CALDA and Time for Lyme (TFL) want to thank everyone for their help on the petition asking Connecticut Attorney General Blumenthal to further hold the IDSA accountable. Although the petitions were limited to Connecticut residents and the timing fell in the midst of school graduations with all of the time those entail, approximately 2,500 signatures were collected and are being sent to him.
What do Representatives Chris Smith and Frank Wolf have in common? They know how to ask the right people hard questions. What do the IDSA, the NIH, and the IOM have in common? They’ve honed the skill of the artful dodger. Representatives Smith and Wolf want to know why the NIH “stepped back” from its charge to run a state of the science conference and handed that hot potato to the IOM. One big difference between the NIH process and the IOM process? The NIH process considers bias a conflict of interest, meaning IDSA folks wouldn’t be sitting on an NIH panel. But, drum roll. . .the IOM permits panels to be biased and coincidentally has a panel that consists almost exclusively of IDSA folks, 4 of 6 panel members. Oh, and one more thing, the IOM is not technically considered to actually be ‘the government’. This is a picture perfect example of plausible deniability. The NIH didn’t stack a panel. The IOM did with IDSA folks. But, hey, they like bias and they are not accountable, are they? A copy of the letter from Representatives Smith and Wolf to Dr. Francis Collins of the NIH together with Collins response can be downloaded at the bottom of this blog post.
There is a big debate going on now about how to control health care costs. (Surprised?) Obama has been relying on the Dartmouth Atlas project by John Wennberg to support his assertion that there is enormous waste in the medical system that varies by geographical region that needs to be curtailed. Gardiner Harris, a reporter for the New York Times, has taken issue with this assertion and lobbed criticism at some of the underlying assumptions in the Dartmouth Atlas project. Congress has started looking to control costs by enforcing reductions in higher costs areas like New York. Not so fast says the NY Times. Increased cost may also reflect higher quality care and before we act on data, we need to make sure we have it right. Merrill Goozner, has a good post on Gooznews dissecting the debate. I have followed Wennburg’s work for years and offered my 2 cents on his work and its implications for patients who need to have treatment options available. This debate is at the core of quality healthcare and individualized patient needs. My comments posted on the Goozner site as well as links for all follow the jump.
I have to say, I have not heard encouraging things about the IOM process. Most folks think the IDSA simply plucked a friendly forum to reaffirm its beleaguered Lyme guidelines and the tainted Lyme review panel process. The big question is: Does this process have any substance or is it just a matter of going through the motions? Is anybody listening on these "listening" phone calls? Is the IOM offering to listen to anyone who cares?
The broad debate about the role of consumers in health care policy is important to the Lyme community. However, many of the things that have harmed Lyme patients, powerful unresponsive medical societies with conflicts of interest, the patients’ lack of voice in the process, and access to care limitations should concern every patient, regardless of the disease. An important article on patients and their skepticism for evidence based medicine appeared in Health Affairs this month. (“Evidence That Consumers Are Skeptical About Evidence-Based Health Care”). Ray and I responded to the article with an eletter, “Consumer Acceptance Depends on Whether Guidelines Reflect Patient Values”, which is published with the article. Links can be found after the jump.
Dr. Stricker and I have published a new peer-reviewed article on the flawed IDSA Lyme guidelines development process, the antitrust investigation, and the lack of impartiality in the mandated review process run by the IDSA. The article is now the number 1 accessed article of the publisher with over 1600 hits in the week since it was published. (Johnson L, Stricker R. “The Infectious Diseases Society of America Lyme guidelines: A cautionary tale about development of clinical practice guidelines,” Philosophy, Ethics, and Humanities in Medicine;5:9 2010.) The article is open access. The two lead in quotes set the stage. The first is by one of the nation’s founding fathers, Thomas Jefferson: ‘Without health, there is no happiness’. The second quote is by Thucydides and speaks to power and its abuse. ‘The strong do what they can; the weak endure what they must’. An excerpt of the article follows the jump:
A new article in Health Affairs, Evidence that Consumers are Skeptical About Evidence Based Health Care, draws an important conclusion: “Clearly, consumers will revolt if evidence-based efforts are perceived as rationing or as a way to deny them needed treatment.” Bingo! This is why patients with Lyme disease are in revolt.
The IDSA recently reaffirmed its beleaguered Lyme guidelines with a panel it selected of IDSA members. (Aren’t we all surprised?) Turns out the CDC can’t be quick enough to endorse the IDSA after the IDSA vindicated itself. Overly clubby, don’t you think? The IDSA’s cavalier dismissal of 1600 pages of peer reviewed evidence rebutting its guidelines recommendations actually took my breath away. Now, it seems that the NIH is handing the “hot potato” of a “state of the science” review of Lyme disease that it is mandated to do by law to an “independent” government group, the Institute of Medicine— which, also, surprise-surprise, is composed mostly of IDSA members (according to my sources 4 of 6 members), in what seems like a saga of deniable accountability. (I would so love to be wrong on this.)
We know spin when we hear it. Politicians like Bush (but not him alone) and talking points taken to the extreme. This is politics, right? So, why is Reuters calling research conclusions “spin” and why am I not surprised? Politicks as usual. At the IDSA hearing, one of the things that I asked the panel to do was to determine whether the conclusions of the key studies were supported by their findings or, instead, reflected the politics of this disease. A new study reported in Reuters talks about how conclusions and titles of studies become “spun” to support non-science agendas. Perhaps the bottom line is that you can take the science out of the man, but you cannot take the man out of the science. We regard science as sacrosanct, but inevitably it goes through the filter of a person, with all the human failings that entails, including observer bias, and, in our more jaded world, "spin". The Reuters article, tongue in cheek, says: “Scientists are no strangers to spinning their research, a new study — presumably not spun — shows.” Bottom line: ”In this representative sample of RCTs published in 2006 with statistically nonsignificant primary outcomes, the reporting and interpretation of findings was frequently inconsistent with the results.”
I suppose it was inevitable. The IDSA, due to inattention (hey, it happens with age), lack of oversight, control, or, shall we say, “iron fist” over its members, permits not one, but TWO poster sessions at its last annual meeting that point out that—drum roll—the IDSA guidelines across the board (not just Lyme guidelines) are just—well, not based on science or evidence for the most part. Thomas File, the author of this article, is on the board of the IDSA and he is with Summa Health System: He takes the IDSA defense and explains why evidence is not necessary for evidence based guidelines..
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