Dr. Fink:  Thank you for your elaboration on today's medical practices.  I do appreciate your perspective  and your experiences concerning such life and death issues - which is precisely what I need as we move along on our "Quest for a Cure".  I would like to explain that just because Judd and I are on a QC and we express interest in the merits of Dr. Garg's professed works, does not mean that we see Dr. Garg as promoting a "cure" or that he himself is promoting his research and developments as a "Cure" - in fact he considers his work only as a definitive therapy and realizes the medical realities of the scientific process.  I have not wanted to get into a discussion of defending Dr. Garg - more to the point is how can we as patients and doctors work in cooperation, collaboration, and with verification rather than competition, egotism and contention.  I hope to give such issues and efforts more time in my writings in days ahead.  Your cautions and viewpoints are well taken and will be given every consideration as we work to keep our lives productive, meaningful and healthy in the struggle against the Parkinsons.(Such candor is rarely found in the M.D.'s we have dealt with in various provider settings).  I am replying to some of your statements made within the text in bold type: 

On 19 Dec 2003 at 20:52, callie judd wrote:

> it happened with
> Debakey in South Africa and many pioneering medical advancements and
> right now the DBS that goes on everyday - does so because of France's
> willingness to venture into it and it is certainly not guaranteed to
> give good results-patients are just being led into it (learning as
> they go), many being hurt and even dying as a result, but you don't
> hear those stories in the news...and as far as "peer review" - when it
> comes to my husband looking at his survival waning away, inch by inch,
> (and medications had him "on the way out" earlier this year) - he
> really couldn't give a damn about peer review - it's the reality of
> what he has presented before him to add time to his life that he makes
> his decisions about....there is much to be discussed about the whole
> process involved in this - which I hope to write about - my husband
> and I have decided to go for something that may help advance a real
> remedy (not worried about that word "cure" either), whether he can
> survive it or not (knowing we have to rely on meds in the interim) -
> John Ritter's little girl stood up with arms stretched upwards and
> asked God to "drop him, drop him!" and when told "it doesn't work that
> way" she replied "but what if it did, and we never tried"....the
> wisdom of a child...we have gone 18+ years - there is a distance to
> go...all we ask is for the help to get there...Marie and Judd

Marie,

DeBakey was not located in South Africa, he was in Houston, Texas. My mistake, I apologize. 
Christiaan Barnard was the South African surgeon who did the first heart 
transplant; and, while is certainly was surprising, it was not "curative".  In 
fact, the procedure was ultimately not successful and it remains a somewhat 
questionable procedure today.

There have been many "miraculous" procedures that have been developed 
around the world without benefit of good, controlled scientific research, 
especially in those diseases which are not fully treatable by scientific 
methods.  Many of these methods are harmful, and even the ones which are 
not harmful often result in the expenditure of large amounts of money (which 
is not usually covered by insurance because the "treatment" is not 
scientifically valid).  People or groups who push these procedures often claim 
that "organized medicine" is "against them" for financial reasons, but when 
one looks at this claim, one should see that if a treatment was really effective, 
it would be used by everyone and the "inventor" would indeed reap the 
financial benefits many times over. I,too, feel this is how it SHOULD be - but money breeds competition and CAN result in progress being impeded, as history reveals.

Below is pasted a short article which I wrote several years ago about another 
doctor (a Dr. Burzynski) who claims to have a "cure" for another dread 
condition (brain tumors), and how such claims need to be looked at very 
carefully: (such tragic and deplorable situations need to be prevented  - as corruption is in every phase of life.  As time goes by and technology allows better methods of prevention are developing.  The best safeguard against such happenings is for information and full, truthful disclosure be available to ALL persons, as each person is ultimately responsible for his/her own health conditions (again corruption in communications becomes a problem)

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BURZYNSKI ET AL, MY BASIC POSITION

With the recent repeat run of questions regarding the Burzynski
treatment ("antineoplastons"), I have experienced a new set of flames by
certain members of this List.  My responses to those flames, if any, have
been made to the individuals and have not been posted to the List.  I
thought, however, that it was time for me to write a little note here
about my attitudes towards "alternative therapies" and people like Dr.
Burzynski.  thank you for doing this

I am a scientist.  What I know about the treatment of disease is based on
research done by myself and others and part of many years of scientific
labors by many people.  I have seen many positive changes in the treatment
of brain tumors and other neurological disease/injury in my 30-plus years
of work in this field.  I also realize that there are still far too many
conditions that we cannot cure (gliomas, brain stem tumors, and other
conditions).  I am confident that, with the advance of science, we will
eventually have answers to these currently incurable conditions.  In the
meantime, our job is to alleviate suffering as much as we can.  Exactly what Dr. Garg has communicated

I am not a neurosurgeon for the money.  Most of my colleagues in
medicine feel the same way.  Yes, we get paid for what we do; indeed,
everyone must earn a living in order to support onself and one's family. 
Some physicians make a great deal of money, but those who do usually do so
because they put in long hours and much effort into their practices.  Even
those of us who are wealthy (and I am not one of these!) do not approach
the incomes made by some entertainers, sports figures, and others who some
might say do less to earn their incomes. Dr. Garg's expressed sentiments - he used his own funds for his research and development

I do not begrudge any physician the ability to make a good income.  On the
other hand, I have never refused to care for a patient because they could
not pay; and I have certainly not made a patient pay me simply for going
over some records to decide if I would accept them in my care.  When doing
research (and I have done my share), I have always done that work with an
affiliation to a major University or other teaching institution, and the
work was supported by grants, either Government or private in origin. 
Patients were not charged for treatment which was experimental or
research-oriented. We certainly have been   I do not believe that it is ethical for patients to
pay for treatment which is experimental and I do not support people who
profit from experimenting on patients. Judd and I see this happening routinely, especially when government funding is involved, based on personal experience of  procedures and actions taken by doctors involved in research settings and government facilities.  Almost all of Parkinsons treatment could be of an "experimental" nature, but we also do not begrudge reasonable charges. However, the patient still ends up with undue burdens of partial or over payment due to the system in place today. 

There have been many instances where people have advocated new
therapies for "dread" illnesses.  In the late 1950's when I was a
medical student, my best friend, a young man who was but 20 years old, was
stricken with testicular cancer and, after surgery and the
state-of-the-art treatment for the time (testicular cancer is now highly
curable with modern chemotherapy), he subjected himself to a treatment
called "Krebiozen", a substance developed by a man whom was later shown 
to
be a charlatan.  Sadly, this man attracted the interest of Dr. Andrew Ivy,
a Nobel prizewinner from the University of Illinois, and, by connecting
Dr. Ivy's name with Krebiozen, succeeded in profiteering off of hundreds
of thousands of cancer sufferers before "skipping the country" with his
ill-gained millions, leaving his patients with their disease.  Many of
these "miracle cures" had their "testimonials" (of long survival or
"cure"), but careful scrutiny, using scientific methods of laboratory
analysis often proved that there was no cancer to begin with in the
"cured" patients. Sadly, in the case of my friend, after his parents
depleted their savings for the Krebiozen, Malcolm died in pain at our
University Hospital, barely after completion of his sophomore year in
medical school.  Our graduating class yearbook was dedicated to him. We have encountered such unethical practices-we do appreciate government's efforts to keep this from happening - individual and public education is a necessary element for prevention too.

When scientists criticized the nonscientific aspects of Krebiozen and also
criticized the financial aspects of Dr. Durovic (the "inventor"), people
literally "came out of the woodwork" to accuse "organized medicine" of
trying to "block a new treatment" because such treatment "would cost the
medical establishment money".  This is a common thread among those who
espouse these "new cures" with almost religious zeal. When Dr. Durovic
left the country with his money (and Dr. Ivy was disgraced), the
"testimonials" stopped. Many people live in fear and ignorance of facts - and then emotions are involved too...

In the seventies and early eighties, another "miracle cure" came
around.  This one was "Laetrile", an extract made from apricot pits,
which contained a small amount of highly toxic cyanide.  It was later
called "Vitamin B-17" to avoid inclusion as a drug by the FDA.  When
Laetrile was finally tested by independent laboratories, it was found that
many specimens contained no active ingredients, while other specimens
contained levels of cyanide which, in children, could be very toxic and
even fatal.  Laetrile was sponsored by a Dr. John Richardson, whose
practice was right in the next town from where I practiced as a
neurosurgeon, and Dr. Richardson's patients came from all over the country
to receive the Laetrile injections.  Dr. Richardson had a deal with a
local motel where the patients stayed, and there was hardly a week when
one or more of these patients, often from a long distance away, would be
brought to the Emergency Room of our hospital in a terminal condition from
rapid spread of their cancer (Dr. Richardson could never qualify for
hospital privileges and could not admit his patients to the hospital).  I
cared for some of these patients during their terminal stages (many of
them had metastases to the brain and/or spine), and they all said that
they were "cured" by the Laetrile, and that what was going on at the time
was due to "something else".  I also, interestingly, ran into several
patients who developed non-cancer-related conditions while in the area for
Laetrile treatment; and, while they were receiving care for that
condition, tests revealed that there was no evidence of any cancer, or
that cancer had ever been present.  I was never able to obtain biopsy
evidence from Dr. Richardson in those cases.

Dr. Richardson eventually, I believe, ran afoul of the legal
authorities (I am not sure whether it was medicine-related or
tax-related), but he eventually closed his practice and I believe he
died some years ago.  When the FDA and other University facilities
attempted to test Laetrile, no beneficial effect was ever found (when the
patients actually had proven cancer), and the potentially toxic effects
were substantiated.  I still occasionally hear of someone touting this
substance, but it is no longer a major player in "alternative medicine".  The FDA is essential and we would like to see more intervention with new ideas on a cooperative and preventative level.  (Dr. Garg follows FDA guidelines - FDA "approval" is pending with time.  It seems to Judd and I that FDA is used as a "guarantor" without people really realizing what is involved (I know I don't fully, but will before Judd participates in any further procedure)  We watched the medical providers follow every required protocol for using an off-label drug this summer - but Judd still almost died due to how the doctors "followed procedure" rather than dealing with him as an individual with value.  
Dr. Garg has no intention of working outside the established medical system - except he is "patient-centered".

The common thread in many of these "miracle cures" is the following: thank you for this

1. The method or "treatment" is *proprietary*; i.e., offered only by
one person or institute.

2. It costs a lot of money and payment is usually required to be "up
front". N/A with Dr. Garg

3. The work is not being done through an established University or
Government grant.  Such work (through Universities or grants) is
usually free to the subjects.  not what we have found - DBS is not free is it?

4. The publicity for the work is mainly through "testimonials" and not in
accepted, peer-reviewed scientific journals.  I recently reviewed some
work published in an overseas journal about a new method of treatment of
another "dread disease" (Parkinson's disease) and found that the "new
method", being advanced by a proprietary researcher, was available only at
the researcher's proprietary facility and was very expensive.  There had
been a number of articles in this journal attesting to the validity of the
work, but when I finally got a copy of the journal in question, I
discovered that it was owned and published by the researcher himself, and
that he was the basic "peer review" person! N/A

5. If anyone attempts to question the motives of the proponents of
these new "cures", the responses from the "testimonial people" are
vigorous.  We (the critics) are merely trying to "preserve the profits of
the medical establishment" and we are persecuting Dr. A or B because he is
threatening us (in orthodox medicine).  It is a "conspiracy" to prevent a
new cure from being brought to the public. Why are people so quick to
question the motives of scientists?  If someone found a cure for cancer
tomorrow, don't you think that most of us wouldn't immediately start using
such for our patients as soon as it was shown to be safe and effective. 
That's what research is all about. The public has many "emotionally" reactive people - much frustration is born of confusion and conflicting methods/attitudes offered by the doctors themselves - that's why I advocate cooperation and sharing of information (a commentary on the radio yesterday expressed that the medical community is still in the 1800's pertaining to use of communication technology, which we too have witnessed due to "legal issues" - that concern for money over "patient-centered" needs...)

There are many diseases and conditions which, to date, are incurable. I
cannot cure glioblastomas, brain stem tumors, metastatic melanomas. All of
the orthodox medical armamentarium to date is useless against these tragic
conditions (for cure; we can certainly help temporarily).
 When a patient wants to try "alternative treatment" under such
conditions, I never attempt to block such, as long as they also
consider the traditional treatment which may be helpful and which will not
cause unnecessary pain or harm.  The destruction of a family's financial
resources (by an expensive, unproven treatment method) is just as severe a
side-effect (for the family) as is a reaction to toxic chemotherapy or
radiation damage. so true

If therapies such as Dr. Burzynski's "antineoplastons", Essiac tea,
shark cartilage, angiogenesis inhibitors, immunotherapy, etc., have
value in the treatment of brain tumors, then it will be shown through
scientifically-valid research.  Such research will be financed by grants,
either private or public, and not by the savings of middle-class and poor
families who are desperately trying to salvage a few weeks or months of
life for themselves or a loved one.  I would not take my family to many of
these schemes (nor would I accept them myself); and I would advise my
patients to avoid some of these as well.  If I am asked for my opinions
concerning these "cures", I will give my honest reponses, flames or no
flames.  And I will not be drawn into a "game" of invective and "blame" by
the devotees.  As I have said before (and others disagree), medicine is a
science, not a religion, and the eventual cure for malignant disease will
come from scientific fact and not from "belief"!
Dealing with emotional issues, I would hope you realize that any beneficial religion, involving a loving God, encompasses and encourages understanding of scientific facts and keeps them in perspective and balanced with beliefs...

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I wish you all the best, but repeat that I think that you are headed in a 
direction which is not going to be fruitful for you and your family.  I see your judgemental statement for what you "believe" from your past experiences.  Dr. Garg has a belief that "there is no end to UNFOUNDED doubts" - lets give the time and effort to investigate what he has to offer, so any doubts will have SPECIFIC FOUNDATION.  I have a belief that the TRUTH  will prevale and is why mankind has progressed thus far in its health care (and Judd will need the Truth before he proceeds with Dr. Garg, as Dr. Garg feels)...Thank you for your time and your correspondence!     Marie Judd 
p.s. Would you interpret Ex Tristitia Virtus?

Best,

Bob

Robert A. Fink, M. D., F.A.C.S., P. C.
Neurological Surgery
2500 Milvia Street  Suite 222
Berkeley, CA  94704-2636  USA
510-849-2555     FAX: 510-849-2557
<http://www.rafink.com/>
"Ex Tristitia Virtus"

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