Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
NOTE FROM PATIENT-
YOU CAN TUNE IN NOW! IT IS 3:20 AND STILL WAITING - SO GET IT ON.
NOON REPORT- The Public Health Committee just started discussing the Lyme Bill on our CT government channel. Testimony from 2 legislators so far has been just awesome. Both have spouses who suffered chronic Lyme and needed long-term abx.
You can watch this in CT on channel 83 - CT-N.
You can also watch it on the internet through a live stream here:
They had a couple testimonies from legislators when the bill was announced, and also the first selectman from Ridgefield, CT testified (I believe he was formerly in charge of the Ridgefield health department.
The 3 testimonies were all excellent and supportive of the bill and the experience of people with chronic Lyme. Both legislators have husbands whose Lyme was not cured by the IDSA protocols and had to seek out other doctors.
They have since gone on to other bills, but my assumption is that there is more Lyme testimony to come after they get through with all the other bills.
Could be a lonnnnnnnnnng day. People that I know were planning to testify have not yet gone. Also, the IDSA and ALDF were slated to testify against the bill and they haven't gone yet either.
You said above that IDSA and ALDF were going to testify. Did I miss them? Or is this later today, or another date?
Or did they slink out when no one was looking?
Posts: 845 | From Eastern USA | Registered: Jul 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Nomo..
You said..
"Or did they slink out when no one was looking?"
That's my guess. They did the same in Maryland in years past when 200 plus people showed up to support a bill for Lyme.
Actually, I didn't know of them planning to be there. The report above came from another patient that I quickly copied and threw here as fast as I could so folks could hear the proceedings.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Thanks for posting this Tincup. I missed it too.
Let us know more details if you can. I sure hope there is a video on the site tomorrow.
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
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Here is a note I just wrote up after talking to some of the ones who testified.
They were at supper at the time... so I didn't stay on the phone too long.. but their mood was elated and they were pleased with the outcome.
```````````````````````````````````````````````
Brief report on the hearing today (my opinion)-
Maggie Shaw, Karen Forscher, Dr. Cameron, Pat Smith and a number of patients and parents (I choose not to publicize names of patients) testified today.
They waited all day for their turn to speak for three minutes each, after spending many hours preparing for this special event, as well as traveling to be there. They all deserve three thumbs up for their efforts!
No one testified against the bill at the hearing! The legislators asked good questions, which were answered throughly.
More than 90 people (on the right side of this issue- and I am biased) submitted written testimony, which was a huge help! Thank you all for making this effort a success!
A CT doctor's big medical group (didn't catch the name- sorry) also testified FOR the bill, a pleasant surprise. (But I'd keep an eye on them.)
Hearing all the testimony from the groups, I believe all major and many minor points were covered. Good team work!
I just heard from some of the group that were there today, they were already discussing what their next move will be and what still needs to be done.
Again, thanks to everyone who worked on this bill, both out front and behind the scenes.
TC
PS I am still listening to the hearings- it is about 7 PM and they are still going. I am glad our bill has been heard already and our folks have been able to leave.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Is it on so we can see the footage now.. after the fact?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Thank you Tincup for your up date. This hearing has been on my mind through out the day and your posting is appricated along with your time and all the effort you put forth.
I am extremely dumb when it comes to computor operation, but I will figure out how to see the recorded program.
Posts: 108 | From maryland | Registered: Sep 2007
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Tincup
Honored Contributor (10K+ posts)
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posted
I'm dumb too mush man... and thanks for the kind words.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
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Well shoot! I missed it! Will they be posting the video anytime soon??
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Thanks for the info. I will not attempt to find a replay as this was the first thing on my list today.
When looking at the site I saw other meetings that had been taped for showing so hopefully this one is in the making.
Really hope they do so, I am hopeing a hearing comes about here in my home state and some foundation work would be provided.
Posts: 108 | From maryland | Registered: Sep 2007
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posted
Can we dare to hope something might go our way for a change? Afraid to hope only to be crushed again.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
forgive me if i am missing it here, can someone tell me, what was final outcome of hearing? sorry for brain fog today...
Posts: 32 | From east coaster | Registered: Aug 2008
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What has happened in the past with attempts at getting this kind of legislation is that the IDSA and their gang of thieves work behind the scenes to get it shot down, after the cameras and the patients have departed and the hearing is over. This is what to be watching for.
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
up for more input; was going to listen to this tomorrow .... guess i won't since link disappeared..
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I think it is in the 5 hour on demand video dated feb. 6th. Follow the on demand link. http://www.ctn.state.ct.us/ondemand.asp Anyone, is it that one?
Posts: 366 | From Europe | Registered: Nov 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I tried listening to it but could only hear some news stuff.
The oh no Governor kept taking and talking...
So I don't know how much further.. IF it is on there.. that it would be down the line.
Anyone want to hear the Governor yak yak yak and see if you can get past all that?
I don't.
But I did hear a "talking point". Not that SHE listens to CT or any other folks..
But she said CT would hire more people to do "good work" for "good pay". They would be cleaning trails and beaches.
If she is sending people out on the trails...
YOU'D THINK she would do something so when they get Lyme.. they wouldn't become disabled ... because insurance won't pay and ducks won't treat.
IF they consider that.. my bet is she would not have those jobs covered by insurance of any kind .. or minimal at best.
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