posted
Formerly H.R. 2557 which died in 2011-2012 session. I am writing to my representative to support this bill, if enough of us do maybe this one will pass
If approved it requires the appointment of lyme disease experts "representing the broad spectrum of viewpoints" and a number of treating physicians...
... "including at least 1 full-time practicing physician, with relevant experience providing care for individuals with a broad range of acute and chronic tick-borne diseases."
Also stipulates inclusion of at least 2 "tick-borne disease voluntary organizations", and patients among some other things.
Only being recently diagnosed this January, I'm still green to the politics surrounding tick-borne diseases. Some days I feel like I've woken up on the other side of the rabbit hole, and it's not because of the cognitive symptoms I'm having.
But when I read this I felt hopeful, because by stipulating including a diverse range and a full spectrum and etc...
...it is written with implied attention to how a significant set of facts, research, and clinical experience on tick-borne diseases is not being shared with patients and the public by those who should be doing just that very thing.
(One last note... Anyone have insight as to why it was referred to the committee on energy and commerce?)
Posts: 22 | From West Warwick, RI | Registered: Dec 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks for the alert. I don't have time to check but wonder if you know if any of the lyme advocay groups below are supporting this bill or if they have any thoughts on it?
Sometimes bills are written to hurt us in some twist of the words. I hope these groups have had time to study it, and every word that is tagged on that we may not see.
posted
lymedisease.org supported this bill when it was put forth in the 2011-2012 session as HR 2557, saying "Learn what the Lyme disease bill is about, then share the information with your federal legislators and encourage them to get involved!"
As far as I can find, thier site has not updated since 2557 died in session, when I searched their side for HR 610 nothing hit.
The bill is up for 2012-2013 re-titled HR 610. Their post in support of 2557 is how I looked into the bill:
Reading HR 2557 quickly, as HR 610 it has not changed from the orignal bill HR 2557. To say that with certainty I'd have to compare the two with a fine toothed comb which I can't do just now. Maybe someone can chime in
I will check the other groups later this week
Posts: 22 | From West Warwick, RI | Registered: Dec 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks a bunch for all that leg work and specific links.
I'm especially glad to see the Lyme Disease.org one about SSA - I had wondered what their take is on that when I stumbled on it from somewhere else. I know that if Lyme Disease.org supports (or rejects) something they really know all the ins and outs of it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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