LYMEPOLICYWONK: Senators Request Removal of IDSA Lyme Guidelines from National Guidelines Clearinghouse

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:

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.

You’ve all heard that the latest drum-roll from the rheumatologists at the IDSA hearing was essentially to say that Lyme patients have persistent symptoms and they started off with infection, but now we don’t “believe” in persistence—so what do you call it? How about “medically unexplained symptoms” or MUS for short? All of this seems to regard the real problem with Lyme disease as being what you call it. But patients know the real problem with Lyme disease is how you treat it, how you cure it, how you restore patients to their lives. Disease definitions like MUS are for drug-makers who sell drugs to a market, physicians trying to claim professional turf, and insurers trying to deny treatment reimbursement. They are not for patients. Abraham Lincoln had it right when he said: “How many legs does a dog have if you call the tail a leg? (Answer) Four. Calling a tail a leg doesn't make it a leg.” I’m not the only one who finds these acronyms aggravating and unhelpful. A post from the internet nails it:

The IDSA is expected to extend the time period for document submissions to the 24th of April. Jennifer Padberg expects to post a new calendar of events early next week, at which time she also expects the application process for presenters to be opened. The presentation date will likely be pushed until summer. Presenters will be selected by the IDSA, the ombudsman, and the Connecticut Attorney General. ILADS-affiliated speakers will be permitted an equal amount of time for presentations. I will post more news as it becomes available.

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 that I am honored to be a patient representative for the PCORI patient engagement panel. PCORI stands for Patient Centered Outcomes Research Institute, an agency created by Congress that funds $500 million dollars of research a year.) What is unique about PCORI is that it funds research that is “patient centered”—research that puts patients at the center of the process. Today, PCORI has released the standards for measuring whether research is truly patient centered. These include involving patients in determining the research questions and the characteristics of study participants, monitoring the conduct of the research, participating in study recruitment and data collection, and the dissemination of study results. The standard calls for reciprocal relationships where researchers and patients learn from each other. It also calls for patient/researcher partnerships and an environment of trust, transparency and honesty. Now, doesn’t that sound like something that Lyme patients need?