Lyme Policy Wonk

Here’s an interesting approach to conflicts of interests offered by one of the fathers of evidence based medicine, Dr. Gordon Guyatt. The topic was guideline development and the interests of those serving on a guideline panel in having their pet theories and research promoted in the guidelines. Why is this important to researchers? It helps further the academic careers of researchers when their work is cited, referred to and used as the foundation for creating treatment guidelines. There is a dynamic tension between the use of expertise and the potential bias expertise may bring to the table. Those of us in the Lyme community are only too familiar with the fact that the IDSA guidelines were developed by academic researchers and that references to their own research dominate the guidelines. Being tied to a theory that your research has advanced creates a bias towards reinforcing that theory in the selection of evidence cited, the evaluation of that evidence, and the development of guideline recommendations that confirm that bias. Guyatt’s perspective is novel and interesting. In his mind the way to manage this bias is not to exclude the researchers from sitting on the guideline panel but to limit their ability to misuse their power to further their own ends. Hence, those with what he called a primary conflict of interest are precluded from chairing a guideline panel, drafting recommendations and voting on them and even the ranking of evidence. Read how he defines an intellectual conflict of interest and how he would restrict participation in guideline development by those with intellectual bias.

The cost of an illness includes medical and non-medical costs. Insurers bear the burden of medical costs for covered care, while society bears the cost of non-medical burdens. Saving a buck from insurance costs, only to spend 4 bucks on non-medical costs helps insurers at the expense of society. It really shifts the burden of an illness from the insurer to society. A recent article by Dr. Cameron makes this relationship in Lyme disease clear. The article "Proof that Chronic Lyme Disease Exists" was published as an open access article (meaning you can read it and download it without cost). He has done a thoughtful job pulling together statistics from a number of different studies to demonstrate the high rate of persistence of arthritis, neurocognitive impairment, neuropathy, skeletal pain and fatigue for years after treatment in patients diagnosed with Lyme disease. For instance, the rate of persistence of symptoms in patients after short term treatment for Lyme disease was 34% in Massachusetts.

Biased reporting harms the credibility of journalism, harms patients, and misleads the public. The recent Tribune piece, which is now being republished in other Tribune outlets (including the Los Angeles Times) distorts and manipulates reality and makes a ‘good story’ at the expense of professional journalism. It does this by ignoring science, and by characterizing patients as hapless victims and their physicians as frauds. It was called to task for its profound lack of professionalism by Knight Science Journalism Tracker. Articles on science that do not present both sides of a legitimate controversy in science do a serious injustice and may violate the canons of journalist ethics established by the Society of Professional Journalism. Today, I look at some of those canons and point out how the Tribune article fell short. More after the jump. . .

Lyme patients take a lot of heat, frankly too much heat. Sometimes reporters make errors, don’t have enough facts, and aren’t fully informed. And that is rough. But it is even rougher when reporters are informed and given the correct information and then ignore half of it. So what do you do? Well, CALDA has written the Chicago Tribune protesting the highly biased reporting in its December 8, 2010 article on Lyme disease. We have asked them to publish an Op Ed piece by CALDA. We believe that reporters have an ethical obligation to report on stories in a balanced manner. They also owe it to patients to set out both sides of a scientific debate. To do otherwise, puts the lives and health of thousands of sick people in danger. What do you think? If you are interested in supporting this effort, please write the Tribune (emails below). Ask them to publish an Op-Ed by CALDA to set the record straight. A tip of the hat to Ellen and the NYC Lyme Activism group for their wonderful work on this project. More information after the jump. . .

Some of you know Dr. Phil Baker, formerly of the National Institute of Health, currently of the American Lyme Disease Foundation—a group some regard as a front organization for the IDSA. (4 of the 7 ALDF directors were authors of the IDSA guidelines.) You might know that he oversaw the NIH Lyme disease trials. You might know he testified on behalf of the IDSA at the IDSA review panel—7 of the 8 panel members chosen by the IDSA were IDSA members. You might know that he characterizes the findings of that panel as “independent”, that he characterizes patients as vulnerable fools, and their treating physicians as predators. He has a certain viewpoint, it seems. But in his mind, there is no disagreement among gentlemen about science. It is odd for a man of science to refuse to read peer reviewed research to the contrary. In his mind, are there truly only heroes and villains? No real science. Well, then. Dr. Stricker and I rebutted his editorial and for once, it is available on line. I quote a snippet and then give you the link for the response and counter, counter, counter—whatever…

If you are a journalist, is it sufficient to talk with a number of people and then disregard half of what you hear? How about if you only disregard all of the science supporting one side of a scientific debate? If you replace the opposing side’s science with ad hominem attacks? Are journalists supposed to “choose sides” in a debate? If you do, is it journalism or an editorial? What about the obligation to tell a balanced story? One always hopes that journalists will take their responsibility to inform the public seriously and tell the complete story. These reporters did not.

Lyme disease patients have trouble with insurance coverage. They have trouble getting health insurance if they have ever had Lyme disease, on the one hand. On the other hand, they have trouble getting the disease treated because insurers rely on the IDSA guidelines to take a "free pass" on treatment reimbursements. This is an area that is clearly governed by something other than providing quality health care to patients. Have you ever wondered what happens–really happens–when Lyme patient appeal an insurance denial? What happens is we succeed 9% of the time, while other diseases succeed 40% of the time. What is going on here? How can that be?

On April 22nd, the IDSA guidelines review hearing panel rubber-stamped its Lyme disease guidelines in its final report of the hearing. Those of us who presented and attended the hearing were appalled. Sure we had our reservations about the ability of a panel stacked with IDSA members to impartially review the guidelines, but there were 1,600 pages of peer reviewed evidence that had been presented to the panel and independent scientists had attested to the persistence of the Lyme bacteria and the low quality of the tests. How could they ignore the weight of such evidence? How could they decide to leave the guidelines completely unchanged even though a panel of their own choosing was divided on the testing? To make matters worse, the IDSA then trumpeted the results of a stacked panel as "independent" in their report. Dr. Stricker and I were given the opportunity to respond to the IDSA "spin" and our letter to the editor was just published. An excerpt follows:

On September 29th, Congressman Christopher Smith (NJ) introduced into the Congressional Record a report exposing the gaps in research in Lyme disease. The report was originally commissioned by the Institute of Medicine (IOM) from the California Lyme Disease Association, the national Lyme Disease Association, and Time for Lyme. However, the three groups pulled out of the IOM process because of a lack of transparency and the high degree of bias in the process, which undermined its integrity and could harm patients. The Congressional Record represents an opportunity to communicate key research gaps in Lyme disease in a credible venue. The report is available on line. The press release about the Research Gaps Report and the link to the Congressional Record of the report, follow. . .

I have gotten some thoughtful comments on my blog posts about the Institute of Medicine’s upcoming Lyme “state of the science” workshop. I want to share my thoughts about why CALDA pulled out of the process and why we will stay out unless there is dramatic change in the program. Whether it is best for groups to participate in a process even though it is biased is always a judgment call that depends on how biased the process is—in short whether you do more harm than good by staying in. CALDA pulled out because we represent Lyme patients and do not believe that we should legitimize a highly biased process by participating in it. We do not believe this is in the best interests of patients. Let me break this down a bit in terms of what is happening at the IOM workshop to explain why I believe it is highly biased.