LYMEPOLICYWONK: IDSA says revision of Lyme disease guidelines expected to take 2-5 Years
Yesterday, IDSA spokesperson Diane Olson informed LymeDisease.org that they hope to complete the new guideline development process within 2-5 years. It takes time to actually review evidence using the GRADE process—which is now required by the Institute of Medicine (IOM). When I sat on the guidelines panel for the International Lyme and Associated Diseases Society (ILADS), we took roughly three years to evaluate and analyze the evidence.
Currently, the ILADS guidelines are the only Lyme disease guidelines listed on the National Guidelines Clearinghouse, which requires that guidelines comply with the IOM standards for creating trustworthy guidelines. (The NGC is a federal government database that lists guidelines meeting evidentiary and other requirements established by the IOM.) The IDSA guidelines were removed from the NGC because they were outdated and failed to meet the IOM standards for trustworthiness.
So far it all sounds like good news, right? Yes, but. . . The IDSA guidelines are still posted on the website of the Centers of Disease Control and Prevention (CDC) and the ILADS guidelines are not. Is it even possible that the CDC will continue to list guidelines that are outdated and do not meet the threshold evidentiary standards determined by the IOM to be essential to creating trustworthy guidelines? The sad fact is that 38 out of the 71 recommendations in the IDSA guidelines depend on the weakest Level III evidence, namely “expert opinion.”
The IDSA now says it will farm out the evidence assessment to Tufts Medical Center because the burden of performing the assessment in-house would be too large. Allen Steere, who led the effort to develop the failed Lymerix vaccine, previously served as chief of the rheumatology and immunology department at the Tufts School of Medicine. His close ties with previous colleagues at Tufts raises questions of potential bias in the assessment.
It is understandable that the IDSA wants to take its time developing the guidelines—rigorous process takes a while. However, the CDC should remove the outdated guidelines from its website immediately and stop advising doctors to use them. The IDSA guidelines are almost 10 years old and it will be another 2-5 years before new ones are developed. Patients can’t wait, and these guidelines are deeply flawed.
This blog is part of a series analyzing the IDSA review process and issues critical to patients. Next up: The mystery of the top-secret “patient representatives.”
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at email@example.com. On Twitter, follow her @lymepolicywonk. If you have not signed up for our patient centered big data project, MyLymeData, please register now.
- April 6, 2016 at 5:54 pm
I know those things take time, but there’s no guarantee that even after 2-5 years they’ll change the guidelines.
The IDSA is a private organization. They can do what they want to, but the CDC is the federal government. They’re supposed to do what’s right for the people. The CDC could change their guidelines if they wanted to, bring them in line with the NGC.
Wonder if there’s any way the CDC can be urged to change. Beyond setting their budget, does the President and Congress have any other influence on the CDC? Anybody know how this all works?
- April 6, 2016 at 7:13 pm
I cannot immagine another 2 to 5 years of this. Will I even survive? I am in a wheelchair now and five years put me in one. What will be of me in five more years? I am so afraid of this. And to add to this sad news we cannot trust the IDSA so I would not be suprised if the new guidelines were no better than the old ones, or do not cover the gammot of long term sufferes of lyme who require nursing home level care like myself. I hope we can organise ourselves and fight hard Lymies. I cannot wait this long.
- April 6, 2016 at 8:40 pm
Thanks so much for your tireless work, main stream is trying everything in their power to safe face about how they mishandled Chronic Lyme.. I hope they can find a compromise somehow even if they use different language, i don’t really care as long as our precious Lyme doctors can treat us as they see fit..
- April 7, 2016 at 8:10 am
The IDSA Lyme Guidelines posted on the CDC website must be removed immediately! Call to action!!
- April 12, 2016 at 4:25 am
Exactly what I was hinting at. How do we get them removed? People are being denied treatment. People are being discriminated against simply because of what microbes they have in their body. It’s a human rights and a civil rights issue. Protest the CDC? Lawsuits? A”million Lymie march” on Washington?
Sarah, I’m all for private research for new treatments and such but we don’t need any more studies to prove chronic Lyme exists. There’s already plenty of evidence, it’s just being ignored.
What the government does matters, especially for access. Some states strictly follow the CDC guidelines for testing and treatment, leaving sick people out. If you are on Medicaid or Medicare, it matters for coverage. Many private insurance companies follow what the government does.
- April 7, 2016 at 9:14 am
We are only going to be saved by private donations funding private research. Don’t wait around for the government to help us because it’s not going to happen.
- April 10, 2016 at 3:53 pm
Interesting. I would have thought it would take 2-5 minutes to photocopy the previous guidelines and just change the date on it, and submit that. That’s likely what we can expect anyway.
- April 22, 2016 at 11:15 am
Yes, I very much doubt they’ll change anything significantly. They claim current diagnosis and treatment works fine. Why would they change?
- April 13, 2016 at 10:54 pm
This could be a death sentence to many of us! Hope for our children and the world! GOD SPEED!
We invite you to comment on our Facebook page.
Visit LymeDisease.org Facebook Page