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» LymeNet Flash » Questions and Discussion » General Support » Action Alert! Governor Cuomo has 10 Days to Sign Lyme Bill

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Author Topic: Action Alert! Governor Cuomo has 10 Days to Sign Lyme Bill
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)

....................................................

Breaking up the paragraphs for easier reading for many here -

[ 12-08-2014, 09:43 PM: Message edited by: Robin123 ]

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KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
poppy
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Thanks Karla. I did this and it did work for out of state people.
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poppy
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Can I make a suggestion? Put that 10 day deadline in the subject line. Many people will not understand the urgency of this, with responses now needed from everyone, not just New Yorkers.
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KarlaL
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Thanks for the suggestion Poppy. Done!

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KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
randibear
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Dont hold your breath

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do not look back when the only course is forward

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Samlyme
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The same thing happened in Boston this year. The bill to force insurance coverage got approved all around and then just randomly sat in a committee. There was talk of rewriting some language but really that's just how they kill things without actually voting one way or another.

The month before bills were all to be decided on there was some letter written to the committee by a small business group complaining about insurance rate increases. People said the group was just a front group for insurance lobbyists.

Then it was said that only non controversial bills are voted on in the last thirty days of the legislative session. Even though the bill had no previous objections that letter made it somehow controversial and so the bill died there.

We're supposed to be happy that it wasn't voted down and now it can be resubmitted next year and we start over. If we live that long.

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KarlaL
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Dear Sam,

I live on the NY/MA border and I am very familiar with history of both bills. In June, the NYS Lyme Disease Patient Rights/Doctor protection bill was passed unanimously by both the NYS Senate and Assembly, so it has gotten MUCH, MUCH farther than the MA insurance bill, which didn't make it out of committee.

The NYS legislative sponsors are committed to this bill, and I believe that Cuomo is under a lot of pressure to sign the NY bill into law. We absolutely need to keep the public pressure up by writing to Cuomo.

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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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More press for our bill from the Albany Times Union. Please thank the Times Union for covering this issue and help to spread the word by liking, commenting on, or sharing this article and encouraging your friends to write to Cuomo using the

http://www.Cuomo123.com link

or http://www.governor.ny.gov/contact

Please see Jill Auerbach's letter as a guide.

KarlaL


Advocates of alternate Lyme treatment await Cuomo's signature
Investigation of physicians for alternative treatment use would be prohibited


By Claire Hughes
Updated 6:43 am, Monday, December 8, 2014

Albany

For the complete article, go to: http://www.timesunion.com/local/article/Advocates-of-alternate-Lyme-treatment-await-5941934.php

Patient advocates and doctors who want expanded treatment options for Lyme disease have been clamoring for weeks for Gov. Andrew Cuomo to sign a bill that was delivered from the Senate to his office Friday.

They call it the "Lyme bill," though the Patients' Rights/Doctor Protection Bill, barely more than a paragraph in length, makes no reference to the tick-borne disease that has proliferated in counties along the Hudson River.

The proposed legislation prohibits the state board that oversees physicians from investigating doctors solely because they use treatments not universally accepted by the medical profession.

The implied beneficiaries of the bill are doctors who treat what they call "chronic Lyme disease" or "multiple chronic infectious disease syndrome" - a condition not recognized by the country's most prestigious group of infectious disease doctors - with remedies that include the long-term administration of intravenous antibiotics.

These doctors, as well as a cadre of loyal, passionate patients, have complained for years that the state's Office of Professional Medical Conduct has targeted them for using treatments not sanctioned by the Infectious Disease Society of America.

Though the bill is similar to an internal memo that has guided OPMC investigations since 2005, doctors who treat chronic Lyme and their patients believe the law would free physicians to use alternate treatments without fear of the need to mount costly defenses to protect their professional licenses.

"Right now, many of the physicians that would love to care for their patients (outside IDSA guidelines) feel threatened by the potential for an investigation through the Department of Health or the OPMC, which can upend any clinical practice," said Dr. Ronald Stram of the Stram Center for Integrative Medicine in Delmar. . .

For the complete article, go to: http://www.timesunion.com/local/article/Advocates-of-alternate-Lyme-treatment-await-5941934.php

...............................................

Breaking up a paragraph for easier reading for many here -

[ 12-08-2014, 09:45 PM: Message edited by: Robin123 ]

--------------------
KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
poppy
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I don't think I want to thank that newspaper, considering some of the things that were said in this article. Most prestigious? Clamoring?

And they say there is a memo already preventing targeting lyme docs, not mentioning that it has been ignored for several years now.

These people are no friends of ours or honest reporting.

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KarlaL
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Poppy,

I can see why you thought the article was slanted towards the IDSA, even though the patient position was also represented. Why don't you share your thoughts and concerns in the comments section of the article or send a letter to the editor? I shared some of my concerns in the comments section, which I hope will contribute to the discussions happening right now in the state government and contribute to the education of the reporter for future articles as well. I see fighting for our rights as a process and since Lyme disease is a complicated topic for reporters to understand, we are never going to get perfect press coverage, except perhaps in the Poughkeepsie Journal.

I disagree with you about the memo, there are several instances in the article where it states that physicians, patient advocates, and lawyers are claiming that the memo is being ignored and/or that codifying it into law will strengthen the legal position of doctors who feel that they are being targeted.

One of the concepts which I tried to bring forward in my comment and which Lorraine Johnson supports, is that the new ILADS treatment guidelines are a "medically accepted standard of care," which is a legal concept which includes peer-reviewed evidence-based treatment guidelines that are accepted by a professional medical society in its definition.

http://www.hhs.gov/ohrp/newsroom/rfc/comstdofcare.html

[ 12-09-2014, 07:19 AM: Message edited by: KarlaL ]

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KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
poppy
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Thank you for your reply. I did contact the reporter, not being able to find the comments section. Maybe it was obvious, but in my brain impaired condition, has to jump off the page!

The point I was making is that the reporter injects opinion in sorting her facts, but the other side is relegated to patients, who have already been discredited, along with their doctors, by the same reporter.

Guess after so many years of reading slanted newspaper articles, I just don't have patience anymore.

HOPE EVERYONE IS CONTACTING THE GOVERNOR AT THE LINK YOU GAVE US.

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KarlaL
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The comments section is at the very bottom of the page and on my computer, it takes a minute or so to come up.

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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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‘Lyme bill’ awaiting governor’s action

Chatham Courier
By Karrie Allen

For the complete article, go to:
http://www.columbiagreenemedia.com/chatham_courier/news/article_200cc122-7fc6-11e4-9da5-73c44d1cc9b0.html

NEW YORK STATE — Lyme sufferers or those who have loved ones suffering from the disease are waiting anxiously for Gov. Andrew Cuomo to make a decision on a bill that would protect physicians in treating Lyme disease.

The Patients’ Rights/Doctor Protection Bill, commonly known as the “Lyme bill,” was passed by both chambers of the New York State Legislature earlier this year.

According to Richard Azzopardi, a spokesman for Gov. Cuomo, the bill was delivered to the governor on Friday and he has until next Wednesday to consider it. Until then, it remains under review by his Counsel.

The bill “provides that physicians who treat Lyme and other tick-borne diseases according to medically recognized standards of care will not be subjected to arbitrary and capricious investigations of their medical licenses by the Office of Professional Medical Conduct,” according to a press release issued by U.S. Rep. Chris Gibson’s office on Dec. 2.

Gibson (NY-19) and U.S. Rep. Sean Patrick Maloney (NY-18) strongly support this bill and in the press release, they called on Gov. Cuomo to sign the bill into law.

This bill “makes common-sense improvements to state regulations, putting treatment decisions in the hands of physicians and instituting guidelines to help our state fight this public health scourge,” said Congressman Gibson.

For the complete article, go to:
http://www.columbiagreenemedia.com/chatham_courier/news/article_200cc122-7fc6-11e4-9da5-73c44d1cc9b0.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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Please, join our campaign to ask Governor Cuomo to "Sign the Lyme disease Patient Rights/Doctor Protection bill."

NYS residents, please use: http://www.Cuomo123.com

Residents of other states can use the sample letter from the previous link and the governor's contact form here: http://www.governor.ny.gov/contact

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 (how many) doctors, or I waited (how many) months for an appointment, or I had to travel (how) far (or out of state) to get to a doctor, or any other hardships you can think of a result of so few doctors being willing to risk their licenses to treat Lyme disease.

Let's get 10,000 emails to Cuomo! 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

--------------------
KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
   

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