Thank you Dr. Romero, for your insight ....you are
so right.....having been exposed to advertising/marketing in my younger years,
I've always tried to see "things" from two sides.....the company and the
consumer..profit and loss, yours and mine, half full half empty, etc., and like
anything else it's a matter of interpretation and which side of the fence you
are sitting on....and with mirapex it would be
Side 1: making a profit or on Side 2: needing help
from the drug....we've got to read between the lines....I tried to read it as a
PWP needing the help and then I tried to put myself in the place of the company
stockholder...and I found great benefit in both areas depending on MY NEED
(profit or help). In the movie, "Romancing the
Stone," Kathleen Turner says to Michael Douglas. "FOLLOW THE
MONEY" and it's so true....looking at things that way brings a new insight into
it... I do take mirapex, neuroprotective I don't know but
it does work for me on a daily basis...
thanks again...Joan Hartman
----- Original Message -----
From: Jorge Romero MD
To: [log in to unmask]
Sent: 4/7/02 3:40:38 PM
Subject: Re: Tremor and PD/Mirapex/PD
Progression
Dear Terry, Dee, and Parkinsn List:
Mirapex is a very good drug. There are many PWP (like Terry and
others) who
have benefited from it, in the same way that there are many who have
benefited from Permax, Requip and Levodopa. Its efficacy as
an
anti-Parkinson drug is very clear.
My objection is not to the drug. My objection is to the
publicity and spin
that has been given to the recent findings that are at best
preliminary,
trying to paint Mirapex as a proven neuroprotective agent. That
is a
marketing ploy. Yes, the drug companies will inflate the claims
of efficacy
of their drugs, just like Chevrolet will tell you their trucks are
better
than GMC.
The JAMA article is available for anyone to read. Some aspects
of it are
very technical. The investigators were very careful and honest
in how they
worded their conclusions.
I quote directly from the article:
"These imaging data highlight the need to further compare imaging and
clinical endpoints of PD progression in long-term studies."
"These data highlight the need to compare this imaging marker of
dopamine
neuronal loss with multiple meaningful clinical endpoints of disease
progression in larger, long term studies to fully assess its clinical
relevance."
How is it that the press and the media have transformed this into a
claim
for neuroprotection?
Dolores points out that her own reading of the report sounds less
than
conclusive. That is the point. It isn't
conclusive. In fact, some of its
data is outright puzzling since they were unable to correlate the
radioisotope findings with clinical measures of disease progression
which
they themselves chose before the study. The study was well-done
and
planned.
Drug companies will sell you drugs the same way GM, FORD and Chrysler
sell
you cars. They will do everything they can to convince you that
their drug
is the best. They do so with doctors too. Many
doctors will rely on drug
company provided information for their education on new drugs, because
going
to the primary literature is very time consuming.
To assume that drug companies sell drugs for the benefit of patients,
would
be like stating that the car manufacturers sell cars to provide for
public
transportation. They are both selling a product to make a
profit. They
don't have lofty humanitarian motives - they are corporations with
responsibility to shareholders, who also invest in drug company stock
to
make a profit - not to support the delivery of healthcare.
Proving the legitimacy of some claims concerning drugs takes time and
intensive research. The history of Eldepryl (selegiline) in PD
is an
example. The initial DATATOP study suggested that selegiline
might delay
the progression of PD. Theoretical and animal models seemed to
support such
claims. Later, longer term follow-up studies disproved that
claim in
humans. But, even to this date, there is some interest in
reviving the
alleged neuroprotective effect of selegiline. Yet, when the
initial studies
seemed to point in that direction, the drug company pushed the drug as
hard
as they could - and almost every PWP ended up taking selegiline for a
few
years. And Somerset and Sandoz took the profits to the bank with
a smile.
The market for antiParkinson drugs is fierce. There are claims,
and
counterclaims of better efficacy, fewer side effects, and the most
recent
words are "avoiding toxicity" and "neuroprotection." The
dopamine agonist
companies would like to "dethrone" levodopa as the gold standard for
initial
treatment. They are ganging up 3 to 1 against levodopa, but they
are also
competing with each other.
All I urge is caution: careful analysis of claims. When there
is
controversy, listen carefully to both sides. When there is a new
claim that
sounds too good to be true...it probably is.
Every new finding in research, however, even if done with drug
company
sponsorship, is capable of contributing a brick to this
castle. That is how
progress is made in science - brick by brick.
I still have my eyes open hoping to find a piece of real-estate in
Florida
where I will find the Fountain of Youth.
Jorge Romero, MD
----- Original Message -----
From: "Terry Bowers" [log in to unmask]
To: [log in to unmask]
Sent: Sunday, April 07, 2002 10:55 AM
Subject: Re: Tremor and PD
Dear List,
And as far as Mirapex goes, I thank God for the researchers who worked
the
problem, Pharmacia and their shareholders who foot the bill, the
doctor
who
prescribes the Mirapex and the pharmacists who fills the prescription.
I
would gladly pay twice the price of one hundred and sixty dollars
every
month for the relief and benefit I receive.
Sincerely,
Terry Bowers
----- Original Message -----
From: "Dolores Buente" [log in to unmask]
To: [log in to unmask]
Sent: Sunday, April 07, 2002 7:50 AM
Subject: Tremor and PD
Dear Jorge,
After reading your post in regard to mirapex and it's
effectiveness or
(ineffectiveness) in neuroprotection, I am prompted to
respond. It
seems
that the report of the studies done in this area have been
highly
promoted
and would lead to a general acceptance of the effectiveness of
this drug
(mirapex) as a neuroprotectant. Of course, with this
perception, the
sales
of this drug will undoubtedly increase dramatically.
Since this study was carried out by the drug company which
manufactures
and
sells the drug in question, it leads to doubts as to it's
unbiased
conclusions. I have read the published report on the
study and the
wording
sounds vague and less than conclusive. I feel that it
would be a
travesty,
if in fact it could be true, that the drug companies who are
selling
drugs
to
those who are so desperate for the glimmer of a hope could stoop
to the
level
of promising something that is less than authentic.
I take Requip now and am doing so because I was told
that it will treat
my
symptoms and enable me to delay taking leva-dopa. I
made this decision
based
upon my doctor's recommendation, my reliance on his informed
medical
opinion
and the belief in his genuine concern for me that he would advise
the
best
treatment possible for my disorder. To think that drug companies
would
perform otherwise just to boost their sales to become even richer
is not
acceptable. Now the question is: how is the legitimacy
of this finding
proved or disproved.
Dee
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