TOUCHED BY LYME: When loved ones won't heed our hard-earned advice
What should you do when you think a loved one might have Lyme disease, but they just don't want to hear about it?
Author | LymeDisease.org
What should you do when you think a loved one might have Lyme disease, but they just don't want to hear about it?
As Dave Martz lay dying, an idea serpentined around his mind and would not loosen its grip: Despite the absolute diagnosis and the insistence of the doctors, including a world expert, that he was dying of ALS, despite his own vow to face things head-on and reject the lure of denial, Martz couldn’t shake the notion that possibly, just maybe, he actually had Lyme disease. (from “Cure Unknown: Inside the Lyme Epidemic” by Pamela Weintraub.)
I attended California’s Lyme Disease Advisory Committee (LDAC) meeting on Thursday. This is a group which advises the state’s health department on matters pertaining to Lyme and other tick-borne infections. The panel receives updates on what the California Department of Public Health (CDPH) is doing with regard to Lyme and discusses future projects. There was lots of information to process.
I have gotten a lot of reports from patients that Medco is refusing to dispense antibiotics because of the IDSA guidelines. At $51 Billion, let me repeat that $51 BILLION, dollar in revenue, Medco is the nation’s largest drug dispensing company. And, just for the record, they are over-riding the treatment recommendation of the treating physician and replacing it with, oh yeah, the IDSA “expert opinions” on treatment. This isn’t evidence based medicine, this is “eminence based medicine.” Their mission is to help “clients control the cost and enhance the quality” of prescription benefits. Looks like the IDSA is their friend. Complaints about Medco using these tactics have been becoming more frequent suggesting that this is not an isolated case and may be an across the board policy? If so, its reliance on IDSA guidelines to deny treatment across the board will have a serious adverse impact on patient lives.
Another run away Prius hit the news today. I have one (first year). I share these concerns. Is this car safe? Should I really be driving it? Have they recalled my model? It made me think about the IDSA Lyme guidelines a bit. Why haven’t they recalled these guidelines? They actually harm patients. The real risk to patients is not that they will have the risk of a reaction to their antibiotics, it is that they will be treated under these guidelines. That they will remain ill. That the diagnosis will be missed. That the treatment when it comes will be too little, too late. That the medical society responsible for the high, high treatment failure rates will do nothing more than circle the wagons around their self interests. That patients matter less than vaccine and diagnostic test patents and preserving the reputation of a medical society that does not even have patients on the agenda.
I’ve been getting a lot of email lately about the IDSA. Most of it is about the voting issues, but some of it is about other things they have done to “game the system”. Here’s a list of the top 10 questions patient ask me about the IDSA that begin with the word “why”? As Mark Twain says, “few things are harder to put up with than the annoyance of a good example”—or in this case, ten good examples of why the Lyme community should question the advice to “trust us, we’re the experts” when it comes to the IDSA. Let me know if you think there are any “whys” I left off the list.
One of the problems with the IDSA reviewing its own guidelines is that it is not an independent process. The IDSA selected the panel, paid the ethicist, and sets the ground rules. And, now we have the IDSA manipulating the voting process to achieve a goal–protection of the IDSA professional reputation–that conflicts with the goal of providing quality patient care. Think about it. The vote on the lab test requirement for diagnosis was 4 to 4. 4 to 4 means there was NO consensus. Yet the IDSA chalked this up as a victory on its side by ignoring the two step vote requirement and flipping the supermajority vote in its favor. The IDSA is essentially saying 4 to 4 means the IDSA wins on this point. To the fox guarding the chicken coop, this makes perfect sense. Let me drill down into the detail so that what the IDSA did here is clear.
This is a chart of the relative importance of different stakeholders to big Pharma. (Click chart to enlarge.)
I was really struck by how little weight patients were given (9%) compared to specialists (47%) and compared to key opinion leaders (21%).
So if you take specialists and add key opinion leaders to that, 68% of drug companies thought that key opinion leader who are specialists would have the
most influence on their company over the next 2 years. Wow! And, look at the lowly role of the general practitioner
My heart goes out to you, Coach Brown. I know how much you are suffering and I know how much your family is suffering…..But you know what? You don
"Jorgensen’s personal story is (sadly) not uncommon in the Lyme world. But she uses it to demonstrate a larger point. This lady went into her Lyme journey with a Ph.D. in economics, trained to unravel bureaucratic red tape and the ins and outs of labor-related issues like health care benefits."
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