MsGrin has her “ways to make you write,” and she has worked her magic of persistence on me. But I’m afraid she is not going to be as happy with this diary as I would like. She has been campaigning ceaselessly to get Lyme Disease into the spotlight at Netroots Nation. In the service of that goal, she negotiates the minefield of politics in the U.S. today: name the current moneyed assault on the people and you run the risk of being marginalized. I am not without sympathy—it is difficult to believe that American public institutions have come to such a sorry pass. From what I could make out, MsGrin was hoping I would stick with personal anecdote and “just the facts, ma’am,” in hopes of better enrolling “centrist” thinkers in the cause. But my friends know that I am compulsive about naming things as I see them. Apologies to MsGrin.
My hope is to convince people that the Lyme controversy is political more than it is medical, and that political activism is a highly appropriate response. This is not a side controversy only for sick people—it is more the canary in the mine of the body politic, making plain the extent to which money and elitism have compromised our ability to respond to crises. The issue is distinctly different from the vaccination controversy, in which a corrupt doctor began a movement which persisted in the face of mountains of contrary evidence. In the case of Lyme Disease, a small number of powerful doctors are attempting to control the response of the entire medical community to a disease about which much remains to be learned. In the process, they have selectively ignored research, misrepresented their own conflicts of interest as well as the varied opinions of the wider medical community, and in other ways behaved in a biased fashion not befitting the gravity of the duty entrusted them.
May is Lyme Disease Awareness Month
Yes, May is technically over, but it seems we’re not quite finished with this year’s series. ;-)
Lyme is the most prevalent vector-borne disease and one of the fastest spreading diseases throughout the United States, and the subjects of diagnosis and treatment of Lyme are politically-charged.
This series of diaries is designed to provide information to the Daily Kos community both for Lyme disease prevention and for those Kossacks living with Lyme. Because the disease is often missed by physicians, these diaries may assist an individual or two in pursuing testing which might otherwise have been missed.
The Lyme Disease Awareness series is eclectic, including personal statements, informational pieces about the science of Lyme, and calls to action for community and political advocacy.
We hope you'll all join us all month in learning about this rampant disease and the medical/financial/political morass in which Lyme patients find themselves.
Whether or not you are a member of this group, it appears you will need to FOLLOW in order to have the diaries show up in your stream. We invite you to join and follow us.
Speaking of marginalization, the Infectious Disease website is filled with such phrases as “very small number” and “outside the medical mainstream.” Special scorn is reserved for “activists” who are pressuring the IDSA. To my knowledge none of the alternative Lyme doctors has been called a purist, but it wouldn’t surprise me. Since the 1980s, more than thirty doctors have faced investigation by their state medical licensing boards for providing Lyme disease treatments not recommended by the IDSA’s treatment guidelines. This number may seem small, but the doctors under assault tend to be the ones who are well-known, the ones who too often have represented the last hope for suffering patients who travel hundreds of miles in search of treatment. The decision by the Administrative Review Board of the New York Board of Medicine exonerating prominent Lyme Disease expert Dr. Joseph Burrascano is instructive:
[emphasis added]
With respect to incompetence/gross incompetence, the petitioner [OPMC] failed to meet its burden of proving by a preponderance of the evidence that Respondent [Dr.B] lacked the requisite skill or knowledge to practice medicine. The issues raised in this case pertained primarily to a medical debate in this field, rather than a demonstrated lack of competency by the Respondent.
...The Hearing Committee recognizes the existence of the current debate within the medical community over issues concerning management of patients with recurrent or long term Lyme disease. This appears to be a highly polarized and politicized conflict, as was demonstrated to this committee by experts testimony from both sides, each supported by numerous medical journal articles, and each emphatic that the opposite position was clearly incorrect... What clearly did emerge however, was that the Respondent's approach, while certainly a minority viewpoint, is one that is shared by many other physicians. We recognize that the practice of medicine may not always be an exact science, "issued guidelines" are not regulatory, and patient care is frequently individualized.
We are also acutely aware that it was not this Committee's role to resolve this medical debate, but rather to answer the questions raise in the statement of charges.
For a cogent and detailed critique of the various harmful actions of the IDSA Lyme Guidelines committee, I urge you to read the Statement By NatCapLyme To The ISDA Guidelines Review Panel On The 2006 IDSA Guidelines. I haven’t found a more succinct, evidence-based summary anywhere. I will not discuss these details further, except to say that NatCapLyme presents formidable evidence to support the case that chronic Lyme and associated co-infections are a “serious realized threat to public health,” that the 2006 IDSA Guidelines are “fundamentally flawed” in a way which “causes harm to patients,” that intimidation has created an artificial shortage of doctors who treat chronic Lyme and other tick-borne disease, and “argue against the use of the Guidelines for judging physicians and denying insurance claims.” The group makes specific recommendations, recommendations that went ignored by the review committee.
I recently attended a showing of Under Our Skin as a fund-raising event for a Lyme awareness group in Santa Barbara. After the film, which had me alternately crying in empathy and seething with anger, the film maker asked for a show of hands: “How many here have Lyme Disease or know someone who has Lyme?” Some 150 to 200 hands went into the air. The official statistics for Santa Barbara County is on the order of 10 cases. A local doctor specializing in Lyme who introduced the film told me he considers the disease to be endemic in our area—he sees 4 to 6 new cases a day. Just the year before, my primary care physician in Santa Barbara had told me to not to worry about a tick bite because “There is no Lyme in Santa Barbara County.”
What is behind this dysfunctional response to a serious health problem which continues to worsen? I will reference the documentaries Inside Job; Food, Inc.; and Under Our Skin in contending that corruption is the culprit. Centralized power among a few corporations, power which extends to undue influence over the engines of public policy, is a common theme among the food industry, the financial services industry, and the health industry. The assault on climate science could be mentioned as well. While the means of exercising monetary influence, to the detriment of the common good, differs among the sectors, there are clear patterns. In each arena, academic work has shifted from focus on social good to focus on private profit; average workers in the fields are controlled and/or motivated through varying combinations of intimidation, regulation, debt, and lawsuits; conflicts of interest either go unnoticed or are accepted without concern; control of each industry is concentrated in a few key players; and all these industries enjoy government influence which the average citizen cannot hope to match.
In a discussion on Bill Moyers Journal, William K. Black defined fraud. I am not accusing the IDSA of conscious fraud, but their behavior seems to be in the same family.
Fraud is deceit, and the essence of fraud is I create trust in you and then I betray that trust and get you to give me something of value. And as a result, there is no more effective acid against trust than fraud, especially fraud by top elites.
snip
The art form is not simply to defeat those internal controls but to suborn them, to turn them into your greatest allies…
[Moyers reads from Black’s book] Calculated dishonesty by people in charge is at the heart of most large corporate failures and scandals.
One response to the honesty of Black in hunting down corporate cheaters is all too typical of our age. In an internal memo, banker Charles Keating wrote: “Get Black. Kill him dead.”
While thousands of Americans suffer, and some die, the official stance by the most influential board with respect to treatment is that Lyme Disease is easily treatable with a short course of antibiotics. Incredibly, the official stance with respect to chronic, persistent Lyme Disease is that it does not exist, the latter couched in language of reason and scientific evidence while itself making little sense even theoretically when one considers what is known about the spirochete which causes the disease, the considerable experimental evidence against this position, and the anecdotal evidence of an ever-growing number of suffering Americans. Why do the 14 members of the original IDSA panel which developed the guidelines hold to their position so vociferously? Why are physicians who pursue alternate treatments to the benefit of their patients under attack when the guidelines are purportedly voluntary? I don’t claim to have a definitive answer to these somewhat baffling questions, but I believe it will be soberingly useful to take a look at the forces which are creating ever increasing dysfunction in U.S. institutions. The trend is toward corruption of the institutions whose purpose is to represent the common good.
"I’m just to the point, it doesn’t matter any more. Something has to be said."
Chicken farmers are in debt an average of $500,000, which they borrowed to build their facilities. After they have paid for their expenses, most of these payments going to the same company which contracts to buy their product, farmers make an average of $18,000 a year. Consolidation and vertical integration have decimated competition in this industry, leaving farmers at the [pdf] mercy of a few powerful companies. Meanwhile, strict guidelines control the behavior of the farmer. As the farmer depicted above says later in the film, “It’s demeaning.”
The average medical student graduates with nearly $100,000 in student loan debt. Compound this with slow physician salary growth, young physicians are faced with increasing difficulty in paying their college student loans and medical student loans. Compare this with Stan O’Neal, CEO and owner of Merrill Lynch, who received $90 million in 2006 and 2007 alone. After driving his firm into the ground, Merrill Lynch’s board of directors allowed him to resign, and he collected $161 million in severance. There are better ways of making money than plugging away in a nine to five medical practice with decreasing autonomy.
At my check-up last fall, with a doctor I have liked, who has been personable, I felt I may as well have been with an insurance adjustor. The near-sacred aura of the examining room had given way to automatized assembly-line feel. My doctor was following the latest demands from insurers by typing into his laptop the entire interview, not making eye contact with me once as I described my state of health. Although I mentioned my Lyme Disease three different times, informing him that I had recently tested positive again (through a naturopath), he said nothing concerning either Lyme or my concerns.
As a bitter side note, it is interesting to compare the seemingly unrestrained use of antibiotics in animal feed with the grave concern being expressed about the long-term antibiotic treatments that have saved the lives of many sufferers from chronic Lyme, those with the will and luck to find a doctor who would not turn his back on them. A boring study provides one possible explanation:
GlobalData has estimated that the Lyme disease therapeutics market was worth $2.2m in 2009. The major reason for this limited market revenue is that there is no approved drug specifically for Lyme disease treatment. Antibiotics such as doxycycline, cefuroxime and amoxicillin are currently prescribed. The patent protection of all these antibiotics expired long ago and many generic versions of the antibiotics are available very cheaply. In 2009, the annual cost of therapy for Lyme disease with antibiotics was $81. Between 2001 and 2009, the Lyme disease therapeutics market grew only at a Compound Annual Growth Rate (CAGR) of 6.1%. The late-stage pipeline for the Lyme disease therapeutics market is very weak and is entirely made up of antibiotics that are currently used as off-label drugs. Therefore, even though these drugs will receive regulatory approval for the Lyme disease therapeutics market, the entry of antibiotics is expected to have a negligible impact on the market in terms of sales value and volume. Overall, between 2009 and 2017, the Lyme disease therapeutics market is expected to grow at a CAGR of only 4.8% to reach $3.2m by 2017.
Incidentally, the linked website is chock full of excellent information concerning the politics of Lyme.
Owning Life Itself
According to Kris Newby, the Lyme fiasco is a result of a perfect storm of two related developments: a 1982 Supreme Court decision allowing patenting of life forms, and the advent of managed care. The first factor encouraged researchers to privately pursue development of valuable patents at the expense of mutual scientific cooperation for the public good. The same law has created a sea change in the lives of farmers as well.
Is this far afield from the conditions creating difficulty with Lyme? I find a few similarities striking. Some thirty years ago, land grant colleges developed seeds on the public dime for the public good. Today, profit rather than the public good is nearly the sole motivator for major research in seed development. Most significant is the notion of a chemical company controlling what farmers do much as insurance companies now exert much control over the behavior of doctors. Dr. Joe Jemsek, whose license was revoked in North Carolina for providing care to chronic Lyme sufferers, calls it “practicing medicine without a license.” And even more than with farmers, we find concentration in the insurance industry. A study by the American Medical Association [subscription wall] found that “the vast majority of U.S. health-insurance markets are dominated by one or two health insurers. In California, the most competitive state, the top two insurance companies shared 58 percent of the market. In Hawaii, the top two companies shared the entire market.” Lack of competition means higher costs and less responsiveness to consumer needs. The primary obstacle to an efficient health insurance innovator swooping in to a market dominated by bloated profit-takers? Government regulation favorable to reliable campaign contributors, i.e., the existing players.
Pharmaceutical companies also exert undue influence in the decisions being made by doctors. In Food, Inc., we see a farmer who cleans seeds being shocked to learn that Monsanto has a copy of every check he has written for the last ten years. Similarly, the pharmaceutical companies now have access to every prescription your doctor writes, and if they feel he lacks proper enthusiasm for their product, they can apply pressure.
Another similarity to me is the way in which people gradually become accustomed to new circumstances. I have little doubt that the doctors who wrote the IDSA Guidelines felt justified in their behavior. In his excellent book, How Doctors Think, Dr. Jerome Groopman describes the ratcheting up of pressure from a pharmaceutical salesman on a doctor who had chosen to ignore his little gifts and increasingly aggressive invitations to sell his product. “Why don’t you like me?” the saleman asks innocently. Soon enough the doctor is asked the same thing by her superior, “What do you have against so-and-so?” It all seems so friendly and innocent, this sacrificing of the common good for the sake of private profit.
Here’s how William K. Black describes the process of corruption in a corporation:
The wonderful thing about fraud is that it produces guaranteed record profits. So the person at the top sets a tone that is corrupt. Then he creates financial incentive structures where, if you cheat, you make a lot of money. And if you don’t cheat, not only do you not make a lot of money, you get in trouble. You get in trouble in the sense that you don’t get your bonus because you’re not producing income, but worse—far more powerful—you keep your friends, your peers in the organization from getting their bonus. The people who have the greatest moral backbone leave, and the folks that stay become ever more used to an environment in which cheating is the norm. Pretty soon, they almost always start joking about it. They tell these people that are prospering by cheating that they’re geniuses, that they’re transcendent, it’s like the ubermensch, transcends normal human morality because they’re better and brighter than all of us. It’s social Darwinian thought taken to the absolute max, and it degrades everything.
When I heard that, I thought of the certainty with which the likes of the IDSA board members declare suffering people to be faking it.
The woman unable to stand up straight in her front yard, also shown thrashing about on her hospital bed, was told by a doctor that she was a pretty girl who felt she wasn’t getting enough attention. Thanks to sensitive, determined, long-term provided by the defrocked Dr. Jensen treatment (and her own fierce will), this lovely woman is now so much improved that she is training as an EMT in San Francisco, an outcome which seems hard to imagine given the extent of her debilitation at the height of her illness.
Conflict of Interest or Ubermensch?
It is difficult to speak clearly about unholy forces these days. One difficulty is imagining seemingly decent people making simple decisions which have disastrous effects for distant humans. Such a situation can arise without the need to imagine evil intent, or cackling conspiracy. We have seen doctors and farmers hiding their identities on video. Why? One was treating patients with antibiotics while the other was saving his seeds from year to year. You will not see such fear of punishment from the economist who accepted $124,000 from the Iceland Chamber of Commerce in return for a report inaccurately declaring Iceland's financial industry as on solid footing. To my mind, the following academic economists seem never have considered the implications of their conflicts of interest:
Please watch the first 3:34 of this video, to Part V. You will see the highly intelligent and well-spoken Chairman of the Harvard Economics Department make plain that the problem of conflict of interest for academic economists had never even occurred to him. Others being interviewed are Glenn Hubbard, Dean of Columbia Business School, and Frederic Mishkin, Columbia Business School professor and former Governor of Federal Reserve.
Notice that the conflict of interest of a doctor treating a patient is taken as an archetypal example, as a situation which any decent person should be able to grasp. Here is an [pdf] excellent description of less venal sorts of conflicts to which most of us normal people can imagine falling prey.
Sniderman and Furberg argue that the developers of treatment guidelines can become ‘promoters and defenders’ of the guidelines produced under their auspices. When an organization’s guidelines are legally challenged — as they were here — the validation of the guidelines may become an overarching focus, and to do so quickly and quietly to minimize damage in the press may become a primary goal. Validation of the IDSA Lyme guidelines would permit IDSA to continue to use them to limit competing views of the disease, maintain IDSA’s sphere of influence, continue its domination in the marketplace, and reduce potential litigation risk based on the guidelines. In short, the Lyme guidelines review process constituted a classic conflict of interest: IDSA’s organizational interests trumped its interest in maintaining the integrity of the review process necessary to provide guidelines that hold patient interests paramount. The settlement outlined a process that was primarily run by IDSA, which controlled many of the procedural issues. Given what was at stake, would IDSA be able to set aside its self-interest and decide the issues impartially?
Synergy--Everything Involves Everything Else
I was discussing this diary with a landscaper friend, a person who watches nature closely. This native-born Vermonter had never seen a tick until six years ago. Ticks are now in Vermont with a vengeance. Is there cogent public discussion of this obvious change? I listened to two baseball announcers chatting when a tornado warning had delayed a game in Cleveland. “Is it climate change?” one asked his partner.
“Ha ha,” the partner chuckled uncomfortably. “Trying to set me up, eh? I’m not even going there.”
We can’t even discuss climate change publicly, because anyone who does runs the risk of becoming one of the marginalized ones, one of the “small number” of left-leaning whiners who are so negative all the time. You know, “out of the mainstream.” On the official level, my friend informed me that the U.S. Department of Agriculture has delayed producing their climate zones map for several years. For three years they sat on the updated map they had contracted with the American Horticulture Society to produce, and when the AHS published the map on their own, the USDA told them to take it remove it from the internet. Naturally the new map showed the warming trends all sensible people know are happening, in much the same way that thousands of sensible people know that they are suffering from chronic effects of Lyme Disease. Can we even talk about these things without calling one another names?
“How many people have to suffer in plain view? How many people have to die?”
I’ll give Leslie Wermer the last word. She died a year and a half after the following was taped. Many people don’t have strong empathy for suffering chickens—they only see dumb animals. The victims of bankster fraud or drone attacks can seem distant. But now family members and friends are suffering before our eyes. Is this enough to mobilize us? Dr. Jemsek said, “The way in which a society deals with marginalized populations is the signature and indelible stamp of that society’s character.” I’m sorry, but to me, the outcome is in doubt. Some of us will watch the following video and feel strong empathy, a desire to help. Others will see a person with mental problems and insist that there is no help. Do not doubt for a moment that there are people, people addicted to money or power, for whom the suffering of Leslie Wermer will have as little impact on their lives as the struggling, dying chickens in an inhumane Perdue henhouse.
ALSO FROM THE 2011 LYME DISEASE AWARENESS SERIES:
Welcome to Lyme Disease Awareness Month
The Mysterious Case of the Shape Shifting Spirochete
Researchers on Persistence In Lyme Disease
This is Your Brain On Lyme (A Personal Story)
What Do Lyme Disease and Syphilis Have in Common?
Lyme Disease Rant: The Wall of Polarization
Study Shows "immunologic abnormalities" in "Post Lyme Patients"
Lyme Disease & Antibiotics: More Than Skin Deep
Lyme: A Lament on Languishing
The Environment and Human Disease