This message sent from the Lyme Disease Association of Southeastern Pennsylvania [email protected] ==================================================
Notice to all PA residents concerned about Lyme disease patients and their doctors.
A public hearing on Pennsylvania Senate Lyme bill #1199 will be held on June 22, 2010.
Your support is needed to get this bill passed into law!
This bill will benefit Lyme patients and the doctors who treat them. You can read the entire bill at the links below.
IT IS UP TO PATIENTS NOW MAKE SURE YOUR LEGISLATORS KNOW HOW SERIOUS THIS IS TO US! WE NEED YOU TO SHOW YOUR SUPPORT BY ATTENDING THE HEARING!
See http://www.lymeactionpa.com/ for details on the hearing, location, parking, carpooling, etc., a copy of the bill, and for a link to an ON-LINE PETITION IN SUPPORT OF THE BILL. If you can't go to the hearing in person, please fill out the petition today (it is open through Sunday, June 13th) and send it to everyone you know. This will go to the Senate committee members.
LymeActionPA was organized last year to focus on Senate Legislation on Lyme disease and includes 12 PA Lyme groups including LDASEPA. This effort resulted in the Senate Bill #1199 introduced by Senator Greenleaf earlier this year. The Banking & Insurance Committee has called for a public hearing on Lyme and this bill for the first time ever on June 22!
Senator Greenleaf said, "no one was interested," after introducing a Lyme bill every year for more than 10 years. Don't let that happen again. MAKE YOUR VOICE HEARD!
Talked to my llmd Friday, if this bill dies, doctors are going to be targeted heavily.
Posted by PinchotGail (Member # 5066) on :
I really don't know why they would say that. Probably just his or her opinion, and not to pick on you......
And the insurance companies know WHO they all are. If they wanted to they could have already been targeting them but they have not. No Pa. docs have ever been targeted. The ones testifying on Tuesday are from out of state.....
Hope to see many of you there!!
The House bill is moving too....should come out of the Appropriations committee for a full House vote. First time in Pa. history that the Senate and House versions match....Very similar, not exactly verbatim.
It is a heavy schedule and lots of work on the budget to do, so it will be tough to get it passed no matter what.......We have to try!!!
Gail
Posted by Tincup (Member # 5829) on :
First of all- I have supported this bill since the first time it was introduced. I wrote up a PA fact sheet for legislators, assisted with writing and editing testimony of my own and others, have sent letters to legislators, signed petitions, made phone calls, worked with PA docs on the bills, talked it up and advertised it, etc, over the years.
I just took time to finally read the bill again in its new form- after being asked to help with pushing it and working on testimony for the upcoming hearing.
Just so folks know... I see problems that we didn't have in the past with this bill. BIG problems.
Things have changed drastically in the Lyme world... and not in our favor.
All throughout the bill it refers to the "standard of care".. including in the insurance and education sections.
One section even describes the "standard of care", making the problem worse.
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"Standard of care." All established recognized clinical practice guidelines for the treatment of Lyme disease listed in the National Guideline Clearinghouse or subsequent database.
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If it passes with this wording- the educational portion, insurance issues and everything else will be based on the IDSA Guidelines because in essence there are no "approved" other guidelines right now. NOT a good thing.
Did anyone think about/remember the fact the ILADS guidelines were removed from the National Clearing House a while back, leaving ONLY the IDSA guidelines there (and like-minded ones)?
And the IDSA claims their Guidelines are now vindicated and no longer a problem since the "independent panel" decided tis true.
I understand there will be several IDSA ducks providing testimony too ... not a good thing, especially if they are (and I think some are) the same ones that have been so bad before. Historically bad actually. Anyhow..
This bill in its current form makes the IDSA standard of care THE standard because there are no other "approved" guidelines that would help us. You really do not want to make a law that does that.. in my opinion.
I have to wonder if the IDSA even considered that point? If so they would WANT the bill... except for the fact the Task Force will boil them over due to its make up.
They don't want anyone other than themselves to have any say in how Lyme is handled and will fight that possibility to the death.
Currently there isn't a set standard of care in PA and patients are being treated by LLMD's and Lyme education, thanks to PA groups and our US Constitution, is getting out there ... and the Medical Board and others are NOT going after the docs in PA, as previously reported.
That is a good thing (nothing is perfect) compared to what this bill would do.
Another point- It also calls for the bill to be in effect immediately. Unless there is a miracle in the making... there is a slim chance ILADS will have anything published and back on the National Clearing House web site soon enough to cover PA folks and avoid this potential disaster. I may be wrong... but I've seen nothing indicating the Guidelines will be back up there in the near future.
Another thought...
Each state has its own policies... but some will not allow bills to pass unless both House and Senate bills do match- word for word. Some states will send unmatched bills on to be hashed out through another committee... and if not in agreement at that point they die... or at the least they are stalled until after the session ends where they will die.
I do not know PA's policy... but that may be a sticking point to consider.
I'd LOVE all PA patients to have the very best.. no doubt ... but in my opinion this can make the situation worse for doctors and patients, rather than better... as we've seen happen in other places.
Is this situation somehow being addressed?
Anyone?
Although I love the passion and desire of folks to help themselves and others get better treatment... I am truly concerned with the wording now that the ILADS guidelines are no longer on the National Clearing House list.
Passing a bill with bad wording or trying to just for the sake of getting a bill passed because someone wants one is NOT cool and is actually dangerous.
I don't see how these pitfalls can be avoided. Maybe someone has a plan to cover it?
PS- I know some ILADS docs will be there... and may plan on saying the ILADS Guidelines are being worked on and the old ones are not "out of use" and are ok..
But that dog don't hunt.
Example- If a cancer doctor treated patients with old guidelines that were intentionally pulled off the National Clearing House because the American Medical Association and other big groups (including insurance groups) felt after 5 years all guidelines are officially "outdated" and the information within is not suitable for use in daily patient care ...
Rather than use the newer and "approved" guidelines that ARE available and accepted (IDSA in our case).. and a patient was harmed in any way while using the old guidelines....
Those promoting the use of the old guidelines (legislators, doctors, insurance companies, health departments, etc) and those using them in their practice would be responsible for any damage to the health of the cancer patient.
This bill is a very risky move and not one to be taken lightly. If I were the cancer patient and learned my doc used old guidelines and I got worse (like Lyme patients often do) ... I'd be VERY unhappy.