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Bill Reading Class 101
EVERYONE, EVERYONE, EVERYONE needs to review this bill wording ASAP so they can see for themselves that the bill will be harmful if passed.
I've made the "bill reading instructions class" as simple as possible because we really need residents, patients and health care professionals to know how to read bills and need them to be totally informed of what is going on in their area so they can assist their NY groups in fighting this and the other dozen or more BAD bills that were introduced this year in New York.
NY- Senate Bill 6926
Skipping the first section of this bill to bring you the worst part that requires immediate action by New Yorkers.
I've highlighted in bold, black font the key words and phrases so you can read it more easily/quickly. My comments explaining those key phrases are in bold, blue, italic font.
2. (A) THE COMMISSIONER SHALL, IN CONSULTATION WITH HEALTH CARE PROVIDERS, RESEARCH EXPERTS, RELEVANT ADVISORY BODIES AND OTHER STAKE- HOLDERS, DEVELOP A STANDARDIZED PROTOCOL FOR THE DIAGNOSIS AND TREATMENT OF LYME DISEASE AND SUCH OTHER TICK BORNE DISEASES THAT MAY BE IDENTIFIED BY THE COMMISSIONER. [Standardized protocol = Diagnosis and Treatment Guidelines developed by the State of NY.]
SUCH PROTOCOL SHALL INCLUDE, BUT NOT BE LIMITED TO, GUIDANCE TO BE UTILIZED BY HEALTH CARE PROVIDERS WHEN A SEROLOGICAL TEST COMES BACK NEGATIVE BUT SYMPTOMS OF ANY SUCH DISEASE PERSIST. [How doctors are to interpret the lab tests and what to do if a patient remains ill after receiving the standard 2-4 weeks of antibiotics... in other words what to do if they develop the non-existent PTLDS- Post Treatment Lyme Disease Syndrome. Keeping in mind the NY Commissioner was/is deeply involved in the war being raged against animicrobial resistence (IDSA territory), it indicates you don't stand much of a chance of getting antibiotics when needed.]
THE PROTOCOL SHALL BE UPDATED UPON ANY ADVANCEMENTS IN THE FIELD OF LYME DISEASE, OR OTHER IDENTIFIED TICK BORNE DISEASE, TESTING AND TREATMENT.
AS PART OF THE PROTOCOL, THE COMMISSIONER SHALL DEVELOP, UPDATE AS NECESSARY AND ENSURE PROVIDERS DISTRIBUTE TO EACH PERSON UNDER THEIR CARE BEING TESTED FOR LYME DISEASE OR OTHER IDENTIFIED TICK BORNE DISEASE, A STANDARDIZED NOTIFICATION FORM, WHICH SHALL EXPLAIN, IN PLAIN NON-TECHNICAL LANGUAGE, THE FOLLOWING: [All New York health care providers shall give to each suspected Lyme patient- the following document to include... ]
(I) THE SYMPTOMS AND RISK FACTORS FOR LYME DISEASE AND SUCH OTHER IDENTIFIED TICK BORNE DISEASES; [This will be only the symptoms the CDC/IDSA say are symptoms- not the full list of symptoms. This will lead to many being misdiagnosed at the time and later on.]
(II) THE AVAILABLE METHODS FOR THE DETECTION AND DIAGNOSIS OF LYME DISEASE AND SUCH OTHER IDENTIFIED TICK BORNE DISEASE, INCLUDING INFORMATION ON THE RELATIVE ACCURACY OF THE AVAILABLE DETECTION AND DIAGNOSTIC TECHNIQUES; [Keep in mind NY already rejects (restricts the use of) IGeneX and other good Lyme tests; and the State of NY has recently developed their own Lyme test- watch for who has patents on it- that will further restrict someone from being properly diagnosed using a clinical diagnosis and/or all tools available. Additionally, the bad tests will be falsely reported to doctors and patients to be, according to the CDC/IDSA, sensitive and specific, allowing people who have negative test results to feel more confident in the results... aka- brain washing them into thinking they can't have Lyme disease if they have a negative test.]
(III) THE MEDICAL PROTOCOL ADOPTED UNDER THIS SUBDIVISION; AND [medical protocol = treatment guidelines]
(IV) RELEVANT MEDICAL INFORMATION DEEMED NECESSARY BY THE COMMISSIONER AND SHALL CONTAIN INFORMATION ON LYME DISEASE AND SUCH OTHER IDENTIFIED TICK BORNE DISEASES RISK, POSSIBLE CO-INFECTIONS AND OTHER PERTINENT INFORMATION. ["Relevant medical information deemed necessary by the Commissioner" in NY who hails from and/or who has close ties to Yale, Hopkins, Boston Childrens Hospital, University of PA, Mass General, etc.; and whose boss (Governor Cuomo) recently signed a Lyme bill that had wording missing and then allowed Senator Kemp Hannon- the sponsor of THIS bill- to fill it in later, sight unseen by patients or doctors in advance. The results were, of course, very damaging for Lyme treating doctors and made their situation worse.)
THE COMMISSIONER SHALL HAVE THE PROTOCOL AND STANDARDIZED NOTIFICATION FORM, REQUIRED BY THIS SUBDIVISION, DEVELOPED AND PREPARED FOR DISTRIBUTION WITHIN ONE HUNDRED TWENTY DAYS OF THE EFFECTIVE DATE OF THIS SUBDIVISION. [120 days allows no real time to make sound medical decisions that will affect all of our futures. Could this also be a prediction or hint that the new IDSA Lyme Treatment Guidelines are soon to be released? They'd fit in here nicely.]
(B) NOTHING IN THIS SUBDIVISION SHALL BE CONSTRUED TO CREATE A CAUSE OF ACTION FOR LACK OF INFORMED CONSENT IN ANY INSTANCE IN WHICH SUCH CAUSE OF ACTION WOULD BE LIMITED BY SECTION TWENTY-EIGHT HUNDRED FIVE-D OF THIS CHAPTER. [I believe(?) this is legal wording that would prevent patients from taking legal action (successfully) if harmed by this bill's provisions. Need a lawyers review here.]
S 2. This act shall take effect immediately. [No sunset clause- so no matter how bad this affect would be on NY residents and its medical professionals, it doesn't stop being bad on a designated date (to be renewed later if needed). The damages incurred will go on forever and ever amen.]
This bill, S6926, has already passed thru the Senate and is currently in the Assembly (House) Health Committee.
To see the bill wording click here.
So, what are you suppose to do about it?
I am not in New York. I simply stumbled on this huge mess and started putting the pieces together a few nights ago. I don't know who is currently in charge of bills in NY, but I do know this one and several others were prompted by the gathering where some NY Lyme treating doctors and patient advocates spoke (last year?).
Please Note- when you speak publicly or put on a presentation, especially for legislators, you MUST know your audience and not just walk away oblivious to it all afterward.
You MUST follow through and watch for any actions that are to follow or this is going to continue to happen. It is totally not fair to sick patients and residents who will become sick that you stir things up, smile for the cameras, then drop the ball.
Some advise not asked for, but when has that ever stopped me?
I would never ever ever consider dancing with any legislators or even approaching them without a written plan and specific goal, having educated all legislators in advance (not just a select few), and the full support, ahead of time, of the national Lyme Disease Association (LDA) and/or LymeDisease.org
These two groups have been around the longest, have the most experience and they know how to deal with bills when it is required. They also have an excellent reputation.
In fact, they are the only national non-profit Lyme related organizations in the USA who have patients best intesests at heart, and they are by far the most experienced at dealing with legislative issues. Between them, they've saved Lyme patients too many times to count and most patients (and doctors) don't even know that they have.
Lucy Barnes
June 8, 2018
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