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» LymeNet Flash » Questions and Discussion » Activism » Any update on NY Bill

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Author Topic: Any update on NY Bill
BobG
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Apparently Cuomo doesn't know what a NY minute is when it comes to the suffering of his constituents from this horrible disease.
Posts: 360 | From Massachusetts | Registered: Dec 2012  |  IP: Logged | Report this post to a Moderator
Tincup
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Sorry! It's a LONG process. The staff, and the legal people, take a handful of bills (no particular order), researches them, discusses each one, etc. etc. then makes decisions. There are a zillion bills they must address.

When done they repeat that process.

They have till January to do the signing, IF they feel the bill is acceptable. So the wait could be another 3 or more months, or it could be decided tomorrow. No way to know.

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www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Pika
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I want to post a link to the Voter Voice thing on my blog. Does anyone have one?

It was on my Lyme Yahoo group at one point and I can't seem to find it.

Should I post the Voter Voice link or the phone number for Cuomo's office?

Thanks Lymies!

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Went through five years of hell because an IDSA doc ignored a CDC-positive Western blot in 2009. Started Lyme treatment in early 2014. Trying to wrap my foggy brain around the intricacies of this disease. I also have Hashimoto's thyroiditis.

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BobG
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Thanks for update. following this is the most I've learned about how that stuff works.
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DeathToSpirochetes
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Yes! This sounds hopeful!

http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/10/29/cuomo-sign-lyme-bill/18135435/

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Female. Misdiagnosed with fibromyalgia for six years. Started treating Lyme in 2014. IgG positive for mycoplasma and clinically diagnosed with bartonella. Also have Hashimoto's thyroiditis.

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Dancer
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Hi all,

Despite Gov's statement "I want to sign the bill"
we must keep working
to get emails sent to him by New York State residents.

NEW YORK RESIDENTS: Please see the NEW FLYER here - it contains Voter Voice short link and instructions:

http://nyclymesupport.org/cuomo.htm

** That page also has FAQs & ACTIVISM MATERIALS **

ON FACEBOOK:

https://www.facebook.com/NYVoicesOfLyme

ON TWITTER -

@nyvoicesoflyme -- please follow and retweet !


Everyone from any state -- please help by forwarding this info to everyone you know in NY state! Thanks!

Let's get some real momentum going!!!

(edited because links that actually work are helpful [Smile]

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KarlaL
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Yes, please keep working, because the NYS Department of Health may be trying to weaken the bill!

For more information on what Governor Cuomo is referring to when he says that signing the bill would be contingent on a memo: "The governor's office will contact the two sponsors to request a meeting to negotiate a "chapter amendment" to the bill. Once this is negotiated and agreed upon the bill will be signed and when the legislature starts its new session in January the first order of business is to pass all of the chapter amendments."

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KarlaL

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Dancer
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UPDATE! Sat. Nov 1

From now to Election Day Nov. 4 we are ramping up efforts to get Gov. Cuomo to sign the Lyme bill - and now, the message is:

Governor Cuomo:
SIGN THE LYME BILL WITH NO AMENDMENTS!


Some may have heard already that Cuomo wants changes to the bill.

While that is being discussed amongst legislators, we want to PUSH HARD to get lots more Voter Voice emails from NYS residents to Cuomo demanding he sign the bill exactly as it was passed by NY legislature - No amendments!

Please:

[*] Distribute the *UPDATED* flyer every way you can.
Download it here: www.nyclymesupport.org/cuomo.htm )

Ask people to do it immediately, before the election. They can do it from their smartphone!

Note: only New Yorkers should send email. Others please contact any New York state residents you know.

[*] Share on Facebook: https://www.facebook.com/NYVoicesOfLyme

[*] If on Twitter , follow & retweet @nyvoicesoflyme

[*] For the able-minded - go to link below and see HOW TO's & FAQs document -- pages 2,3,4 for ideas on how to get more emails sent.

Please try hard!! The NY lyme docs really need us now, and we need them. It's for all of us!

Thank you!

All materials are on this page: http://nyclymesupport.org/cuomo.htm

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Dancer
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Reposting Karla's post from the other thread:

This is a New Campaign!

We want to emphasis that in light of Governor Cuomo's recent statement to the Poughkeepsie Journal, that this is a NEW campaign and all NYS residents who used voter voice to send a letter to Governor Cuomo before are welcome to send a second letter with the new message "Sign the Lyme bill into law with NO amendments!"

Please send your email to Governor today and use the sample email above to contact all your NYS friends and family as well! Remember to ask them to include the phrase, "Sign the Lyme bill into law with NO amendments!" at the beginning of their email.

One contributor at the New York Voices of Lyme website email 50 of her NYS friends, 15 of which emailed back to her that they had sent an email to Cuomo!

Background: Cuomo is being advised to ask that the wording of the Lyme bill be changed before he signs it. The governor's office will contact the two sponsors to request a meeting to negotiate a "chapter amendment" to the bill. The sponsors are the NYS legislators who wrote the bill, which in this case, is NYS Assemblywoman Didi Barrett and NYS Senator Kemp Hannon. They would have to agree to the changes before Cuomo signs the bill. Once this is negotiated and agreed upon the bill will be signed and when the legislature starts its new session in January the first order of business is to pass all of the chapter amendments."

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ellenluba
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I'm so glad to see that people are keeping this thread alive and active here. We are desperately trying to get as many New Yorkers as humanly possible to write to Governor Cuomo on the VoterVoice program at www.Cuomo123.com

Please remember that if you're a New Yorker and you last wrote a letter more than 3 weeks ago, then please write again, since this is now a new campaign to make sure he signs it without any amendments.

Also, as you try to get friends and family in New York State to write a letter it might be helpful to let them know that the way the bill is worded it will also protect ALL doctors who offer treatment methods that are not universally accepted by the medical profession.
Ellen

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KarlaL
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As of last week (Thanksgiving), the NYS legislature had not yet sent Governor Cuomo the NYS Lyme disease Patient Rights/Doctor Protection bill for his signature. Since the legislative session ends at the end of December, Governor Cuomo WILL be receiving it soon. NYS residents, If you haven't sent your email or letter to Governor Cuomo, its not too late!

Please, join our new campaign to tell Governor Cuomo to “Sign the Lyme disease Patient Rights/Doctor Protection bill with NO Amendments.” http://www.Cuomo123.com

Let's get 10,000 emails to Cuomo in 10 Days! For more campaign info including a flyer, sample email to friends & family, bill info, FAQ, and NY Voices of Lyme facebook link: http://www.nyclymesupport.org/cuomo.htm

[ 12-01-2014, 11:22 AM: Message edited by: KarlaL ]

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KarlaL

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KarlaL
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Lyme disease bill stalls with Cuomo staff review

Mary Beth Pfeiffer, Poughkeepsie Journal
5:57 p.m. EST November 29, 2014

For the complete article, go to: http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/11/29/lymedisease-antibiotics-cuomo-legislation/19674783/

Five months after passing unanimously in the Legislature — and a month after Gov. Andrew Cuomo said he wanted to sign it — a bill to protect doctors who treat Lyme disease with longer courses of antibiotics faces an uncertain future.

Senate and Assembly sponsors don't know why the bill, which passed the Assembly May 12 and the Senate June 18, remains unsigned.

"I don't have a direct response to your question as to what the holdup is," said Sen. Kemp Hannon, R-Nassau County, Senate Health Committee chairman and prime sponsor.

"I would love to be able to answer you but I don't know," agreed Nick Melson, staff chief for Assemblywoman Didi Barrett, D-Millbrook, the Assembly sponsor.

For the complete article, go to: http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/11/29/lymedisease-antibiotics-cuomo-legislation/19674783/

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KarlaL

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KarlaL
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NEWS: Gibson, Maloney push Cuomo to sign Lyme bill
3rd December 2014

See more at: http://lymedisease.org/news/lyme_disease_views/gibson-maloney-lyme-bill.html

Time is short for governor to approve NY bill to protect Lyme-treating physicians from capricious investigations by medical board.

From the Poughkeepsie Journal, Dec. 2, 2014:

By John Ferro

Pressure is increasing on Gov. Andrew Cuomo to sign a bill that would protect doctors who prescribe longer courses of antibiotics to Lyme disease patients.

On Tuesday, the two local congressmen representing Dutchess and Ulster counties - Chris Gibson, the Republican from Kinderhook, and Democrat Sean Patrick Maloney of Cold Spring - issued a joint statement calling on Cuomo to sign the measure into law.

Click here to read the rest of the article.

http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/12/02/gibson-maloney-cuomo-lyme-bill/19802729/


Click here to read press release from Rep. Gibson's office.

http://gibson.house.gov/news/documentsingle.aspx?DocumentID=398320

Click here to read letter from Gibson and Maloney

http://lymedisease.org/wp-content/uploads/2014/12/Click-here-to-read-letter-from-Gibson-and-Maloney.pdf

- See more at: http://lymedisease.org/news/lyme_disease_views/gibson-maloney-lyme-bill.html

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KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
KarlaL
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The NYS Senate sent the Lyme Disease Patient Rights/Doctor Protection bill to Governor Cuomo yesterday!

Forwarded letter from Jill Auerbach, Chair of the Hudson Valley Lyme Disease Association:

Dear Friends and Affiliates,

From what I understand the Senate sent the bill to Governor Cuomo yesterday at about 4:30pm.

It has 10 days (Dec. 17th) from when it reaches his desk to be:
1. signed
2. vetoed
3. if nothing is done it automatically becomes law
4. the last option is the Governor can add a memo, which would mean an agreement to amend and the exact wording of it would have been set NOW. The agreed upon amendment would be passed the beginning of 2015.

I think you all are aware that Governor Cuomo indicated to the Poughkeepsie Journal Editoral staff, that he would like number 4.

At that point we changed our messages to him including the e-mail at Voter Voice (www.cuomo123.com) to state "NO AMENDMENTS." That gave our sponsors who negotiate in Albany with his Counsel support and more power.

At this point in time, we do not wish to play chicken with Governor Cuomo. Our sponsors (Assembly member Didi Barrett, Senator Kemp Hannon, Chair of Senate Health Committee + Assemblyman Gottfried, Chair of the Assembly Health Committee) are the ones who are representing us. We could not have a more knowledgeable group when it comes to NYS Health Law. They will NOT allow the bill to be diluted or the intent under mined in any manner. They would have it vetoed before they would allow that to occur!

At this point, we must trust them to do what is possible, and if they decide to satisfy Cuomo's wish to have something altered that will not in any manner change the intent, then we must allow that to occur. Thus we are changing our message to: "SIGN THE BILL" we are removing the no amendment message now that it has reached this critical point.

It seems even out of state people can send an e-mail to Governor Cuomo at http://www.governor.ny.gov/contact

Below my signature is a sample letter. Put a message of your own at the top.

Jill Auerbach
Hudson Valley Lyme Disease Association, Chairperson
NYS Coalition on Lyme and Tick-borne Disease, Member

"What's the problem? Well it's the ticks of course!"

------------- Sample letter below ------------

Add at least one sentence of your own here, such as:

I am concerned because I (or my child, or friend) have Lyme disease, or I was turned away by doctors (how many), or I waited # months for an appointment, or I had to travel this far # to get to a doctor (out of state?), or any other hardships you can think of because of this antiquated position vis a vis Lyme.

THEN YOU CAN ADD THIS
I am pleased to hear you are in support of crucial Lyme disease legislation S07854 and A07558B, which currently sits before you. I am writing to urge you to sign the Lyme Bill into law. The lives of thousands of depend on it. This legislation will enhance options for seeking treatment for Lyme disease in New York State. The Centers for Disease Control estimate that there are 300,000 new cases of Lyme disease each year, roughly ten times higher than what was previously reported. Based on this estimate, more than 60,000 New York state residents contracted Lyme disease in 2013. When left untreated, or under-treated, victims of this disease can suffer extremely incapacitating illnesses that can lead to significant health care costs and reduced economic productivity.

The proliferation of Lyme disease is a complicated and threatening medical crisis, especially in New York. If we are ever to unravel the complexities of Lyme disease and find a cure, it is ultimately good science that will lead the way. In truth, that kind of good, decisive science probably is years away. But one thing is certain. One fact that is statistical and terrible and true is that a meaningful number of people (up to twenty percent or more of those treated for Lyme disease) do not get better after the recommended treatment. And many of those people go on to develop chronic, disabling conditions that may last a lifetime. I am asking you to support legislative action that protects patients' rights to work with physicians, and with their consent, receive the treatment of their choice. The bill that I am asking you to sign is exactly this kind of legislation. This bill would allow practitioners to act in the best interest of the patient without fear of punishment from the professional discipline system.

As you decide whether to support this bill, I ask that you think about what it must be like to be a patient who suffers with this illness. Try to imagine if it was you or your child. Please put your support behind this legislation to ensure that the growing number of sufferers of Lyme receive the treatment and recognition they deserve.

Thank you for your support.
(Your signature)

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KarlaL

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