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Sooner or later, anyone dealing with Lyme disease comes face to face with the high cost of prescription medicines. Even those who start out with insurance coverage for drugs may find their benefits run out before their need for them does; or the medicines they require aren’t covered on their plan; or the co-pay for certain drugs is inordinately high. Then there are patients who flat out have no insurance coverage for drugs at all.
The task for an author who wants to write a book about Lyme disease is daunting. This is due not only to the complex illness itself, which can manifest in literally hundreds of ways, but to the complicated history and politics which keep Lyme disease in a separate category from other medical conditions.
Merrill Goozner at Gooznews cites a recent JAMA article by Tricoci showing that nearly half of the recommendations in treatment guidelines are not based on clinical trials, but rather, are based on no more than the expert opinion of those on the panel. This leads to the rather obvious conclusion that evidence based medicine is largely bankrupt. Only 11% of recommendations for heart disease were based on multiple randomized trials.
A few years back, Tami Duncan was a mother of an autistic son, searching for ways to help her child. As it happened, she also had ill-defined health problems of her own. Like many of us who couldn’t find answers elsewhere, she turned to the internet. Early on, she connected with other moms of autistic kids…discovered many of those kids were testing positive for Lyme disease…found out she and her son both had Lyme …and ended up starting the Lyme-Induced Autism Foundation (LIA). Don’t let the word “autism” turn you away if that isn’t your family’s specific issue. LIA has a wealth of information for anyone dealing with the complexities of chronic illness, especially tick-borne infections.
In response to concerns raised by patient's organizations and physicians about the document submission process–which initially tried to limit submissions to five pages–the IDSA has changed its document submission process. The IDSA is now requesting that submissions be 10 pages or less with an acknowledgment that they will consider all submissions regardless of length. For a submission to be considered by the panel though it must specify what recommendation is being contested. This is because the scope of this panel is simply to consider and weigh the scientific evidence for contested recommendations.
A recent article by Sniderman and Furberg, “Why Guideline Making Requires Reform” is a remarkably…
On February 17, 2009, President Obama signed into law a stimulus program that includes $1.1 billion for comparative effectiveness research. The Partnership to Improve Patient Care, a coalition of patient groups, physicians and pharmaceuticals, warned that the research might be inappropriately used to “limit treatment options for patients.” A health care e-list that I’m on has become an active war zone on this issue. (Full disclosure—I am a combatant.)
The photo to the left is an engorged Ixodes Pacificus, otherwise known as the western black-legged tick, notorious carrier of Lyme disease, sitting on snow one November day in Shingletown, California. The picture was snapped by professional photographer Michelle Mahood, moments after plucking the insect from her dog, who had been frolicking in the snow. It’s Michelle’s answer to all those medical professionals who perpetuate the delusion that ticks are never a problem in winter.
How is it that one week JAMA publishes an article by Sniderman and Furberg, "Why Guidelines Require Reform", on the urgent need to for guideline reform and the next week they publish a piece by Kraemer and Gostin, "Science, Politics and Values", that could have been written by a PR firm for the IDSA, berating the Connecticut Attorney General for trying to accomplish just that?
As a Lyme support group leader, the first piece of advice I give anyone dealing with tick-borne infections is to join at least one on-line support group, such as CaliforniaLyme. The reason? In the topsy-turvy world of Lyme disease, people who have traveled this difficult road before you are a priceless resource.
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