Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The more I think about this new Task Force that has been established in Virginia, the more concern for patients and their doctors I have. Here are some ...
posted
Great--what can we do about it?
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I don't know onbam... I just don't know.
It is hard enough dealing with the IDSA garbage day after day .. and then to have to stop those efforts and deal with this stuff makes all of us not move forward in any way, shape or form.
Poor Dr. Jones... HE should be getting our support and attention and we shouldn't be distracted by having to second guess this situation in order to protect the rest of us from another disaster.
We are dying here and now we have to stop and deal with another potentially bad situation? Sad it is. I don't know why this is happening or what to do onbam.
What I do know is that 5 bills were attempted in Virginia last session, some with the support/involvement of the DC group, some who are now involved with this Task Force- and all of the bills initiated in Virginia failed for many reasons.
You have to figure this is not a good time to suddenly jump into MORE political actions without even educating everyone in advance. But I gotta ask....
WHY didn't they communicate with the national group and/or those who have experience (and success) with this sort of stuff before jumping into another risky situation?
Additionally, 3 bills were attempted in Maryland about the same time as the Virginia bills were done for ... some were done by legislators who have burned the DC's butts, the national group and our butts in the past.
Did the DC folks not learn from the bad experience? Can they not predict another butt burning coming after the first one? This baffles me totally.....
And information was being purposely hidden from the volunteers, patients and groups in Maryland by some of the same people who were working on the failed Virginia bills and who are now supporting this Task Force.
Why do that? Why divide the community? In my opinion, if you have a good idea.. share it and let's all join in and make it happen... but that wasn't done. Why? What's the big secret? Why not get (and welcome) opinions from patients whose lives will be altered by their moves?
Since the Maryland bills were not supported by the majority of LLMD's and patients - practically no one supported them in fact- and because they didn't get passed in this year's session, the Maryland Board of Physicians was made to address doctor protection issues... and the bad part.. they were not a problem.
They had been addressed already and all was working well here. Soooooooooo....
Do I worry about the consequences that could come from this Task Force that will be deciding our future? You bet I do.
Just since the DC group attempted to change things in Maryland this past session- and did so to the negative rather than positive- we've lost one doc who was treating Maryland Lyme patients, 2 more are under attack, one was denied a license and at least one more has been contacted and is backing down ... and those are the ones that I know of ...
And this is all since they worked on Maryland bills, then pushed the Board to revisit the doctor protection issue. Had they left it alone and done work in a field they could actually do some good in (education. prevention).. this wouldn't have happened.
And I can't believe it.... all this has happened THIS year ... after nearly 25 years of NOT having our docs here charged for over diagnosing and over treating.
Because of their involvement the Board here now has this new BAD policy that exposes all of our docs to problems and they are NOW feeling the heat ... and paying dearly for it... physically, emotionally and financially.
It is breaking my heart that our docs and patients are suffering more now than ever before and I can't stop it though I am trying my best to deal with the mess, as are other support group people here.
We have been swamped with requests from sick patients who have lost or are about to have problems since this has happened ... and to my knowledge the DC group and its handful of supporters have not bothered to try to fix the mess they created in Maryland before moving back over to Virginia.
It appears they just let us all down and walked away from it. That scares me. People are sick and they need more help than we can provide on a good day... then this happens?
I am fearful that they have lit another spark in those who are working against us and given them a reason and a platform to mash us up even further.
I don't know onbam... I just don't know.
And it appears they aren't sharing information, consulting others or asking patients for their opinions. It is sad.
Anyhow... maybe we will all learn more tomorrow (actually today) at the meeting. Maybe I will see them there and be able to ask them what they are thinking.
Task Force General Information on Members, Calendar, etc.
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Read my post on the first hearing in General Support. The committee is stacked in OUR favor! I was quite impressed by them at the hearing on Tuesday.
All those I spoke with felt hopeful at the end of the day.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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onbam
Unregistered
posted
Nice! So what's the next step?
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Lymed - I wasn't ignoring you and I did read the post. Have been having server slowness (posting less), frustrating, and other Lyme projects galore keeping me running.
Anyhow... I hope your optimism carries us all through this ordeal and that positive significant changes are made as a result.
I hope I am wrong wrong wrong about this situation!!!!
Onbam...
I guess we all have to wait while they duke it out and see what happens... and hope they know what they are doing and have the power to help and not hurt us again.
It comes down to pray or pay at this point I guess.
posted
I saw Dr. C a few weeks ago. He spoke at this and he is very excited about going this direction. He believes the Governor's advisory board will be better than having legislation bogged down in session after session. He is thrilled it is one of the first times patients are involved on the board. I believe Dr. C from NY is not only on our side but is always looking out for the interest of not only his patients but all patients
Posts: 303 | From green bay, wi | Registered: Mar 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
momof3 said- "I believe Dr. C from NY is not only on our side but is always looking out for the interest of not only his patients but all patients."
He is wonderful, isn't he.
I can't say enough about how good he tries to be to ALL of us, including those in Maryland in the past.
Mom of 3... do you have any updates... you or LymedinVA... for the upcoming Task Force hearing this Friday in Richmond?
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