LYMEPOLICYWONK: IOM Conference calls: A Phone to Nowhere?
I have to say, I have not heard encouraging things about the IOM process. Most folks think the IDSA simply plucked a friendly forum to reaffirm its beleaguered Lyme guidelines and the tainted Lyme review panel process. The big question is: Does this process have any substance or is it just a matter of going through the motions? Is anybody listening on these "listening" phone calls? Is the IOM offering to listen to anyone who cares?
When I got my notice about the IOM listening call for Californians , I had long before made plans to be out of the country. I arranged for someone else (Phyllis Mervine, CALDA’s President) to read my allotted 3 minute speech. I checked in afterward and was surprised to hear that of the 6 panel members, only one was on for the entire call. Two others were only on for a portion of the call.
See, it doesn’t seem like that big a deal to say, “hey, one in-person meeting and then phone conferences”. But, the thing is, all the panel members were there for the in person meeting in Washington D.C. I’m thinking that is because it was so visible. If only 3 of the members had attended, imagine the outcry. If only one was there for the entire meeting, wouldn’t people be saying “hey, we may be stupid, but we’re not idiots”?
Then, today, someone told me about the Native Americans from Oklahoma conference call. I had seen the notice and thought what a tremendous bureaucratic waste. Apparently, there were no Native Americans from Oklahoma on the call. Poor organizational skills by the IOM or mindless process following not intended to achieve a result? ?
One person associated with a health department in AZ complained about RMSF cases and the lack of funding to control feral dogs.
Someone had the audacity to ask why they held the conference call when this was clearly not a population in need given that reported cases of Lyme disease in Oklahoma for the past 4 years was 3 cases and given, of course, that Native Americans would be a subset of that. The response apparently was something to the effect that the panel had done a number of these types of hearings before and knew what it was doing. Oh, yeah? So much for listening.
You can follow additional comments on Lyme policy at www.lymepolicywonk.org. You can contact Lorraine Johnson lbjohnson@lymedisease.org.
hi lorraine,
i was the 1st speaker in that phone call of 5 people who spoke.
i wasn't aware it was to be for native american indians only until the phone call got going! boy, was i surprised.
i'm not NA so it didn't pertain to me but after picking myself off the floor from NOT knowing i'd be the first one to speak, i read them my brief comments.
there was 1 other panel member present since he asked a question of the dr. treating NA for rmsf.
i don't know if there were any more since NO one introduced themselves except the coordinator of the meeting, and the chair lonnie king PLUS the 5 of us who spoke gave our names/states.
the biggest shock came to me when i forwarded them my typed speech notes. i got a reply saying if i wanted my comments part of the "official" meeting notes, to send them as a reply to this.
it would show my full name, state, and EMAIL ADDRESS used to send this per PUBLIC policy rules!
i sent them my reply and stressed i did NOT want my email shown on this; i had no problem with my name/state, but i do on my email address!
lorraine, keep these good articles coming.
did anyone from CALDA TAPE the other 4-5 conference calls set up for specific states?
please reply if you did and if it will be available to listen to somehow.
thanks to all who read this.
bettyg,
iowa lyme activist
mdjunciton.com lyme board group leader 🙂
I also listened to the session that was supposed to be for Native Americans from Oklahoma, and I thought, well, this probably means a listening session for Native Americans from anywhere.
But there weren't any, and that's the question we raised, as in what was the outreach and could it still be done.
Answer: they probably don't have a lot of computer access.
I think I have another answer: they probably don't even know about Lyme disease and co-infections.
The reason I say that is, I was talking with the head of a major American Indian film festival recently, and within 20 minutes of my discussing Lyme disease, two women self-identified with the symptoms I was describing, and they had never heard of Lyme disease.
There are probably a lot of Native Americans who have Lyme/co-infections who are clueless about what's going on, much like what so many of us have gone through.
Dr Mark Traeger, with the Public Health Service in Arizona, gave a pretty thorough report about RMSF cases on two reservations in Arizona, and also for Native Americans throughout the country. It's been fatal for many, including children. He wants a more rapid confirmation test for it.
There was only one person present representing the IOM panel, Lonnie King.
What bothers me, and Betty spoke about this too – all listening testimony and written input is being given to an "anonymous expert" committee for review.
There is no transparency or accountability in an anonymous committee review.
I think we all deserve to know who the evaluators are. A scientific evaluation of Lyme disease and co-infections should require transparent process and discussion.
Here is a list of the committee members:
http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49216
Seems very unprofessional and somewhat insulting to those giving testimony that the 'listeners' would not be identified. Doesn't inspire confidence in the process.