Wow! Energetic advocates from the NYC Lyme Support Group have lunched a new campaign to get 10,000 emails to Governor Cuomo in the next 10 days. They have started a Facebook page, a web page with information and FAQ, and produced a nice brochure to hand out and post. All the links are in the email below.
KarlaL
Sample text for an email to friends/family
Copy/paste the text below into an email. Edit the text if desired. Sign your name. Be sure to add the flyer as an attachment to your email.
Dear Family & Friends, I am writing to you today because I NEED YOU and other NYS residents to email Governor Cuomo. Urge him to sign the Lyme Bill into law today!
It takes only a few minutes & even works from smartphones. You just need to add 1-2 sentences in the "Opening Comments" box and your contact info. Please only one email per person.
Otherwise -- please read on for why this is so important to me!
Doctors in NYS who will treat chronic Lyme patients with more than the cookbook 2-4 weeks of treatment, are being harassed by the NYS medical disciplinary agency, the OPMC, despite the fact that there are published guidelines validating longer treatment. The bill I am asking you to support, S7854, would enable my doctor to treat me without fear of losing his medical license.
Please also forward this email to everyone you know who lives in NY, post to your facebook page, print flyer out and distribute to family, friends, neighbors.
You've been with me over the years as my family and I have struggled with Lyme and tick- borne disease. You have witnessed how valuable my Lyme doctors have been to my quality of life, and seen the amazing difference itʼs made for me. Understand I am just one of tens of thousands of sick patients that sick that have been helped.
Now realize, the doctors who pulled me out of that nightmare are the ones being targeted! Please do what you can to keep these treatments available for others.
[ 10-30-2014, 06:14 AM: Message edited by: KarlaL ]
Posted by KarlaL (Member # 29631) on :
Help NYS Assemblymember Didi Barrett (Hudson) to convince Governor Cuomo to sign our Lyme bill into law, by sharing your personal story in a short video. The video can be posted online on Didi Barrett's Facebook page and will be combined to send to the Governor’s office. Each video should answer the following questions:
How has Lyme affected your life and your loved ones? What would it mean to you if this measure was enacted into law?
With support from neighbors and advocates from across the state, Assemblymember Didi Barrett (D- Dutchess, Columbia) launched a video calling on Governor Cuomo to sign legislation she authored that would expand treatment options for those suffering from Lyme disease (A.7558B). The video can be found here:http://bit.ly/LymeBill
Step by step instructions for sending your video using your smart phone.
• Record the video on your phone. • Install the free Drop Box app to your phone: https://www.dropbox.com/ • Open Drop Box and sign up for a free account. • While in Drop Box, click on the Photos icon. • Select your video and it will be downloaded into your Drop Box folder. • Open your video in Drop Box and select the share icon (it looks like a box with an arrow). • Either copy link and post it onto Didi's facebook page or email the link to: [email protected]
[ 10-30-2014, 06:16 AM: Message edited by: KarlaL ]
Posted by KarlaL (Member # 29631) on :
Great News, but we are only partly there! Will the Governor's memo try to dismantle the purpose of the bill or not? We need to keep those letters coming and because we need a voice in what the Governor attaches in his memo, not just the Department of Health.
Please share this article and thank the Poughkeepsie Journal for pressing this issue with the Governor before the election.
KarlaL
Begin forwarded message from Ellen Lubarski, of the NYC Lyme Support Group:
Thanks, Karla, for posting this.
I just posted the PoJo article quoting that Gov. Cuomo said he "would like" to sign the bill. That is exciting.
BUT, remember that it's not over till it's over. Cuomo has reservations about the bill that he plans to express in a memo if he does sign the bill.
So until we have a signed bill that does not chip away at the protection that our doctors need, it's essential that we do everything we can to get those 10,000 letters from New Yorkers to Cuomo on the VoterVoice page which you can access at www.Cuomo123.com
-----Be sure to fill in a personal note in the Opening Comments or else it won't be counted as a letter.
----Also, please write only one letter, or else it looks like we are padding the letter writing and it will weaken our impact. (If you are dying to write more letters, please use the email form on Governor Cuomo's website. )
----This action is now focussed on getting New Yorkers to send the letters, since NY residents are his constituents and are the ones he needs to listen to.
The second important thing to do is to write to family and friends who live in NYS, which is what Karla address in her email above. You can use the sample she posts and adapt it to the facts of your own situation. Attach the flyer which you will find at http://www.nyclymesupport.org/cuomo.htm because it clearly and simply explains what they need to do.
A few people have worked extremely hard to put this campaign together despite being very sick. I have not yet asked if I could make their names public, otherwise I would nominate them for some kind of public service award. Let's not let them down. Let's not let our doctors down. And, mainly, let's not let all Lyme patients down. Get as many New Yorkers as possible to write Gov. Cuomo at www.Cuomo123.com
Ellen
Poughkeepsie Journal: Cuomo: 'I want to sign the Lyme bill'
Gov. Andrew Cuomo expects to sign a Lyme disease bill later this year that aims to protect doctors against professional discipline by the state for treating outside current guidelines.
The Infectious Disease Society of America holds that 28 days of antibiotics are enough to kill the spirochete that causes Lyme disease. However, some advocates in the medical community and sufferers of Lyme disease have fought to change those guidelines and allow longer courses of antibiotics, which they say can hold the disease at bay and in some cases cure it.
"I want to sign the Lyme bill," Cuomo said, in an exclusive interview Wednesday with the Journal. "My kids have had it. I lost a dog because of it. It's a terrible disease."
Cuomo said, however, that there are some technical issues with the bill, and the signing of it would be contingent on a memo that could be written next year correcting some of those issues.
Asked what those issues are specifically, Cuomo referred the Poughkeepsie Journal Editorial Board to his counsel, and said the technicalities were "in the weeds."
The Journal recently wrote a series of investigative articles on Lyme disease and the controversy around treatment guidelines. The Hudson Valley is considered the epicenter of the Lyme disease epidemic in the country. There are other doctors who advise there is no evidence that prescribing more than 28 days of antibiotics for Lyme would do more good than harm.
"I am thrilled if he's going to sign it. But I do have reservations, in terms of what may be amended," said Jill Auerbach, a LaGrange resident and chairwoman of the Hudson Valley Lyme Disease Association. "If it frees doctors to treat patients as they see clinically necessary, I'm all for it…Patients should not be cut off at an arbitrary two to four weeks of antibiotic treatment. They have a right to get well."
Emily Stewart: 845-437-4882; [email protected]; Twitter: @estwrt
Posted by Dancer (Member # 11039) on :
YES!! 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:
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!!!
Posted by KarlaL (Member # 29631) on :
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."
Posted by poppy (Member # 5355) on :
I did this and got a message saying not sent because I am not a constituent. Is this only for NY residents?
Sorry, just re-read your posts and it does say New Yorkers. I am probably not the only lyme brain who missed it.
Posted by Dancer (Member # 11039) on :
Thanks for trying! (and I relate about missing parts of things I'm reading - especially online.)
We definitely are hoping that people from outside NY will contact any NY residents they do know. Thanks!!
Posted by Dancer (Member # 11039) on :
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!
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 email to Governor Cuomo before are welcome to use votervoice to send a second email with the new message "Sign the Lyme bill into law with NO amendments!"
One contributor at the New York Voices of Lyme website emailed 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."
[ 11-04-2014, 02:02 PM: Message edited by: KarlaL ]
Posted by Dancer (Member # 11039) on :
Yes! All New York State residents who previously emailed Cuomo should use Voter Voice to EMAIL AGAIN to say NO AMENDMENTS!
Keep spreading the word!
Posted by KarlaL (Member # 29631) on :
In a letter to the Poughkeepsie Journal, Holly Ahern, Lyme Disease advocate and an associate professor of microbiology at the State University of New York Adirondack does an excellent job weighing in on Lyme Disease and why Governor Cuomo should sign the NYS Patient Rights/Doctor Protection bill.
Spread the word! Like, comment, and share this with your facebook friends!
KarlaL
Valley View: Lyme is most misunderstood disease since AIDS Holly Ahern, Poughkeepsie Journal
With the possible exception of HIV/AIDS, no infectious disease in recent history has been as misunderstood, maligned or politicized as Lyme disease.
After more than two decades of controversy and government neglect, Lyme disease has become too large an issue to ignore any longer. A year ago, the Centers for Disease Control and Prevention reported that only 1 in 10 cases of Lyme disease were properly reported to public health agencies and increased the likely incidence to more than 300,000 new cases of Lyme disease in the U.S. per year. As a highly endemic state, a significant proportion of those cases are in New York. . .
Holly Ahern's essay now has over 3500 shares! Thank you!
Please share this editorial and include the following message with your link!
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
Lymedisease.org shared a link.
Following on the heels of Holly Ahern's call for NY Governor Cuomo to sign the Patients' Rights/Doctor Protection Bill, the Poughkeepsie Journal's Editorial Board solidly seconds the motion!
You, too, can ask Governor Cuomo to sign the bill by going to http://www.cuomo123.comto have your voice heard.
Battling Lyme starts with Cuomo's signature
Poughkeepsie Journal Editorial Board 4:29 p.m. EST November 12, 2014
Now that a hectic election season is over, lawmakers have a chance to settle many lingering issues for the betterment of people – including helping those fighting diseases and other health risks.
Here is an excellent place to start: Gov. Andrew Cuomo should make good on his promise to call up and sign a bill aimed at protecting doctors who provide long-term treatment for Lyme disease.
Specifically, this much-needed measure would enable physicians to prescribe long-term antibiotic therapy to a patient with symptoms of chronic Lyme disease without fear of retribution from government regulators.
Just days before Election Day, the governor told the Poughkeepsie Journal, "I want to sign the Lyme bill." He revealed there were some "technical issues" that likely would have be resolved during the implementation of the law, but clearly indicated these matters wouldn't prohibit him from signing the measure into law. . . .
Please comment, share, and thank the Daily Gazette in Schenectady, NY for this thoughtful, informed essay supporting the Lyme disease Patient Rights/Doctor Protection bill. Studies show that Lyme disease is spreading North and West from the Hudson Valley and Long Island and will soon be serious a statewide issue.
Karla
Editorial: Governor must sign Lyme disease bill Friday, November 14, 2014
With the Polar Vortex upon us and the Ebola scare closer in the rearview mirror than it appears, right now might seem like an odd time to be talking about Lyme disease.
But the governor and the state Legislature will return to Albany soon, and on their desks is a bill that could help treat this terrible, growing tick-borne illness.
The legislation, entitled the Patients’ Rights/Doctor Protection bill (S.7854/A.7558B), would enable doctors to use effective forms of long-term treatment on patients with Lyme disease and other tick-borne illnesses without fear of being charged with professional misconduct or loss of medical license.
We're not talking about turning our backs on legitimate medical science and allowing any quack to invent his own treatment for the disease.
We're talking about allowing government regulators to be flexible when doctors employ new, long-term antibiotic treatments to care for patients suffering from pain and chronic health problems due to long bouts with it.
The medical community is particularly wary of long-term antibiotic treatments. But such long-term treatment is sometimes necessary to fight stubborn cases of Lyme disease where short doses of antibiotics haven’t worked. . . .
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, it's 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, 11:25 AM: Message edited by: KarlaL ]
Posted by DeathToSpirochetes (Member # 44862) on :
Hi, question:
If we have already emailed "sign the bill with no amendments" should we now do it again as Dancer suggested? A bit confused.
Thanks!
Posted by Dancer (Member # 11039) on :
Good question. No. The email about no amendments is the newest version and you shouldn't send it twice.
There was a previous version, before Cuomo said he wanted to change the bill. If you had sent in that one, then we'd want you to send another with the "no amendments" message.
Thanks for asking!
Posted by KarlaL (Member # 29631) on :
NEWS: Gibson, Maloney push Cuomo to sign Lyme bill 3rd December 2014
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.
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.
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.