LYMEPOLICYWONK: Bogus Grassroots Groups – Who’s Who and What’s What with the American Lyme Disease Foundation (ALDF)
It’s easy to get confused. You have the “Lyme Disease Foundation” (LDF), and you have the “American Lyme Disease Foundation” (ALDF). They both sound like patient advocacy organizations, but they are not. Welcome to the world of astroturf organizations—false grass roots organizations where names are intended to sound alike and offer no hint of special interests behind them. Until its recent demise, the LDF was a patient organization that was founded in 1988. And, the ALDF? Well, the ALDF was founded in 1994. It is a stealth front group for the Infectious Diseases Society of America (IDSA). Stealth front groups are seemingly independent third-party organization designed to deceive audiences as to the sponsor’s actual intentions.
More precisely, the ALDF is a proxy for the IDSA Lyme guidelines panel. Four of its 7 board members, sat of the IDSA Lyme guidelines panel (Drs. Shapiro, Wormser, Krause, and Fish). Dr. Wormser, of course, chaired that panel. The other 3 members? Well, they are not patients, they’re not doctors and they’re not researchers. One is a business consultant, one is with an executive search firm, and the last does investment research.
The ALDF is now headed by Dr. Phil Baker, who, until he retired from the NIH ran the Lyme clinical trials. During his tenure, one trial, the Klempner trial (which found antibiotics ineffective in treating chronic Lyme) was rushed to publication, while the publication of a companion trial on monkeys (which found persistence notwithstanding treatment) was delayed for 10 years. Actually, the second trial was not published until after Dr. Baker had left the premises and retired. Meanwhile, we are told Dr. Baker walked the halls of congress (and, apparently still does) saying there was no need for further research on Lyme, that the science was a closed book, that there was no persistence, and that there was no need to treat patients further. It’s not surprising then that when he left government, his particular revolving door led him to an IDSA advocacy organization. I’ve been told he now lobbies on behalf of the ALDF and IDSA.
What does the ALDF recommend as resources for patients? The IDSA guidelines first and foremost. Then, of course, the two IDSA journals, Clinical Infectious Diseases (CID) and the Journal of Infectious Diseases. One of its journals, CID, in turn, recommends the ALDF saying: “The best private organization-based site that can be recommended to patients for education on Lyme disease is that of the American Lyme Disease Foundation.” The second recommendation comes from Dr. Feder, an IDSA pediatrician, who wrote an “academic” article stating that all websites that disagreed with the IDSA provided “incorrect information”, but the ALDF provides “correct information”. Specifically, the article states: “Of eight websites with “Lyme” in the domain name, only the American Lyme Disease Foundation provides accurate information.”
The reason why is easy. The websites that disagreed with the IDSA represent the interests of patients. And, the single website that agreed with the IDSA represented the interests of the IDSA, period. The good work this non-profit funds? IDSA dogma, like the recent book edited by IDSA guidelines author Dr. Halperin, with the bulk of chapters authored by other IDSA panel members. The ALDF is not a grass-root patient advocacy organization, it’s astroturf. Keep off the grass.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org, formerly CALDA. Contact her at firstname.lastname@example.org.
- April 1, 2013 at 12:52 pm
It is going to take more people than we have or a boatload of money for us to overcome these groups. I sit with my fingers crossed.
- April 17, 2013 at 6:32 pm
Keep off all grass! Excellent Blog entry. It is easy to become confused, especially if you have Lyme and Cos. Thank goodness for all the goodness that is out there, docs, policy wonks, Lyme Warriors, Caregivers, scientists…who have made it so I can rejoin the human race. I don’t want to race though, I want all people to not have to go through what have have in the last 25 years, 22 undiagnosed, as a Lymie and Bab, and Bart Warrior.
Please keep hammering at them! Bravo!
- May 12, 2016 at 11:59 am
It is all very confusing. I know people who have gone through the antibiotic treatments and have gotten their lives back. When you say, “supports patients”, what does that mean. Is this group in support of the doctors who are treating with extended high dose antibiotics, or not? How many patients have been told they don’t need treatment when they do? The FDA and the CDC are not helping find answers – they are just slamming doors on insurance support.
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