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.
Doctors who offer dangerous and ineffective therapies are exactly the doctors the government should be investigating. 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.
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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“Slate has hired a writer with deep connections to the NRDC -a group at war with Lyme patients for decades over pesticides- to write a story as if it is free of conflict of interest. The conflict is that the Lyme patients spray their suburban lawns and the NRDC has had a long and vociferous campaign against this. The last time the Lyme community tried to pass a bill to protect their treatment in New York State, the NRDC was their major opponent. This is a terrible conflict of interest for someone purporting to be a journalist, and for the editor who hired this person. I am so surprised and disappointed that Slate has published this without vetting the author or his connections --or the longstanding fight over pesticides (not Lyme, but pesticides) at the core here. There are plenty of legitimate ways to run a story questioning the NYS bill -but you don't do it by using an author with such longstanding conflicts that are not declared. Very surprising.”
The health editor at Slate is Laura Helmuth and her email is [email protected].
Slate's Editor-in-Chief is Julia Turner and her email is [email protected]
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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posted
---------- Forwarded message ---------- From: Chris Fisk [email protected] Date: Thu, Dec 11, 2014 at 9:53 AM Subject: Terrible SLATE article To: Chris Fisk ctfisk@ gmail.com
Dear Friends-
An obnoxious, biased, and spectacularly ignorant article is making the rounds online today.
SLATE, the online magazine owned by the Washington Post, published an article (12/9/14) that is stunning in its breadth of inaccuracy, absence of balance, and mountainous misrepresentation. Add to that, profound disrespect of victims of tick borne diseases and their physicians.
The publication of such ignorance under the banner of journalism requires that the Lyme community, from coast to coast, call SLATE to account on this stunningly hateful and unprofessional piece.
Here is its headline and the link to the article:
Lyme-Illiterate New York is about to change its medical misconduct law to protect quacks.
The snarky and sarcastic tone and the implausible ignorance in this piece are so striking that we are wondering if this columnist has some ulterior personal agenda in penning this ridiculous, discriminatory rant. This piece is so insulting to Lyme victims and the people who care for them that we are alerting you to this article with the suggestion that you contact the Editor of SLATE with your feelings about this. That SLATE's editors allowed such poorly researched, biased, and incorrect material to be published is appalling.
You are welcome to add your comment to the bottom of the article, but if you want to double your impact, send an email comment to the editors who are responsible for this reporter. This guy is way out of his depth in reporting on this (or any?) subject. Such bias and ignorance has no place in any national publication.
The Lyme community has been working for over 20 years to gain the rights to choose their own treatment options and physicians that are afforded to every other group of patients. This is the RIGHT of every Lyme patient, and we have made great strides over the past two years in convincing our legislators to help us. Stand up for yourselves and for your friends and family and let SLATE know that they are out of bounds on this and that we want not only an apology, but a highly visible article by someone who is well informed on the subject, published in response to Brian Palmer's piece.
One more thing: We have come a long way in the past few years because our Lyme community has worked together to have our voices heard. You have been TERRIFIC in helping us to push our message to our elected officials. We need you again. Take this SLATE piece as a personal attack, and fight back.
Please share with your mailing lists.
Thanks to all.
Chris Fisk President Lyme Action Network
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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In the final days waiting for Governor Cuomo to sign the Lyme bill in New York that would ensure Lyme patients access to diagnosis and care, Slate magazine ran what can only be called a Lyme bashing piece designed to kill the legislation. LymeDisease.org responded with this letter to the editor.
Advocates have submitted opposing pieces to the Slate. Lyme patients, please write to the editors, demand an apology, and ask the Slate to publish a highly visible patient-centered article.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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