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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.
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)
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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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. . .
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
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. . . .
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