diagnosed, medically substantiated Lyme disease is also a disease of affluence. Deer ticks are common in rich suburban areas, like those around New York City. Demographic information from medical studies shows that patients suffering from Lyme disease, as well as those who think they have chronic Lyme, earn far above the national average. Patients in a 2012 study of chronic Lyme had a mean income of nearly $140,000. In a 2014 chronic Lyme study, 28 percent of participants had household incomes above $100,000, which is nearly twice the U.S. median.
That may be why Columbia University, otherwise a bastion of real medical science, accepted a big pile of money to crank out yet more studies on a disease that has failed to declare itself in many prior studies. And it’s why New York state legislators, very few of whom know the first thing about evidence-based medicine, unanimously voted to insulate chronic Lyme quacks from investigation. The people who fund their campaigns demanded it. The Lyme Disease Association, an organization dedicated to chronic Lyme advocacy, has urged its army of followers to contact their representatives about the bill. The same goes for LymeDisease.org, another group dedicated to chronic Lyme acceptance.
The New York state bill is replete with the sort of language that chronic Lyme advocates have been pushing unsuccessfully for years. Here’s a line from the memo accompanying the bill: “[I]t is important that the [Office of Professional Medical Conduct] maintains a flexible, case-specific, investigations policy—particularly where new treatments and acceptance by the medical community do not align.”
The long-term antibiotic treatments offered for chronic Lyme cannot possibly be described as “new.” Mainstream doctors don’t reject the treatment because it’s unfamiliar or untested—they reject it because it’s been proved not to work. Doctors who continue to offer dangerous and ineffective, but lucrative, therapies are exactly the sorts of doctors the government should be investigating.
Here’s more from the memo: “[I]t is important that the State takes a treatment-neutral approach where possible in order to ensure that medical professionals remain the discerning voice in defining appropriate medical care.”
What does “treatment-neutral” mean? Is the government supposed to treat all therapies the same, whether or not there’s any proof behind them? Also, if it’s so important that medical professionals remain the measuring stick for appropriate care, then why we do we need a bill protecting doctors who deploy treatments that the medical community itself has long since rejected as unproven and unsafe?
The bill is incredibly broad, and suggests that even the quackiest of medical practitioners might find shelter for treatments well beyond antibiotic therapy. M.D.s and their associates who prescribe unproven herbal treatments, for example, could point to the bill. After all, they’re using treatments “not universally accepted by the medical profession.”
The bill protecting chronic Lyme quacks from state investigation was delivered to Gov. Andrew Cuomo’s office on Dec. 5. He has 10 days to sign, veto, or simply allow the bill to become law. So far, his statements suggest he doesn’t understand the issues or recognize the difference between legitimate Lyme and chronic Lyme.
“I want to sign the Lyme bill,” he told the Poughkeepsie Journal in October. “My kids have had it. I lost a dog because of it. It’s a terrible disease.”
Let’s hope a doctor—a real doctor who follows the evidence—has gotten Cuomo’s ear in the meantime. This bill isn’t going to help his kids, or his dog.