| A_Weisman 2004-11-21, 11:20 am |
| GregGerber@hotmail.com (Greg Gerber) wrote in message news:<146041df.0411171810.6156a9f1@posting.google.com>...
> derdrittemann2003@yahoo.com (derdrittemann) wrote in message news:<f2af2263.0411171110.b0db74f@posting.google.com>...
>
>
> with all due respect, dertritteman, perhaps you did not READ what I
> wrote. I immediately agreed your questions about logistics were
> relevant, but commented that doctor education seminars and more
> research would not be sufficient to change the outcome for Lyme
> patients in the near term. I said that politics must be countered with
> politics --and lobbying with lobbying. The logistics are grist for
> important discussion, but the need for political intervention of some
> sort is a given, to me. As long as internal accounting audits red-flag
> Lyme disease and managed care companies actually agree, in public
> documents, that their narrow standards will allow a certain percent to
> get very ill --as long as that is acceptable, patients need to enter
> the political arena to advocate for their human rights.
However they can't enter unarmed, not to mention with poor planning
for the war and the aftermath.
I think the big problem with your analysis as you articulate it now is
that it proceeds from the current situation ignoring how we got here.
IF the science supported long term treatment then it would be possible
to fight treatment denials without resorting to politics.
Politics is NOT the only path to victory. And it is a path fraught
with problems and dangers.
For example, mandating treatment can result in a law such as the one
in CT which in its attempt to mandate a minimum, effectively mandated
a maximum.
It ended up creating more problems than it solved.
Before the law some people might have had difficulty getting more IV
than 30 days. BUT they didn't have problems getting virtually
unlimited oral treatment paid for. What was "red flagged" was IV. I
NEVER heard of a denial for orals. AFTER the law which mandated 60
days of orals, people were cut off after 60 days. The law also
circumscribed the type of physicians who could prescribe treatment.
I'm not sure of anyone it actually helped. Soon after the law came
into effect Dr CR Jones reported that patients were now being denied
long term oral treatment when they hadn't been before.
Why did this happen?
A combination of legislative and lobbying naivetee, a bunch of well
intentioned folks without a clue. And they didn't have the science
backing them up either.
So when managed care interests along with support from doctors from
Yale opposed it, the law came out in line with what managed care
interests and Yale doctors advocated.
Of course that didn't stop Lyme patients from declaring this a
"victory."
A more Pyrrhic victory was "Won" in Rhode Island. This was made
possible by the fact that the Governor's chief aid had a sister
chronically ill with Lyme and had little or nothing to do with the
efforts of Lyme patients or their advocates (who claimed credit and
victory anyway).
The law was better on its face and required payment for long term
treatment. However there were no doctors who would order it in Rhode
Island; thus the Pyrrhic victory.
Lots of energy was expended anyway.
So this law really helped no one.
And that case proves Sir Der's point. Without the doctors to order it,
the law means nothing. And the law didn't change the attitudes of the
physicians. Though it did provide them the leeway to order it IF they
thought it appropriate it (and that is how I understand your current
argument as now articulated) but there were none who agreed with
Burrascano.
And why should they? Burrascano et al have provided NOTHING to back up
their treatments in terms of EVIDENCE of efficacy.
And Steere et al have provided plenty to the contrary.
The ILADS guidelines self published in an obscure vanity publication
don't actually even provide treatment guidelines much less support for
long term treatment in terms of evidence.
> Better research?
Yes absolutely. That is critical. I'm surprised you don't see that
greg.
Managed care could be forced to pay without any legislation if we had
research backing up Burrascano style treatment. But we don't.
And by the way we could be much more succesful politically in terms of
legislation if we had the science to back us up. And some doctors with
some real credibility. And face it, our doctors are way far from the
mainstream of medicine and most lack real credentials and credibility.
And they come to the table unarmed in terms of the real currency of
medical and scientific debate: evidence. EVIDENCE. EVIDENCE.
> In response to the Congressional language of 1994, NIH commissioned
> three longer-term treatment studies: Klempner, Krupp and Fallon.
Not sure you can say that this was in response to "Congressional
language" of 1994.
But this is an example of the unintended effects of legislative
efforts. These studies either directly hurt (killed) us or didn't
really help. And since you're arguing about the short term "benefit" I
would add that a ten year period from what you say was the cause, to
the effect, is not a "short term benefit" helping Lyme patients now.
And I would say that the ten years could have been much better spent
and we'd be much further along in terms of achieving our goals if we
had spent our time and energies in some other way. And we could have
shepherded the process that did occur much more effectively.
Because the studies you cite were signed off on by Lymeland but were
really self defeating, even the ones you argue came out in our favor.
> Klempner showed longer term treatment did not work in 2001, but since
> that time Krupp and Fallon have had the opposite results, showing
> statistically significant improvement with the longer treatment. Yet
> it is only the Klempner study that is enfranchised by managed care.
In the first place let's agree that NONE of these studies addresses
the real issue of long term treatment.
It is clever that you call it "longER" term treatment.
But the length of treatment studied means that the day was already
lost before the first patient was enrolled. And you gild the lilly
when it comes to the study results.
It isn't simply that klempner is "enfranchised" by managed care. It is
that Krupp and Fallon prove far too little. And none of this was ever
a test of "long" term treatment at all.
By definining long term treatment as a little bit more than the
current prevailing standard, what is gained? First neither krupp nor
fallon show that SLIGHTLY longER term treatment was a "cure." At most
they really show some marginal benefit around the edges, which is
dubious in terms of lasting effect and in the final analysis it is
really hard to say that this demonstrates efficacy, in terms of cure
or even lasting improvement or even preventing treatment failure with
disastrous results.
Be honest, what do you think these studies really prove? What is there
that you can take to the bank? You must admit that these are strawmen
for long term treatment. Like the klempner study could only show that
long term treatment failed or what was defined as long term treatment
is enough and no more would be necessary (they don't draw the
distinction between long and longER and don't begin to approach the
question of Burrascano style treatment). Krupp and fallon can only be
said to show that long term treatment (no distinction is drawn between
long and longER) has marginal benefits of dubious value in that the
long run in that there is evidence the effects don't last.
Bottom line all of our energies have resulted in self defeating work.
Why are we asking the NIH to do these studies?
Why don't we do our own?
> The very studies commissioned to answer the treatment question have
> actually unfolded, two to one, in favor of extended therapy.
This is a real overstatement of the results greg and what can be done
with the limited results. And you can't really compare the krupp study
with the klempner study. And krupp and fallon didn't really prove very
much at all and don't really claim to whereas klempner at least makes
grand claims though it is arguable what his study actually proves.
>As it
> turns out, the results are economically unpleasant to managed care,
> and they will ignore it as long as Lyme patients allow it.
Well neither krupp nor fallon actually give us anything to really
counterbalance and effectively refute the prevailing standard. And
none of these stand in isolation. Klempner supports reams of studies,
though those studies might be flawed methodologically and self
referential and subject to many valid criticisms. And that adds to
reams of treatment guidelines in textbooks, therapy manuals and
standard texts.
And what the CDC says, IDSA says, conn's says, and most credible and
widely used reference books.
So it isn't 2-1 for our side. That argument presents a very distorted
and inaccurate picture. One might fairly call it disingenuous given
the level of knowledge of the field that you consistently claim.
What's up with that greg?
It seems a very selective argument, dissonant to the reality of the
picture.
> As you can
> see, the two studies opposing Klempner are not mentioned in the
> treatment protocols of managed care, even today --they choose the
> research they like.
Well fallon is only now announcing and has yet to formally publish all
the results and conclusions in a peer reviewed journal so I don't know
where you expect his results to appear? And the krupp study was pretty
much a lead balloon, what do you really think it proved? How can you
really compare the krupp study and her conclusions as written with
what klempner claims?
Not to mention the REAMS of studies and articles and texts and
treatment guidelines consistent with what klempner claims.
>It is only through political intervention that
> patient voices will be heard. If you want to discuss logistics, fine.
> If you want to say politics plays no role, that is naive.
I think that you're ignoring the realities and presenting a distorted
picture filled with wishful thinking. And ignoring the fact that there
are other avenues to force managed care to pay than legislation. Such
as litigation. But for litigation to work we have to be prepared to
PROVE WITH EVIDENCE the validity of our viewpoint and counter that of
managed care and their reams of evidence.
And our political efforts would be made easier and more succesful if
that were the case too.
Chicken and egg.
And in this case it is clear which precedes which.
> I am happy to discuss logistics all you want. I have problems with a
> lot of the logistics as they have unfolded too, though not necessarily
> in PA, but then, I don't know that much about it.
>
> GG
The big problem is not that you don't know much about PA but that
those self appointed leaders don't know much about it either. As
usual. And what they do know is minimal what they don't know is
massive and critical. The small parts of the picture are insignificant
compared to the larger parts. As they learn some of the basics of
legislative procedure, they still don't understand the politics in a
larger sense. They don't understand why their bill arose only at the
end of a two year legislative session in the lame duck session and
near the end of that. They don't understand real legislative and
political strategy. They don't understand what they're up against. And
they are heedless of the pitfalls of what they're doing, the downside
as in CT. They don't know what their efforts might "achieve."
This is what comes of being reactionary and naive. Yeah they're angry
and I understand that. But angry doesn't mean smart or effective.
Angry doesn't prevent them from being ill used. Or doing much more
harm than good. And doesn't excuse them lying and misleading again and
again or failing to learn lessons from their past efforts and
"achievements."
|