LYMEPOLICYWONK: National Guidelines Clearinghouse–Listen Up
We are waiting for the final resolution of the National Guidelines Clearinghouse (NGC) determination regarding whether they will pull the outdated IDSA guidelines from their website. Members of both the House of Representatives and the Senate have called for their removal. If you haven’t signed our petition calling for this, please do. We have over 19,000 signatures on it so far. Our understanding is that the IDSA listing on the NGC is now being reviewed by higher ups on the organizational chart, namely the Agency for Healthcare Research and Quality (AHRQ)). Meanwhile, the NGC is calling for public comments on their guideline inclusion policy. We sent off our list today. Here’s the long and short of it.
For Lyme patients, a key issue is how guidelines that conflict should be managed. We believe the list below, is a good start:
- Groups that are directly impacted by guideline recommendations (patients and primary care physicians) should be part of the process and have a meaningful seat at the table.
- Large specialty groups should change the membership of the guidelines panel from one revision to the next.
- Guidelines should be required to be revised within 5 years of their issue date
- Guideline reports should not be issued unanimously unless all members fully agree to all sections. Alternate interpretations and viewpoints should be recorded and issued along with the majority opinions.
- When conflicting guidelines exist, this should be acknowledged in the guidelines, attempts to reconcile the conflicting guidelines should be documented together with the rationale for the recommendation.
- All guidelines should recommend that physicians advise patients, as part of an informed consent process, when there are divergent viewpoints and treatment options.
- Guidelines should identify gaps in the evidence base that future research should address.
- In the absence of a strong evidence base, guidelines should not unduly constrain the exercise of clinical discretion by physicians or the exercise of evidence-based informed autonomous consent by patients.
We believe that patient participation in guideline development is essential to ensure that guidelines address the issues that are important to patients and are directed toward improving the patient’s quality of life.
You can sign the petition here.
The background for the NGC petition is in a prior blog post.
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 lbjohnson@lymedisease.org.
I have had lyme on and of for years, started in the late 80 s, was diagnosed stage 3 in the early 90 s, had exstensive iv antibiotic treatment intervenesly and oraly , It didnt work. took years for me to get it under control using herbal and holistic medicine. Had had relapses and also been re bitten, tested and came up neg. even though I know the symtoms of lymes. Had a Dr. tell me that most if not all lymes pation s were suffering from mental illness and that they chose lymes desease becouse it dosnt have a stigma atatched to it.
It s time to get a better test and treatment for this desease!
I was bitten in 6th grade, had the bulls eye rash and became very ill for a few days. My parents never took me to get treatment. Now 35, I have been diagnosed with many different conditions ie. fibromyalgia, add, processing d/o, benign tumors just to name a few. Finally got a doctor to let me test through igenex and the Igm came back positive for lyme. My doctor said it was probaly a false postive, even knowing my history. Lyme doctors do not take insurance and I cant afford to go get treated. I have began searching for reputable pharmacies overseas to obtian the meds needed to treat my condition without a perscription. Standards need to change so insurances will be forced to recognize chronic lyme and be required to cover treatment under their policy, therby giving the affected public what the are entitled to…proper medical care for chronic condtions.
I fell extremely ill in 2008. I went from doctor to doctor trying to find out what was wrong with me. I was misdiagnosed with Sarcoidosis, Myasthenia Gravis, Fibromyalgia, and checked repeatedly for MS, Lupus, and many other autoimmune diseases. I was mistreated by many uneducated doctors who told me to not be coming to them crying about it and another told me I was just depressed and needed to see a psychiatrist. I had many tests done and several came back abnormal but was told it wasn’t anything because they were “barely abnormal”… Then way have ranges? When I was FINALLY tested and it came back positive for Lyme, and I tell other doctors I have it, they tell me I can’t because I live in Tennessee.