LYMEPOLICYWONK: IDSA Guidelines Survey
Raise your voice with ours–and let’s be heard as a community! The IDSA guideline revision process is very important to patients. The guidelines panel is required to consider outcomes that are important to Lyme patients. But it has excluded them. This survey is your opportunity to tell the panel what outcomes are important to you.
We will present these in our formal comment submission to the IDSA on April 9th and to help promote patient interests in Lyme disease legislation and healthcare policymaking. Today patients struggle for access to the care needed to be well again. The Institute of Medicine requires that those affect be involved in the process. Yet, the IDSA has excluded chronic Lyme patients from its panel. Instead, they have selected a patient who does not have Lyme, has no knowledge of Lyme–someone who is not known to the Lyme community and who is not empowered by this community to represent our interests.
Our last survey on proposed FDA regulations of Lyme disease tests drew over 8,000 responses within a few months. We expect to draw thousands for this survey by April 9th when we submit our formal contents and continue collecting responses even beyond that date to provide some real information on what patients think is important in Lyme diagnosis and treatment. Raise your voice with ours–and let’s be heard as a community! Take the IDSA Survey Now. 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 lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk
I believe this will help many patients intimidated by the process. Accessibility is one of my biggest concerns with the comment period, given how it is structured. Is participation in this survey intended to replace individual comments, or welcome/appropriate if intended to be additional to them? I’m also wondering about additional the option to add question suggestions via the survey (subject to the answer to the question above). As a biologist, the rigour of your surveys always does my heart good!
Angela, we recommend that people take the survey first. It should take no more than 10 minutes. Then, if you’re up for it, give comments on the IDSA website. Both are important.
Thank you!
Millions of US citizens are suffering with Lyme disease and related symptoms while the federal government and the CDC, with IDSA support, continue to do everything in their power to deny the citizens an accurate diagnosis and treatment.
The new guidelines should be designed by a group which includes doctors who treat TBDs (ILADS members), and citizens who have been treated for LYME disease, and should allow treatment to continue until the patient and his doctor are convinced that the symptoms have abated and treatment is no longer necessary.
The testing process should be based, as much as possible, on finding actual bacteria or their toxins, not merely on whether the subject’s immune system is producing the antibodies that the test somewhat arbitrarily decides is the only way to indicate the patient has Lyme disease.
Citizens’ health and comfort should be the primary concern; pain and suffering must be battled by a moral society.
Thank you.
Robert Morgenstern
I had Lyme, Babesiosis, Mycoplasma, Herpes simplex. There needs to be included Ilads researchers and Dr. Garth Nicolson. I was on antibiotics for 9 years. Permission need to give MDs discretion to use antibiotics long term. Get rid of ISDA current protocol for Lyme.
Quest did my first 2 tests. Both Elisa’s positive…yet WB negative. These took 72 hrs or less to preform. Short turn around for decision in such a delicate matter. There was no fact sheet regarding ‘vector’ encounter included to the lab. Where as Igenex has had my blood studying it for three weeks. According to CDC the longer you have had the spirochetes the more apt the buggers will morph and give different shapes and patterns. Specimens must be handled properly, smeared, cultured, dyed accordingly and observed for a set amount of time. Let’s get a set “Standard” for this delicate procedure when the fate of many people is at stake. The diseases associated with vectors is world wide and poses a threat to our children’s children.
Are all these meetings different? The MayDay Project was supposed to meet with the IDSA as well.
The MayDay Project is planning several events in late April & early May. These include protest demonstrations outside the IDSA headquarters. More information about that at their website.
The IDSA itself has started a review process for its Lyme guidelines. According to the Institute of Medicine (which has no actual power in the situation, but gives out advice) the guidelines panel should include a “patient representative” who has experience with the disease. It should also include professionals who hold varying viewpoints on the matter under discussion.
The IDSA says it is following the IOM’s recommendation for the makeup of the panel. Yet the “patient representative” they have chosen personally told me that she has no experience with Lyme disease and knows nothing about it. The IDSA has also excluded anybody from ILADS. The panel also includes researchers from the 2006 panel, who were found to have conflicts-of-interest last time (and presumably still have them).
The IOM also says that the panel should consider “outcomes important to patients.” That’s where our survey comes in. We are asking Lyme patients what outcomes are most important to them. We plan to compile the info and give it to the IDSA, federal and state legislators, the news media, and the public. We aim to hold the IDSA’s feet to the fire.
Check out our other blogs for more information.