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Fwd: THE MOSS REPORTS Newsletter (06/18/02)

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Note: forwarded message attached.

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--

Ralph W. Moss, Ph.D. Weekly CancerDecisions.com

Newsletter #40 06/18/02

-----------

 

 

 

 

An Anniversary

 

 

On June 3, I marked the 28th anniversary of my career

as a science writer. Back in 1974, Richard Nixon was

still president and I was an energetic idealist with a

freshly minted Stanford PhD. Although I had a lovely

family, I hadn't yet found my life's calling. Teaching

at the college level left me dissatisfied. Since my

early years I had wanted to write for a living. But I

lacked a focus.

 

 

One day I heard about an opening for a job as science

writer at Memorial Sloan-Kettering Cancer Center. The

" war on cancer " was under new leadership, and

Sloan-Kettering was looking for " bright young minds " to

help in the fight.

 

 

I decided I had the enthusiasm for the job, and so I

applied. The head of the public affairs department gave

me a chance to prove my worth: he asked me to write an

article for the employee newsletter. I spent the

weekend with scientific reprints and Stedman's Medical

Dictionary open on the dining room table. The result

was my first foray into medical writing.

 

 

This fledgling effort earned me a much-needed two

hundred dollars and an employment interview with Lewis

Thomas, MD, the president of MSKCC. This was like a

young acolyte being summoned to meet the Pope. Dr.

Thomas was not only a distinguished immunologist but

the author of breathtaking essays on biology in the New

England Journal of Medicine. It was from him that I had

discovered how good science writing could be. (A

collection of his elegantly crafted essays, titled

" Lives of a Cell, " later won the National Book Award.)

 

 

What a disappointment that meeting was! Instead of

matching my enthusiasm, he stared vacantly through a

haze of pipe smoke, resigned to the chores that kept

him away from his writing. Sad to say, after I was

hired, he was no friendlier. He would not even return

my " good morning " in the elevator. I took this

personally until I heard two secretaries discussing his

condescending rudeness. I was learning that heroes

often have feet of clay.

 

 

By contrast, Robert A. Good, MD, PhD, president of

Sloan-Kettering Institute, was compulsively outgoing

and gregarious, the Hubert Humphrey of science. His

face had been on the cover of Time and he was widely

rumored to be in the running for a Nobel Prize. He had

a penchant for unusual ideas and served as mentor to

physicians who would later become some of the most

prominent alternative practitioners, such as Nicholas

Gonzalez, MD, and Charles Simone, MD.

 

 

What pride I felt as I first rolled my Memorial

Sloan-Kettering stationery into my IBM Selectric and

signed my name at the bottom. The world suddenly

treated me with a heightened respect, a reflection of

the institution whose glory I borrowed. I had

discovered what happens when you align yourself with a

powerful institution. I was euphoric. I didn't yet see

the downside.

 

 

Officially, my job was to write one article per month

for the center's newsletter, as well as various press

releases and the research section of the annual report.

But I soon discovered that the position held

responsibilities that were not included in my job

description. My first assignment was to investigate the

background of one of Sloan-Kettering's doctors, William

Summerlin, MD, who had recently been fired for

perpetrating a research fraud. He had claimed that he

could transplant tissues between unrelated individuals

and, to support his claim, had Magic Marker-ed blotches

of black " skin " onto the backs of white mice. A

technician uncovered the fraud by rubbing the rodents'

backs with a swab of alcohol.

 

 

It was feared that Dr. Summerlin was going to implicate

top officials in this canard. My role was to phone

Summerlin's previous employers and (to put it in plain

English) " dig up dirt " on him. I obediently took up

this detective work, little realizing that I might

someday be the object of similar scrutiny.

 

 

I was also handed a hefty folder of unanswered letters

from the general public about unconventional cancer

treatments. On the front, in big black letters, someone

had block-lettered " PSHAW. " Initially, I thought that

this was Sloan-Kettering's collective judgment on

alternative treatments, until I learned that it was the

first initial and last name of my predecessor, Phyllis

Shaw.

 

 

The folder grew even thicker with questions,

suggestions and diatribes concerning cancer. The public

wanted an outlet for its opinions on the war on cancer,

but the prevailing view at Sloan-Kettering was that the

answers would come only from professional scientists.

We were obliged to humor the public because it paid the

bills, but we weren't expected to take their opinions

seriously.

 

 

Although this was how I was indoctrinated, I had

inherited from my father an interest in human nature

and I enjoyed listening to various speculative theories

of cancer. Luckily for me, so did my boss, and he

encouraged me in this direction. One woman tried to

convince me that cancer could be cured by drinking

water that ran beneath a pine forest. She offered to

send me some. There were various weird theories about

gamma rays and the like. About half the letters

concerned a substance derived from apricot kernels

called laetrile, then much in the news. People demanded

to know why we weren't testing or using what they

called " vitamin B17. " Our scientists scoffed at the

notion.

 

 

On my lunch hour, however, I browsed through the local

health food stores, devouring literature about

alternative cancer treatments. It was through reading

these enthusiastic tracts that I first learned about

the world of alternative cancer treatments. My office

bookshelf filled up with works on laetrile, the Hoxsey

herbs and the Gerson diet.

 

 

In the land of the blind the one-eyed man is king. I

knew very little about these treatments but those

around me knew even less. The average scientist knew

nothing at all. So I became Sloan-Kettering's majordomo

of alternative treatments.

 

 

Until 1976, Americans had no federally funded Cancer

Information Service to provide answers to their

questions about cancer, and public inquiries to cancer

centers got catch-as-catch-can answers. Many calls to

MSKCC were forwarded to the public affairs department,

and I became their de facto " answer man. " Soon, MSKCC's

telephone operators had notes taped to their

switchboards stating that " calls about alternative

medicine go to Dr. Moss. " Over the next three years I

answered hundreds of such calls, listening

sympathetically to patients' experiences and problems

and offering ad hoc advice when it seemed appropriate.

Mainly I listened.

 

 

A Trip To Tijuana

 

 

In the spring of 1976, I slipped away from a scientific

meeting in Anaheim, California, and drove on my own to

Tijuana, Mexico, to visit the Cydel Clinic. This was

the Mecca of the laetrile movement. Incognito, I met

with Dr. Ernesto Contreras, Sr., and was struck by his

kindliness. My favorable impression of him was

diametrically opposed to his portrayal in the US media

as a predatory quack. The clinic was like the man, a

serene oasis in a world of toxic conventional

treatments.

 

 

I also talked to some patients who seemed to have been

helped by the treatment. One " terminal " patient told me

that this natural therapy had relieved his intense

pain, which he likened to " someone twisting a knife

back and forth in my throat, " within a matter of days.

" I'd like to take an ax and smash up the FDA, " he said,

expressing such intense hatred for the federal

government that his words seared my brain. Violent

emotions! But I found it hard to argue with the rights

of a terminally ill patient to receive any reasonably

nontoxic treatment of his choice.

 

 

In New York, I had a standard form letter saying that

laetrile had been proven worthless. Imagine my

astonishment when I found out that our most experienced

researcher, Dr. Kanematsu Sugiura, had found that

laetrile decreased the spread of cancer in test mice!

Suddenly, my cozy work world, with its collegial

lunches and Christmas parties, started to collapse

around me. I was not only surrounded by fundamental

dishonesty but was rapidly being dragged into it as an

active participant. My son, who was 10, said to me,

" You cannot go on working for them and against them

forever. " Indeed, I could not. In November 1977, I was

fired after holding a press conference to discuss the

topic of laetrile at Sloan-Kettering. Well, that is a

story for another day.

 

 

Times have changed. Today, the US government puts $100

million per year into the evaluation of treatments that

were scorned as quackery 25 years ago. It has been my

pleasure, for the last ten years, to play a role in

that process as an advisor to the National Institutes

of Health. Most surprising to me personally, in May

1999, I was invited to give the Grand Rounds lecture to

the Department of Surgery at Memorial Sloan-Kettering.

How strange to walk those corridors once again and,

surrealistically, to be applauded by the very

institution that had padlocked my files and had me

escorted out by armed guards decades before.

 

 

What lessons have I drawn from my 28 years as a science

writer? Once we start to shape our writing about

science to accommodate the wishes of doctors, patients

or institutions, rather than the facts, we are sure to

end badly. We must always speak to cancer patients with

a finely balanced mixture of compassion and honesty.

Finally, we must always demand a fair evaluation of all

treatments, conventional and alternative. Only on a

level playing field can the true value of any cancer

therapy be determined.

 

 

ImClone Head Indicted

 

 

In a previous newsletter I spoke about the trials and

tribulations of Erbitux and its manufacturer, ImClone

Systems. On June 12, Samuel D. Waksal, the former chief

executive of the company, was arrested at his Manhattan

home and charged with insider stock trading. A federal

criminal complaint accuses him of tipping off family

members to sell their shares before public announcement

of an unfavorable FDA ruling.

 

 

Like the tulipmania that swept Holland in the 1630s and

ended in the great commodity crash of 1637,

cancer-related stocks like ImClone that were once Wall

Street's darlings have crashed and burned. How did this

happen? Erbitux had a distinguished pedigree. Its

discoverer was John Mendelsohn, MD, now president of

M.D. Anderson Cancer Center in Houston. Vincent DeVita,

Jr., MD, former director of the National Cancer

Institute, was also on the board. Last year, Bristol

Myers-Squibb, a leader in chemotherapy, paid $2 billion

for the rights to co-market Erbitux.

 

 

But pedigree aside, the real measure of a cancer drug

is its ability to extend the lives of patients. Erbitux

was based on an elegant theory, but it failed this

crucial test. The rise and fall of ImClone is a clear

sign of how sober science has become enmeshed with Wall

Street's drive for profits.

 

 

Here at the Moss Reports

 

 

We continue to maintain nearly 200 original reports on

different cancer diagnoses. To find out how we might

help you, please call Diane Galbo at 800-980-1234

(814-238-3369) or order a report online at

www.cancerdecisions.com.

 

 

 

---Ralph W. Moss, Ph.D.

 

 

---------------

IMPORTANT DISCLAIMER

 

 

The news and other items in this newsletter are

intended for informational purposes only. Nothing in

this newsletter is intended to be a substitute for

professional medical advice.

--------------

 

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