posted
Hi folks, Over the years there has been one thing I've learned we can count on in the Lyme community; every time that we feel we have made progress, we are hit with a backlash. Now, after our success in getting S7854 / A7558B passed in the NY legislature, we are again experiencing a backlash.
RIght now the backlash is in the form of media coverage that denies the existence of chronic Lyme disease.
Also damaging, although probably coincidental, is that Senators have finished a study of labs that perform tests that they have developed and have not been FDA approved. This is currently legal, but the Senators have found those tests to be less reliable and want the law changed to require FDA approval.
The newspaper reporting has emphasized that the Senators specified that such lab tests for Lyme disease return false positives.
That is the atmosphere in which Governor Cuomo is being asked to sign a bill protecting the rights of doctors to treat chronic Lyme disease.
WHAT WE NEW YORKERS NEED TO DO:
1) If any NEW YORKERS reading this has not yet sent an automated letter from the voter voice site, please do so ASAP. Please note that if you sent an automated letter before July 1st that was to the legislature. You need to send one to the Governor now.
This generates emails that go directly to the Governor. Please remember that you need to fill in the first section, "opening comments," that says why you think we need the bill - either your own need or you know someone sick with Lyme or for medical freedom, etc. https://www.votervoice.net/NYSCOALITION/Campaigns/36501/Respond
2) Tomorrow, Wednesday July 9 or the rest of this week, call Gov. Cuomo, say you live in NYS and want him to sign the Lyme treatment protection bill S7854. Call 518-474-8390.
3) Even if you have already mailed out a request to friends and relatives to fill out the voter voice automated letter and call the governor, please ask again.
----- NON- NYS RESIDENTS SHOULD CALL CUOMO AND URGE HIM TO SIGN S7854-A7558B.
The Honorable Andrew M. Cuomo Governor of New York State NYS State Capitol Building Albany, NY 12224 (518) 474-8390
Thanks to all of you who are working on this. For those who are new, the bill can be read here: open.nysenate.gov/legislation/search?term=7854%5C
Thanks, Ellen
----- NON- NYS Residents use link below or call ---
All interested readers should call or write Governor Cuomo and urge him to sign S7854-A7558B.
The Honorable Andrew M. Cuomo Governor of New York State NYS State Capitol Building Albany, NY 12224 (518) 474-8390
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Posts: 819 | From New York, NY | Registered: Oct 2001
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Wrote Gov. Cuomo letter albeit I'm probably too late. At least it's one more voice.
-------------------- Ecclesiastes 4:9-10 Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. Posts: 338 | From NEPA | Registered: Mar 2011
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
It's not too late, but call and fill in the email form, too.
We must do everything we can.
Has everyone else contacted the Governor to urge him to sign the lyme bill into law??
We must all work together to get this passed.
Please be sure to do it today.
All the info you need is up above.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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This past Tuesday, some members of the NYS Coalition, a Lyme medical expert and a lobbyist who has been helping us with the NYS bill had a phone conference with the Assistant General Counsel to Governor Cuomo who handles health bills. She is the person who collects all the information that will go into making a recommendation about whether the Governor should sign the bill.
Two things seemed to come out of this meeting. One is that it does not look as if this bill will be ready for the Governor right now. The Assistant Counsel is new to Lyme and recognizes that she will need to read more information and to talk with the NYS Coalition more before making a recommendation to the Governor. A second phone call is scheduled for next week.
This is good in that it will give us more time to generate more grassroots contact with the Gov asking that he sign the bill - without the anxiety that the Governor can make his decision at any moment.
The second thing to come out of the meeting is that this will not be a slam dunk for us. The NYS DOH is questioning the bill.
Remember that we have two heavy hitters in NYS as far as IDSA followers go: we have NY Medical College and Stonybrook, so we can assume a great deal of pressure on the DOH to discredit us.
As of Thursday there have been 2,300 letters sent to the Governor on the Votervoice program. Please continue to get as many letters written to the Governor through this program as possible. Encourage people to let Governor Cuomo hear the cost of this illness in human suffering . We need to make sure he knows what is at stake if we lose the doctors who have most helped people with Lyme disease.
NY's cumulative total of 50,000 cases of Lyme disease represent 500,000 CDC-reportable cases in NY alone plus untold numbers of unreportable cases not meeting the CDC surveillance case definition. Half these cases fail IDSA-recommended short-term treatment. Our published survey shows that chronic Lyme disease is associated with a worse quality of life than most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis. Chronic Lyme is very expensive for taxpayers as well as patients. Protecting doctors who are restoring patients' health by treating outside the IDSA box makes good economic sense. Please sign the Lyme bill S7854-A7558B.
Phyllis Mervine LymeDisease.org
Our website should be operative again Tues. morning if you want to send him more facts from our patient survey. The summary is on LymePolicyWonk. Scroll down a ways to the profile head with a target on it. There also should be info somewhere on the COST of chronic LD, which New Yorkers can multiply by 500,000 to come up with a really big number.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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