Embedded Files
Renewed Push to Get A Bill Passed
Question- Why would anyone attempt to pass a bill knowing it will be changed, but not knowing what it will say?
Governor Cuomo stated he would like to pass the bill, but after communicating with the "other side", he has concerns and wants to add an amendment to it after the first of the year. He is not disclosing what the changes will be.
So again, why would anyone try to pass a bill not knowing what it will say? That's dangerous.
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October 29, 2014
posted 29 October, 2014 09:57 PM
From LymeNet Post
http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/34511
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!
Simple instructions are on the attached flyer
http://www.nyclymesupport.org/SignTheBill_Final.pdf
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.
OUR GOAL: 10 Days ~10,000 Emails.
Email Governor Cuomo Today: http://www.Cuomo123.com
(add 1-2 sentences in the "Opening Comments" box - see flyer for suggestions)http://www.nyclymesupport.org/SignTheBill_Final.pdf
For Flyer, FAQ & other advocacy materials visit: http://www.nyclymesupport.org/cuomo.htm
Keep track of how we are doing at: https://www.facebook.com/NYVoicesOfLyme/timeline
Bill text & justification: www.tiny.cc/bill7854
Thank you,
(your name here)
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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
Link to Didi Barrette's press release: http://www.didibarrett.com/news-archive/assemblymember-didi-barrett-launches-video-urging-cuomo-to-sign-lyme-bill/
Link to Didi's facebook page: https://www.facebook.com/pages/Didi-Barrett/311168413519
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: sidbombaj@gmail.com
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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.
The 10,000 letters in 10 days campaign has more info, including FAQ's , athttp://www.nyclymesupport.org/cuomo.htm
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 atwww.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; estewart@poughkeepsiejournal.com; Twitter: @estwrt
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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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THIS FINAL PUSH IS NEEDED: MAKE NY STATE BILLS S07854 AND A07558B LAW!
Use the form below to contact Governor Cuomo to tell him to SIGN THIS INTO LAW, to ensure Lyme disease patient rights to treatment.
One Final Push: Protect Our Right to Choose Our Treatment!
Crucial bills that will protect patient and practitioner rights in New York await Governor Andrew Cuomo's decisive signature. Please send the automated email below. Write 1-2 sentences in "Opening Comments", add your contact info and click. Your letter will go to Governor Cuomo and his staff.
For the Lyme disease patient, who may also have othertick-borne diseases, individualized treatment choice can be the difference between a healthy life and one of chronic, disabling suffering. If the physicians who treat in accordance with the standard that recognizes a value to longer-term antibiotic treatment are driven out of business by unfounded medical board investigations, patients will have nowhere to turn when the Infectious Disease Society of America (IDSA) Guidelines fail to work.
The New York Patient Choice Bill will protect all Lyme Disease patients' rights to work with the physicians of their choice to receive the treatment of their choice. This legislation also would allow practitioners to act in the best interest of the patient without fear of punishment from the professional disciplinary system which is having a chilling effect upon physicians' ability to treat their patients. It is important to note this bill is not intended to protect, nor will it protect, those doctors that act negligently.
If you want to learn more about the context and importance of this legislation, please read the paragraphs below. To send your letter and support this legislation now, please scroll down to the bottom of this page.
Most of the New York physicians who specialize in treating tick borne disease patients and who, at times, prescribe antibiotics beyond the 2-4 weeks recommended by the IDSA, have been investigated by the NYS Dept. of Health's Office of Professional Medical Conduct (OPMC). In many cases there have been multiple investigations.
These investigations cost these physicians tens of thousands of dollars for attorneys' fees and time away from patient care, when in almost all cases there has been no wrongdoing. As one physician explains it: "Just defending oneself at the 'investigation' phase is extremely stressful, financially and emotionally draining."
It is easy to understand why many physicians are reluctant to treat seriously ill Lyme patients, especially when there is such conflict about diagnosis and treatment. These are the LYME WARS that have such dire consequences to patients' access to the treatment of their choice.
In spite of the fact that more than one evidence-based standard of care exists and patients should have the right to participate in the decision making process when it comes to their own care, NYS taxpayer monies are being used to disproportionately investigate one group of medical professionals, thereby threatening patients' access to the medical providers and treatments of their choice. Ticks do not discriminate; you, your loved ones, or your child could be next.
View the entire bill here. [-] less
Letter to Governor Cuomo- on Automated Service
Body
Remaining: 3900
Customize Your Signature (optional)
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Recipients
- Governor
MessageSubject
Opening comments (optional)
https://www.votervoice.net/NYSCOALITION/Campaigns/36501/Respond
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Email Sent to Lyme Patients
Dear Group Leaders & Advocates,
A renewed push is underway to get Gov. Cuomo to sign Lyme bill S7854.
Please distribute attached flyer to email lists and post to website, Facebook, blogs, etc.
We are at a critical juncture here in New York State. Gov. Cuomo has until the end of the year to sign bill S7854. We need to flood his office with constituent emails demanding a change! Go to www.Cuomo123.org - be sure to fill in the opening comments. (Suggestions on flyer)
While only NYS residents should send email to Gov. Cuomo, out-of-state Lyme patients can help this effort by passing this info to NYS state residents they may know.
Bill S7854 is crucial to the welfare of Lyme patients in NYS. This bill protects all NYS patients’ rights to choose scientifically based, cutting-edge treatments by protecting doctors from unfounded harassment. Bill S7854 prohibits the investigation of any claim of medical professional misconduct based solely on treatment that is not "universally accepted by the medical profession.”
The attached flyer explains how to send an automated email through the Voter Voice system. Only New Yorkers should send emails because Gov. Cuomo will be most responsive to his constituents. But we’re asking all Lyme patients, friends and family to pass this request on to every New Yorker they know. Protecting the care of Lyme patients in New York, which has long been a “Lyme wars” battleground, will help patients and docs across the US.
Email Governor Cuomo - www.Cuomo123.com
Flyer / Sample text for email to friends & family
For Flyer, FAQs & other advocacy materials visit www.nycLymeSupport.org/cuomo.htm
Keep track of how we are doing at www.facebook.com/NYVoicesOfLyme
Bill text & justification: www.tiny.cc/bill7854
Thank you,
NY Voices of Lyme
A grassroots effort by NY State Lyme disease patients & advocates to make bill S7854 law.
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Posted on LymeNet...
posted 31 October, 2014 02:12 PM
K said "... the NYS Department of Health may be trying to weaken the bill!"
My bet is they are all over it, ripping and tearing it apart as fast as they can go- actually they are probably done with it by now.
This is scary. There were many bad versions of this bill in drafts early on and it was really HARD to get the bill to be at a less damaging point before some folks decided to support it.
Then when the final version moved forward Pallone said publicly at the hearing he would adjust it later (paraphrasing here).
For those who don't know him, Pallone is big time NOT our friend. Even the gators in our alligator pit won't take a bite out of him! Too sour and foul!
My concern is the Governor said this was in the works, and when they take another stab at it- obviously the IDiots got to the Governor with their "science"- it will be bad for us, and because it is a law we are stuck with it.
And since it will be done after the election (will the sponsors even be reelected?) do we think the sponsors, who needed the votes they hoped this bill would bring in, will be as concerned and/or able to fight the NYS DOH, the Governor, the IDSA, the CDC, the NIH, the Medical Board, etc. and hold our position so our docs will be ok??
YIKES! I don't know where I'm a gonna go when the volcano blows!
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October 31, 2014
After giving this more thought....
Why would anyone try to get a bill passed, knowing full well it is going to be changed, and not knowing what it will say?
In my opinion, that's dangerous.
It's like paying for a car in advance of knowing what kind of car you are going to be getting, except worse. This will be a law that will affect us and our future generations.
I hope this question is cleared up before people support a bill that could be dangerous for our docs and patients.
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October 31, 2014
FINALLY, some answers!
Why should we push to get a bill passed before we know what it will say?
To learn more I called the NY Governor's office directly this evening to ask about the bill process and chapter amendments, etc., and then specifically about the Lyme bill. I went over this 3 times with his office to be sure I got it right.
The bill is dead for this session. The Governor did not and will not sign it "as is".
When I asked if it made sense to write or call with our concerns or opinions now, especially since we don't know what the bill will say after it is changed by the legislature next year, they said it does not make sense.
Said it is better to wait until we can read the changes that will affect us, which will be posted on the NY Senate website, as generated, next year.
Then, after the changes are made, if it is passed by the legislature it will go back to the Governor again to sign, IF he approves.
I forgot to ask if the sponsors of the bill are not re-elected what would happen. Maybe next time!
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