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We’re Not Gonna Take It: Fighting for Lyme Patient Advocacy

April 27, 2019

We’re Not Gonna Take It: Fighting for Lyme Patient AdvocacyWhen I was composing this week’s article, eighties rock group, Twisted Sister’s, “We’re Not Gonna Take It” came to mind. Allow me to share some lyrics and you’ll see the connection:

We’re not gonna take it
No, we ain’t gonna take it
We’re not gonna take it anymore
We’ve got the right to choose it
There ain’t no way we’ll lose it
This is our life, this is our song
We’ll fight the powers that be just
Don’t pick our destiny ’cause
You don’t know us, you don’t belong
We’re not gonna take it
No, we ain’t gonna take it
We’re not gonna take it anymore

Journalist Mary Beth Pfeiffer first reported back in 2017, that for nearly a generation, a small group of physician-researchers has directed how Lyme disease is diagnosed and treated in the United States, Europe and, as the disease spreads, Canada and Australia too. As a result, US insurance companies routinely refuse to pay for antibiotic treatments longer than 28 days. Doctors have been punished for prescribing them. Patients have been told their lingering problems are psychological or they have other sickness.

Lyme Disease Care
A lawsuit filed in Texas asserted that the design and implementation of Lyme disease care, as outlined in the treatment guidelines of the Infectious Diseases Society of America (IDSA), is rooted in corruption. It asserts that key architects of Lyme policy, naming seven physician-researchers, took money from and worked with insurers to develop guidelines that allowed claims to be denied.

That suit, Torrey v. Infectious Disease Society of America et al, just advanced last month based on a judge’s decision that there was adequate evidence to proceed. Finally, a federal lawsuit that just may validate the pain of thousands of Lyme disease patients and the flaws in prevailing tests and treatments. Pfeiffer reported in February 2019 that, “the lawsuit’s progress is a big development in the decades-old struggle of patients whose post-treatment conditions involving myriad neurological, cognitive, musculoskeletal, and cardiac symptoms have long been misdiagnosed and minimized. Patients have hence had to seek out-of-pocket treatment from physicians who risk their licenses providing it. The suit is a serious challenge to the Lyme status quo.” [You can read the lawsuit in full here:]

Patient Advocacy for Lyme
We as patients should not have to defend ourselves against the verbal attacks and unprofessional behaviors we’ve experienced in medical offices. We shouldn’t have to fight with our insurance companies to get the treatment that we so desperately need covered. The alternative is not to receive treatment and to remain sick, lapsing into debilitative conditions.

This is our life and we have the right to choose what kind of medical provider we want to see and how we want to be treated. Many other medical conditions allow this without hesitation. We have already lost patient lives to this disease due to lack of proper diagnosis and treatment. We have lost jobs, marriages and have been financially ruined all because we can not get the proper treatment that we so desperately deserve.

New IDSA Guidelines
Now, when the IDSA published their guidelines in 2006, there was a footnote at the bottom that read, “These guidelines were developed and issued on behalf of the Infectious Diseases Society of America. It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment with respect to particular patients or special clinical situations. The Infectious Diseases Society of America considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient’s individual circumstances.”

In September 2015, National Guideline Clearinghouse (NGC), a federal database that provides treatment information to healthcare professional and insurance companies, added a second set of guidelines submitted by International Lyme and Associated Diseases Society (ILADS). These guidelines had passed the same rigorous grading system that the IDSA guidelines had originally undergone; however, because the IDSA failed to update their guidelines upon numerous requests, they were removed from the database in Feb 2016. Ironically, in April 2018, the NGC announced that they were shutting down the database due to lack of funding and effective July 16, 2018, closed down access to their site.

So, if adherence is VOLUNTARY with the ultimate determination to be made by the physician in light of each individual circumstance, then why in 2017, did I and other advocates here in Maine have to fight to get a bill passed into law [LD422] just to protect our Maine doctors who were doing just that ~ using their knowledge and experience to individualize their patient’s treatment based on each set of circumstances.

Kenny Rogers may have sung, “You have to know when to hold them, know when to fold them, know when to walk away and know when to run,” but we are not folding and we’re not gonna take it. Our cards are on the table and that is a very powerful position to have.

Paula Jackson Jones is the President of the MLDSE, the Co-Chair of the Access to Care Services and Patient Support subcommittee of the Federal HHS Tick-borne Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at: and visit her website:

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