CALDA CEO Lorraine Johnson is now in Washington DC, prepared to testify at Thursday’s historic hearing before the IDSA Lyme guidelines panel. Included in her report will be results from some 3500 surveys submitted by Lyme patients in recent weeks.
How is it possible for the IDSA to have a public guidelines review on Lyme Disease hearing date set for April 27th when it hasn’t notified speakers that they will be speaking at the hearing? When it hasn’t even selected speakers? When it hasn’t even posted applications for speakers on its website? When it hasn’t reserved a room for the event? You’d think this group had never held a conference before—but wait— it holds annual conferences! So this organization KNOWS how to prepare for and hold a big event that will have a number of speakers; it knows how to reserve a room; and even how to select speakers and give them time to prepare. In fact, it has already worked out all of these details for its own annual meeting in October, which is more than 6 months away. They have a list of speakers, the assigned topics and reserved facilities— the whole nine yards.
When I first became involved with Lyme disease, I remember wondering where the pharmaceutical interest was in the disease. Most of your double blind controlled trials are funded by the pharmaceutical industry. This means that if your disease is not on their radar, you’re going to have a long hard slog getting funding for studies on the efficacy of different treatments. Diseases that are on the agenda of big Pharma have a distinct advantage in evidence based medicine because studies, typically large scale studies, have been funded by someone with a dog in the hunt. In other diseases, the dog in the hunt may be overzealous, promoting treatments and selling drugs with little proof of effectively. But when a disease is neglected by big Pharma, the opposite occurs. Research simply isn’t done. And, that becomes a social justice issue when insurers and specialty societies deny patients access to care because research studies haven’t been funded and aren’t likely to be funded. Drugs are expensive to develop and research is expensive to conduct. Recently, GlobalDate releases a report that explains why Lyme disease is neglected and is likely to remain neglected by big Pharma.
In the final days waiting for Governor Cuomo to sign the Lyme bill in New York that would ensure Lyme patients access to diagnosis and care, Slate magazine ran what can only be called a Lyme bashing piece designed to kill the legislation. LymeDisease.org responded with this letter to the editor.
If you haven't read the article by attorneys Elliott Pollack and Christine Collyer in the Connecticut Law Tribune, "Attorney general
challenges controversial Lyme disease guidelines", I suggest you check it out. Those familiar with the Jones case in Connecticut will recognize their names. Early on in the case, I had the pleasure of working with these attorneys and have appreciated the high level of competency and professionalism as well as their dogged pursuit of justice for Dr. Jones. Connecticut is ground zero for Lyme disease–with the Jones case, the Connecticut Attorney General antitrust investigation against IDSA, and the pending state legislation that would provide protection for treating physicians.
Patient representation on the revised IDSA guideline panel: Is it real or token? The IDSA…
If you don't read medical journals or medical ethics journals, you may have missed a comment made by Dr. Ann Gershon in the Southern Medical Journal. She is responding to an article by Susan Ronn that was published together with an editorial by me and Dr. Stricker. It took me a couple of times reading this, but I think she made a promise based on a dare. She says: "If and when there is credible evidence of the existence of chronic Lyme disease and of the benefits of long-term antibiotic therapy to treat it, IDSA WILL NOT HESITATE TO CHANGE ITS GUIDELINES TO REFLECT THIS EVIDENCE."
