tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Lyme Hearing - Time Change: The Lyme Hearing, in NH, has been moved to 2:00PM on Thursday, January 28th (it was the same day but at 10:00AM). This will be in the Legislative Office Building (Behind the Capital Building) Room 205.
We need a show of force to illustrate how many people this disease has effected. PLEASE ATTEND if you can and bring as many family members, neighbors and friends as you can find. We need numbers.
We need a head count. If you think you can attend please RSVP to [email protected] and let me know how many will be attending. This is, by far, the highest priority just showing up.
Testimonials - If possible we'd love emails or documents describing how Lyme disease has impacted you. In particular focus on how this bill could help you get better care.
These are due today and it would be helpful to get them by tomorrow's meeting. That said, if you send them late we'll still try to include them.
Thank you so much to those of you that have responded and we look forward to hearing from many more.
Warm Regards, Cathy Kettmann
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Tincup
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td.. can you give us a link to the bill and more information? If so, after taking a look I may be able to drop a quick note for you.
It's very similar to the one CT has already passed and that VA and MN are working on as well.
It was tweeked at our last meeting but the changes aren't here yet. We meet again tomorrow too.
Right now we are trying to flood them with papers and warm bodies to prove this isn't as small as they are thinking.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Tincup
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posted
Thanks for that info.
It was nice to see this at the top of the bill...
"In the Year of Our Lord Two Thousand Ten"
Question...
Are you addressing this section.. and/or has it been, will it be amended?
"... or such other strains of borrelia that are recognized by the National Centers for Disease Control and Prevention as a cause of Lyme disease. Lyme disease includes an infection that meets the surveillance criteria set forth by the National Centers for Disease Control and Prevention, and other acute and chronic manifestations of such an infection as determined by a licensed physician."
I ask because if we write to support it in this current form, it could not be officially changed and that is obviously not what you want to happen.
sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
Up!
Posts: 4258 | From over there | Registered: Jul 2001
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Yes, at this time, we have that exact text in our bill since it was taken straight out of the CT bill that was passed.
The VA bill has something similar with the same context but worded less "legally".
The MN bill doesn't seem to use this text.
We do still have the ability to amend the bill, so any feed back asap is always appreciated.
If you want to bring this to private email, you use to have my email address. If you need it, let me know.
Thanks for any help possible. We obviously are trying to get a ball rolling in this state as well and are all fighting for the same cause.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
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posted
Hey td...
The "meeting" you spoke of.. is that the bill hearing?
SO sorry to ask so many questions.. just trying to get the facts so I can try to help.. and I am quite tied up and only stopping in for a breather now and then.
But if I can get behind it.. and understand it all... I will gladly send it out to my list and send a letter in myself.
My concern is if I can't get a letter done TODAY (that is what you want?) ... can it be sent in otherwise?
I also don't want to make the BIG mistake of supporting a bill without the final wording in it.
As you know we were big time snookered here by a legislator saying she would put in an amendment to fix a bill she wrote and wanted us to support...
So everyone wrote in support of it on that agreement... and at the last second (after meeting behind closed doors with ho ho Hopkins and the health department) ...
She snuck the bill in on the floor with no one knowing the vital amendment wording was NOT attached... even those voting on it didn't realize it.
So my questions now are being tossed out to watch your backs and ours too.
About email... no can do right now. That box is being ignored pretty much while I am doing a project. Best bet of catching me is here... on and off.
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
The meeting I was speaking of is at 2 pm today which is just the commmittee trying to iron out the last of the details before the hearing.
We met last week for the first time and seem to have a really good team, so will keep our fingers crossed.
I don't know if you may have missed the original thread that I had put on regarding this, but both of them are over in the Advocate section.
Thank you for any help or guidance you can offer. I KNOW you have a full plate.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
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posted
How did it go?
I will check Activism tomorrow... thanks! My brain died about 20 minutes ago and I couldn't think if I had to.
I have compared the NH and VA bill to see how they read side by side... just for fun and to see if I can support one or both. I will share some of my notes below.. and will post in Activism too.
REMEMBER...
This is only my opinion and I am NOT an expert on how to get a bill passed or even how to understand them.
I am, though, kind of an expert on how to KILL bills by now.. HA!
Maryland politics- with ho Ho Hopkins and the Health Department and the IDSA being basically one in the same here... or worse... and having politicians that have out and out told us they would do XYZ and then didn't and snuck something else through... well, some are not to be trusted... and this is NOT the place to try to pass a bill.
At least not till the IDSA has a few more more nails in its coffin... which may be coming soon!
I'd asked about having other TBD's in a Lyme bill in the past and was told it would be a problem ... but I didn't ask why at the time. Go figure, I should have! Anyhow...
The VA bill states..
C. The authority granted in this section to prescribe, administer, and dispense antibiotic therapy shall also apply to other tick-borne infections.
My GUESS is that there is little to no evidence/peer-reviewed studies showing other TBD's (RMSF, Babesia, Bart, etc) can NOT be cured with standard protocols...
And can become chronic and/or require additional treatment and/or any documentation that more treatment works better than less for other TBD's.
There are a few places it is mentioned in the literature but not nearly enough stuff to bank on ... and they are not strong enough references to support limitless therapy.
Kind of the same argument that we have with Lyme and the IDSA's flunky theories ... but at least we DO have multiple studies showing Lyme persistence... just a bunch of butt-heads hanging around trying to deny it.
AND- the insurance companies will be crawling all over that TBD treatment clause in MY opinion. Bad enough it is Lyme they could get stuck paying for.. but do they want to pay for Mepron/Zith for the rest of someone's life? Or for 9 months even at approximately $1,500 a month?
As is with Lyme.. they will have to go from paying about $100.00 per patient for Lyme now with the IDSA guidelines recommending against more treatment...
To $40,000.00 to $60,000.00 per year I believe it says for long term treatment for chronic Lyme... and that could be for a life time.
AND- I don't believe Bartonella, for example, is officially recognized as a tick borne disease yet. FINALLY Hopkins put out an admission it COULD be .. but generally speaking not much in the literature about it being in ticks AND able to be passed to humans that way ... especially in USA abstracts.
AND- It states "anti-biotic" therapy for other TBD's. Technically speaking, not all other TBD's require antibiotics, as such .... but rather some need anti-parasitic drugs, anti-malarials, anti-microbials, etc.
You need to be very careful on the exact wording or else you will legislate your way OUT of being treated... and can make the situation worse for thousands or even millions of others.
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Bill comparisons:
NEW HAMPSHIRE- No licensed physician may be subject to disciplinary action solely for prescribing, administering, or dispensing long-term antibiotic therapy for a patient clinically diagnosed with Lyme disease, if a diagnosis and treatment plan has been documented in the physician's medical record for that patient.
VIRGINIA- The Board of Medicine shall not initiate a disciplinary action against a licensed physician and such physician shall not be subject to disciplinary action by the Board of Medicine solely for prescribing, administering, or dispensing long-term antibiotic therapy to a patient clinically diagnosed with Lyme disease, provided such clinical diagnosis and treatment has been documented in the patient's medical record by such licensed physician.
Ok.. the first one is better in my opinion... because..
The Virginia bill states the Medical Board can't "initiate" an action... but it doesn't close the deal by saying others can't.
But the New Hampshire bill could potentially stop others (insurance companies, drug companies, disgruntled spouse, etc) from "initiating" an action because they didn't limit it to the Medical Board only in their wording.
BTW- Can the medical board in Virginia itself even initiate an action against a physician without a complaint from an outside party? If they can't .. that is a sticking point and could be a problem that needs to be addressed.
B. Nothing in this section shall be construed to grant any person immunity from investigation or disciplinary action for any other violation of this title.
I know the Maryland Board of Physicians used that in the statement they issued here for our Maryland docs to protect them. Since it is in the Virginia bill in advance, that is one less complaint that would surface from the Board if they were to complain.. so it can be a good deal in that regard.
New Hampshire MIGHT want to get advise on that, as they don't address that issue at all.
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
TC,
Thank you for your comments.
We've very carefully kept the NH Lyme bill very focused and specific.
We purposely avoided any mention of co-infections. We also avoided expanding the bill to include Nurse Practitioners, Nuturopaths and other treating entities.
It was determined that a focused bill had a greater chance of passage.
We have used the CT bill as a model, since that was successfully passed. Much of the core text remains the same although there were adjustments to make it relevant to NH.
Good luck to VA (and MN) on their bill(s).
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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