Because the Kos community is, as a whole, a liberal, activist, progressive community, many of us feel inherently at odds with certain other groups. Republicans? Well, yes, but not in this case. Insurance companies? Ah ... there we go.
And so a recent diary was rescued to the main page and recommended, in the name of a crusade against the evils of insurance companies. Now, I couldn't be an apologist for the health insurance industry without having to go scrub myself clean. But in this case, Big Insurance isn't the problem. The ease by which progressives are seduced by not-quite-accurate medical misinformation is. Follow me below, with a very different take on Lyme Disease...
Before I get into the details of Lyme, let's talk about another part of the left Web: Huffington Post. HuffPo is certainly "new media," supports a wide range of progressive and liberal causes, is on the Daily Kos's selective blogroll, and is a pernicious source of medical misinformation. At HuffPo, that takes the form of anti-vaccination tropes and the occasional support for homeopathy. HuffPo staff have been demonstrably sympathetic to those causes, and the responses to pro-hard-science counterpostings are ... well, they aren't so pretty. Daily Kos must not follow that road. This community has embraced the banner of "reality-based" with pride. So here's reality. It's not short; reality isn't a soundbite:
The Lyme diary to hit the front page and recommended list argued that insurance companies are persecuting, suing, and even stripping licenses from doctors who are trying to help "chronic Lyme" patients. The therapy highlighted in the article is long-duration antibiotic treatment with doxycycline. Let's start there.
Doxycycline is one of the cheapest broad-spectrum antibiotics. The wholesale cost for doxycycline generics is about 10 cents for daily dose of one tablet. There are legitimate long-term uses of the drug, such as malaria suppression and prophylaxis and treatment for certain kinds of acne, among others. It's a useful drug. Even if you're on it for a year, that's $75 wholesale. That, you might notice, is really cheap for a drug! For comparison, my local pharmacy charges just over 8 cents per tablet for regular strength Tylenol (or about 6.5 cents/tablet for the generic); I know I take more than one a day when I need it. If there was a $75/year therapy that was effective for, well, any serious disease, insurance companies wouldn't suppress it; they'd mandate it! Paying their share of a dirt-cheap drug is cheaper for an insurer than paying for all those doctor's visits, much less hospital stays or short term disability. So what's going on? The answer is that insurance companies don't want to pay to press real drugs with real side effects into service as glorified placebos.
Lyme Disease is a fairly nasty infection transmitted by tick bites. It is characterized by a distinctive rash that not everyone gets. It causes a laundry list of symptoms from virtually every body function, based on where the little screw-shaped bacteria wind up in the body. This makes it something of a challenge to diagnose. As an added bonus, it's essentially impossible to culture in the laboratory, and the two primary diagnostic blood tests have ... issues. One has a tendency to give false positives, the other false negatives. But -- and this is a big one -- not nearly at the level of inaccuracy claimed here. In sympotmatic, early cases, the Western Blot test is over 94% specific.[1][2] Once diagnosed, though, treatment is easy. One course of doxycyclin and you're done. Case closed. Usually.
But a significant minority of Lyme patients (about 2%) don't get to call it case closed. They develop serious lingering symptoms: fatigue, muscle pain, loss of memory, lack of concentration. Some still test positive for the bacteria. Most don't. Complicating issues, the quackiest quacks in "alternative medicine" jumped on the bandwagon of "chronic Lyme" and like to diagnose it in places where the disease isn't even endemic, without any history of infection to begin with.
I don't want to demean or belittle the sufferers of these symptoms and syndromes. Many probably really are caused, in some way, by the infection. In fact, contrary to the tone of the front-paged diary ("Why don't doctors admit to working with Lyme disease?"), research is promising. The way that the Lyme bacteria disperses itself through the body causes a significant immune response that, in some people, continues long after the bacteria are gone. Basically, they get into all kinds of places, and the immune system, on a crusade to drive them out, attacks the body itself. [3] Antibiotics cannot fix that.
In fact, we've already shown that to be the case. Antibiotics don't help "chronic Lyme," whatever its cause may be. [4][5] What they do of course, is contribute to the evolution of antibiotic-resistant pathogens like MRSA. And, of course, doxycycline has its share of side effects; some 10% of long-term patients suffer extreme photosensitivity, sometimes including thickening of the skin that itself requires treatment. No wonder insurance companies don't want to pay for it when it won't do any good!
...unless, of course, there was some giant medical conspiracy... Which is what the previous diary in this so-called Lyme literacy series alleges. ISDA, the Infectious Diseases Society of America, is a professional medical association that has come down strongly against long-term antibiotic therapy for "chronic Lyme". This led to Connecticut AG Richard Blumenthal (arguably no stranger to conflicts of interest here, himself [6]) opening an investigation into the proceedings of ISDA, claiming antitrust violations, conflict of interest, and tampering with scientific conclusions; all of which that other dairy neatly spells out.
The investigation was closed without charges. [7]
Whatever is going on with "chronic Lyme" is terrible for its sufferers. The vast amount of serious misinformation is perhaps just as bad as the disease itself. 49% of online sources about Lyme in 2004 were instead sources of major misinformation. [8] Like so many other syndromes and conditions, what is needed is more research: better detection, better treatment, and a better idea about just what is happening to these patients. Medical research. Affordable health care. Those are good, progressive causes. Those are what Daily Kos and the Kos community can, has, should, and will support.
But claims of a medical conspiracy, of insurance companies engaged in self-defeating suppression of cheap "cures" to keep patients suffering ... is quackery. It's the first step down the road that ruined science journalism at the Huffington Post. The front-paged diary that I've much maligned here quotes a doctor lamenting the "'thought leaders' who are the 'experts'." Where have I heard that recently? The call to stand up to the "experts?" Glenn Beck.
We're better than that here.
We're a reality based community, so here are the references to back up the big claims. Journals and real news sources, not anecdotes and YouTube videos.
[1] Engstrom SM, Shoop E, Johnson RC (1995). "Immunoblot interpretation criteria for serodiagnosis of early Lyme disease". Journal of Clinical Microbiology 33 (2): 419–427.
[2] Sivak SL, Aguero-Rosenfeld ME, Nowakowski J, Nadelman RB, Wormser GP (1996). "Accuracy of IgM immunoblotting to confirm the clinical diagnosis of early Lyme disease". Archives of Internal Medicine 156 (18): 2105–2109.
[3] Singh SK, Girschick HJ (2006). "Toll-like receptors in Borrelia burgdorferi-induced inflammation". Clinical Microbiology and Infection. 12 (8): 705–717.
[4] Klempner MS, Hu LT, Evans J, et al. (July 2001). "Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease". New England Journal of Medicine 345 (2): 85–92.
[5] Kaplan RF, Trevino RP, Johnson GM, et al. (June 2003). "Cognitive function in post-treatment Lyme disease: do additional antibiotics help?". Neurology 60 (12): 1916–22.
[6] Whelan, David (2007-03-12). "Lyme Inc". Forbes.
[7] Landers, Susan J (2008-06-09). "Lyme treatment accord ends antitrust probe". American Medical News.
[8] Cooper JD, Feder HM (December 2004). "Inaccurate information about lyme disease on the internet". Pediatric Infectious Disease Journal 23 (12): 1105–8.
EDIT: Wow, I go to sleep and top the rec list. I want to respond to a comment posted a couple times in the comments. Yes, there has been some indication that members of ISDA had undeclared conflicts of interest and did some not wholly-legitimate things with the business side of the organization. But none of the reports, such as they are, found a single problem with the science behind their statements. This is a common problem in all of politics, not just science. The people are ... well, they are people. So they are flawed. But the ideas they champion are not, and their political enemies use the human foibles as a cause to discount those ideas.
Blumenthal claims that the people at ISDA are the reason research in the field is limited. Paul Auwaerter, infectious disease director at Johns Hopkins, on the other hand, claims that it is in fact the pressure brought to bear against doctors to adopt anti-science stances (including the huge debacle that was the ISDA investigation -- I could do a diary just on that) that have created a "poisonous atmosphere" for further research.
And poisonous it is. At least one doctor, at the New England Medical Center, had to be assigned long-term armed security due to death threats over his refusal to adopt antibiotic therapy for "chronic Lyme."