We all know how important this is. Not all patients know all the pieces or felt ready or physically or mentally able to respond directly. I’ve had firm plans to submit my own comments, as well as question suggestions (based on IDSA President Calderwood’s statements following his meeting with The MayDay Project), and to respond to Lymedisease.org’s survey (with results to be included in their comments).
To catch up on the process and associated resources, my past posts HERE include links to all related materials I’m aware of and will be mentioning here, as well as additional background information. I may post a recap later today.
I still intend to do all three (comment, compile questions, and fill out LDO’s survey—and perhaps also write to political representatives), but I had a much grander view of the scale of my comments. Though none of us can get to all of this.
Comments and Timing
With the best of intentions and commendable dedication, some patients commented right away, without knowing fully what to comment on or how to structure responses. Some waited for further information and became increasingly overwhelmed, and or caught up in other Lyme community needs this month. As eluded to earlier, the IDSA’s President made further statements after his March 20 meeting with Mayday Project—anyone commenting prior to then did not have the opportunity to add questions suggestions (read more here and here).
Survey and Bigger Picture
Some patients responded to Lymedisease.org’s survey request. This is fantastic, as the more responses they receive the more validity each comment has, both in terms of support, but also statistically (making some of the answers better able to be inferred from).
However, based on my desire for everyone to have at least an awareness of the bigger picture, it was best if they saw the survey in one of it’s original articles, in the context of the related series of instructional articles regarding how to comment (whether or not they were able to comment individually). Many patients saw it as a link alone or in it’s short post version and quickly answered.
This is still a good thing overall, but these folks may not have entirely understood that they could also submit their own comments and may not have been aware of the significance of the comment period or the Mayday Project meeting.
My Intended Approach
I’m a biologist, and a federal writer editor. It may not be apparent in some of my posts (I have Lyme, which is why I am once again on a very extended sabbatical to recover). I intended to approach this systematically, and found it conceivable that I could comment on the whole thing. I have spent a great deal of time fighting for IDSA to revise the guidelines, and we may not have another chance or another chance in coming years, like this to get our comments ‘on record’.
Framework and Expectations ~ ‘Public’ Process
The gravity of it and the structure of it, though, were so overwhelming that it was hard to even begin. I have spent years working within public planning processes, which include a very specific framework. So it is not due to a lack of intelligence or commitment that I find this overwhelming.
Our frameworks within agencies are more complicated in terms of their actual function, with processes and collaborative expectations very firmly required and complicated. But based on what a public comment period means, the availability of the process to the public is much, much different.
This process is not similarly accessible or clear. Additionally, for someone like me, coming from collaborative processes, clear planning frameworks, transparency, pulbic policy, and hard sciences, it is extremely disconcerting that there are no regulatory ‘teeth’ holding this organization accountable for it’s process or outcome. There are medical guideline creation standards, but as far as I can find, these essentially hold the weight of a general best practices expectation without ramifications or accountability.
Inaccessibility and Time Constraints
In addition to the inaccessibility or the process, feeling overwhelmed, and this being an extremely busy month in the Lyme community, there were a large number of good questions from people similarly overwhelmed but even more cognitively impaired. People needed help, even just keeping track of the links from IDSA and from advocacy groups, putting it in context and remembering the pieces. I spent more time sharing and explaining than compiling my own documents, yet still managed to forget who ore where I offered my assistance to in the first days the comment period was announced.
That distribution of time was in many ways acceptable. Sharing those resources as they became available was important and multiple efforts I helped with were monumental and equally important. As is the Lyme challenge, and even more so were the legislative efforts going on in other states.
Emotions….anger, hope, frustration…
I’ve tried to stay hopeful enough to remain fully motivated to complete my comments. This has been difficult, given the way the IDSA has conducted their reviews in the past, and the guidelines they wrote and continue to support. Not to mention the degree of personal (physical, emotional, economic, career) damage the guidelines have done to me personally. Let alone millions of other patients.
I’m putting this in writing for a number of reasons. One of which is to turn these frustrations into an action plan of sorts, to make the best use of the remaining days of the comment period (which ends April 9, three days from now).
To Address Today, Moving Forward
I’m flushing out the following questions and concerns as I work on my comments today.
Why is the process structured this way? How is it best addressed?
What parts of the guidelines MOST limited my diagnosis and care? What other things were limiting that the guidelines failed to address or indirectly influenced?
What are the most important things to focus on, personally?
Tentatively: Geography, Ecology, and Process
If I write to political representatives, what do I want them to know?
- Science is incomplete
- Guidelines are inadequate
- Geographical assumptions are wrong and
- costing our region millions of dollars
- limiting diagnosis and care
- keeping doctors from becoming educated
- costing federal dollars to patients in processes such as disability and worker’s comp
- causing unnecessary disability
- ‘public comment period’ implies planning structure that isn’t present
- history of IDSA & guidelines
- role of CDC—confusing, misleading process
What to I want them to do?
- Watch this issues
- Offer insight into process
- Ask questions about the process
- Ask questions about the science
- Look at steps being taken by other states, consider why they are necessary
Who to write to?
State reps & senators, Governor….
Heads of agencies? What should they be asking?