Re: PA needs help passing Lyme legislation

From: A_Weisman (a_weisman_at_yahoo.com)
Date: 11/21/04 

Date: 21 Nov 2004 08:40:18 -0800

Neurolyme@HotMail.com (Neurolyme) wrote in message news:<8d125677.0411202043.70956247@posting.google.com>...
> GregGerber@hotmail.com (Greg Gerber) wrote in message news:<146041df.0411200740.55260810@posting.google.com>...
>
> > thanks, this is most helpful. You are right, there are disturbing
> > loopholes. It makes you think that less is more. That a bill of fewer
> > words and sections could have provided a clearer set of protections.
> > The RI bill was better but of course futile since there are no
> > treating docs for chronic Lyme in RI.
>
> The PA bill is better than the RI bill/law (by far), but I yield the
> floor to A_W on that one, although I suspect the response may be "I
> don't give a crap".

They are both like a really really long joke with a lame unfunny punch
line. A long way to go for a very dubious reward.

It is like the old joke (and to avoid telling a long joke with a
potentially unfunny punch line, I'm skipping the joke and going right
to the punchline--if you don't know the joke, don't worry about it):
The old joke about the missionary and his friends in the jungle
captured by a group of cannibals asked if they prefer death or buntu.
Either one is death by bunda.

(ok if you don't know the joke and really want to hear it, here:

http://www.jokes2000.com/jokes/files/joke9500.htm

Three missionaries are captured by a tribe of cannibals.

When they are brought before the chief, the chief points to the first
missionary and says, "Do you want death, or do you want Bunda?"

"I don't know what Bunda is, but it sounds better than death... I'll
take bunda."

A cheer goes up from the tribe, and they proceed to take turns bending
him over a stump and having their way with him before finally letting
him go.

The next day, the chief points to the second missionary and says, "Do
you want death, or do you want Bunda?"

Not wanting Bunda but wanting death even less, the second missionary
also chooses Bunda. With a cheer, they take him to the same stump, and
after a few hours they let him go.

The third day, the chief points to the last missionary and gives him
the same choice.

The third missionary, being more devout than the others, says, "I'll
take death!"

The loudest cheer yet erupts from the tribesman as the chief says,
"Death by Bunda!"

> > Do you agree the language there was better?

Death or bunda or death by bunda?

>I still am of the opinion
> > that this bill would help more than hurt in terms of the few treating
> > LLMDs in PA. Language could be more careful --I see serious concerns
> > in part due to sloppiness of wording and loopholes thus allowed-- but
> > I think there is more good here than harm in terms of what is
> > delivered.

The bill provides no real help. It does provide a potentially false
sense of security. And it is a long way to go for a dubious punchline.

Efforts can be better spent.

More importantly this sets a dangerous precedent both for Lyme and for
health care writ large. Patients and legislatures should NOT be making
disease specific legislatively mandated health care policy. Period.

Here's two reasons and there are dozens more.

Reason(s) 1: If we ask for it we may get it and not like it. It is
more likely that the prevailing majority view will be legislated than
the distinct minority view. If we start the ball rolling it may roll
back on us. In essence it did in CT and it could have been worse. If
we endorse the concept that it is okay for the legislature to mandate
disease specific treatment, the mainstream conservative view may be
what is mandated, and that is worse than the current situation.
Currently though most insurance companies won't pay for it in most
cases, it is still theoretically avaialble. It is doubtful that the
mandated treatment is enforceable in most cases due to loopholes
including the big one ERISA. However, the opposite isn't true.
Mandating less treatment probably is enforceable. The "father" of the
Burrascano school of treatment was himself disciplined by his State
Medical Board (though for the most part his "taxes" were paid, there
were still some technical problems leaving him vulnerable. And he was
lucky bottom line, it could have been a LOT worse for him than it was.
We have little or nothing to support our view so we're going out on a
weak limb that can very easily be sawed out from under us.

Reason 2: Writ large this is just a bad idea. Patients shouldn't be
mandating science or medicine. Doctors and scientists have to do it.
Turning to the legislative process is a huge mistake. Think about how
long it takes to write and pass a law. But developments in science and
medicine often occur quickly as do changes in knowledge technique
technology etc. The legislative process can't keep up nor can it
provide for necessary flexibility, laws have to be specific. So we
could get saddled with an antiquated backwards standard of care as a
law and face a difficult process in changing it. No matter how we feel
about what is going on in Lyme, we have to keep the larger picture in
mind, consider the precedents we're asking to be set, how they might
hurt us and consider whether even if we get what we think we want
whether it really helps us? And fundamentally the legislative process
being inappropriate and inadequately flexible, legislators are NOT the
experts. This is a realm that must be left to the experts in the area
who are not patients or god forbid legislators. Not to mention that it
is fundamentally UNamerican to legislate a way of thinking (well at
least it used to be before the unfortunate advent of the extremist
religious right who are trying to use government to be the arbiter and
enforcer of moral and religious views). People have a right to their
opinions right or wrong and we have to respect that realm of free
thought as much if not more in the area of professional expertise as
in the ordinary realms of free speech. It is just WRONG to try to do
this. And dangerous. And as a blanket proposition I do not support it.

This is just NOT the solution to our problem.

Greg you said something about the need for quick action. That has been
said for at least 15 years. And by pursuing demagogically advocated
simplistic sounding and ill conceived actions we haven't taken the
first steps down the long hard path that we need to follow if we have
any hope.

The real question isn't what law is better. The real question is
whether we are going to start pursuing the real solutions now or
whether in another fifteen years, we'll still be pursuing false
promises of solutions and still not have taken the first step. So the
real quesion should be when are we going to take the first step on a
long hard journey and stop pursuing short cuts to nowhere at all?

>On logistics I will not comment, except to say it has been
> > clear to me that all the calls now are primarily to create a buzz for
> > next year. I do not think this has been a hidden agenda as you
> > suggest, but out in the open.

Please show me where it has been out in the open? Maybe your internet
browser shows you the real message behind the words but all I see is
the words about URGENT ACTION to help pass the bill NOW and keep it
from "dying" on every announced "drop dead date."

The above looks like an apologia for the false statements that have
been made repeatedly. I don't know if the statements are false from
ignorance and incompetence OR deliberately misleading people. Neither
is a good thing.

AND IF the agenda is to create "Future buzz" this is a stupid way to
go about it.
 
> It is clear that the rank and file believe that each "action alert" is
> an immediate dire emergency, and that they respond in a cult-like
> manner when calm inquiries are made. This cult-like behavior has been
> on-going bad PR for the Lyme community.

Worse it damages the efforts with the legislators rather than
helping-worse if the goal is to get legislation and I don't agree with
that goal. But if I did the amateur hour bullying approaches would be
the last thing I would want going on while I was trying to do what
really needed to be done.

> It has even been mentioned in
> the press in the last year.

I must have missed it. Can you post it?

>This is separate from the issue of people
> acting on alerts based on inaccurate information - information that
> the parties on the receiving end know is inaccurate.

By receiving end do you mean Lymeland cultists? Or the legislators? Or
did you mean the sending end, that E L and the PAt and others know
their action alerst are riddled with false statements and false hopes?

Please clarify?

> It is also
> troubling that people are asked to insist that the governor sign a
> bill that is represented to be under ongoing negotiation. So the net
> effect is that people are asking Pataki to sign a bill of which the
> language is unkown.

YES this is an excellent point none of us have made recently.

Most people respond to the action alerts ASSUMING that they are
supporting something laudable. If you look at the FAIM website for
example it talks about a lot of things that have nothing to do with
the actual language of the OPMC bill. The sponsor's memo talks about a
lot of things that the bill doesn't too.

So bills with names that sound good are supported or with claims made
about them that don't match the reality (think USA PATRIOT ACT, think
"clean skies act" think "no child left behind" etc).

So we rush ahead proudly in all of our glorious ignorance and often
end up shooting ourselves in the foot. Or opening our mouths and
inserting our feet, all the way up to our thighs.

Unbelievable.

> It would be best if it could be held
> > over so some of the language could be fixed.

I just don't support it. It doesn't really get at what the problem is
in NYS.

> > It's true they got Al Capone on taxes --they got Orens on taxes but
> > then he had real issues with his taxes. They were unable to hang
> > Burrascano on taxes and god knows they tried but in large part
> > Burrascano did a descent job on his taxes and he paid every quarter
> > and documented all the deductions. That is why all the auditors in NY
> > were unable to convince a panel of OPMC judges that the taxes were
> > unpaid and Burrascano lived to see another day. GG
>
> What does OPMC have to do with IRS? Please "explicate".

LOL Greg is using "taxes" as a metaphor.

But one point. Burrascano still had some technical problems with his
taxes. And probably got off easy. Well definitely got off easy
considering how it could have gone.

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