GrannyBarb's Bone Marrow Transplant
GSC did not have a
commitment to cancer therapy. Indeed, we were so concerned about the risk of
going into the cancer therapy market as a small company, we decided to partner
with other companies and form a separate entity, Oncogen, as a safer
strategy. Furthermore, the "cocktail" of anti-T cell reagents used to
remove T cells from patients' bone marrows came from a number of different
sources, inlcuding those where no deals or commerical rights had been
obtained. There was simply no viable product that could have stemmed from the
Hutchinson's cocktail. Yet the Seattle Times chose to put side by side a time
line showing the changing value of GSC stock held by Hutchinson investigators,
including now Nobel Laureate E. Donnell Thomas, coupled with events occurring
at the center. The strong message was that the center's scientists were being
driven by greed, when in fact they were driven by outstanding scientific ideas
and true love and compassion for their patients. I just wish the journalists
doing such damaging writing could be held accountable to the truth.
The fact that this kind of scurrilous trash is being considered for a big
journalism prize is really shocking to me.
Edward A. Clark, Ph.D.
Professor of Microbiology
and Immunology
University of Washington
Seattle
---
I've worked on clinical trials for more than 22 years, which including stints
in both cancer institutions cited by Ms. Landro. I also have a keen interest in
how health-care issues are reported.
Sensational reporting on only parts of a story from 20 years ago is obviously
absurd. Unfortunately, many people who read these articles in the Seattle Times
translated the reports to mean that many of the cited problems with trials are
problems at the Hutch today. This is far from the truth. Subsequently, as
Ms. Landro reported, reputations were damaged and people were hurt.
There is no doubt that there is a role for the media to bring problems
concerning clinical trials to the nation's attention. However, it needs to be
done in a more professional manner than the Seattle Times's series. The
Hutchinson center is by far the most ethical health-care institution I have
worked in.
Stephanie Mehl
Seattle
---
As someone whose mother died in 1993 while participating in one of the
experiments at the Hutch that was the subject of the Seattle Times's article, I
disagree strongly with Ms. Landro's accusations, and believe the articles to be
fundamentally true and courageous.
In support of her arguments, Ms. Landro notes that she had a positive
experience at the Hutch when she received a bone marrow transplant in
1992. While this may be true, it does nothing to undermine the legitimacy of
the Times story about many patients, including my mother, who were misled or
not given critical information when deciding to participate in the clinical
trials in which they died. In my mother's case, she was promised a rescue drug
that, it was hoped, would allow her to tolerate what was otherwise a lethal
dose of chemotherapy. But she was not told that the drug was not available in
intravenous form -- the only form she could tolerate.
Ms. Landro also argues that because other research institutions were conducting
studies in the 1980s that were similar to the T-cell depletion experiments at
the Hutch, the Hutch must have done nothing wrong. She does not discuss how
those other institutions carried out their studies, but if they, like the
Hutch, were failing to inform patients of the risks of those studies, and of
less risky alternative treatments, hopefully they will come under similar
scrutiny. She also notes that prior investigations of certain of these
experiments found no wrongdoing, but the more detailed analysis in the Times
articles shows these investigations to be superficial, at best.
The numerous articles that have been published in the last few years
documenting the problems with and dangers of clinical research have indeed
caused some skepticism. Ms. Landro worries that this will have a chilling
effect on clinical research. Perhaps. But the fact remains that studies have
shown that most people participating in Phase 1 drug studies -- which are
designed for sole the purpose of determining the toxicity of the drug being
studied -- participate with the hope that the "treatment" will make
them better.
Clinical research is, of course, vital to medical advancement, but noble goals
do not justify careless means. The Times articles exhaustively documented that
in certain clinical cancer trials at the Hutch, patients were not fully
informed of known risks of the experiments in which they died, and were not
given full information about alternative therapies.
Chris Addicott
Seattle
(Mr. Addicott is a business and real estate attorney, and is the author of
"Regulating Research on the Terminally Ill, a Proposal for Heightened
Safeguards.")
---
As a recent transplant patient treated at the Hutchinson last year, I can tell
you I have the utmost respect for the oncologists and support personnel. I was
part of a new clinical trial for multiple myloma that uses a new protocol to
try to reduce not only the return of the cancer but also the mortality from
graft vs. host disease. It is an ongoing battle to find better ways to treat
cancer and reduce the toxic side effects that still kill many patients even
today.
William N. Stokes, D.D.S.
Roanoke, Va.
---
As a cancer survivor and someone whose interest in medicine takes several forms
-- such as establishing philanthropic ties to institutions -- I applaud
Ms. Landro's article. The media has long been known to favor the sensational
over the factual. But when it comes to reporting on medical research trials,
journalists must be careful to think about the second and third order of
consequences. If patients become too frightened by irresponsible journalism,
all of us suffer without the valuable information those trials afford the
medical field. The more we are able to learn, the more lives will be saved in
the future.
Amy Perella
New York
---
Credit goes to Ms. Landro for setting the record straight on what is best
described as shoddy reporting by the Seattle Times in relationship to the Fred
Hutchinson Cancer Research Center.
Over the past 20 years, I have had the honor to work with many physicians and
scientists at the Hutch. To a person, they are impeccable individuals who are
devoted to their research and dedicated to the patients they treat. Their
clinical innovations have saved countless lives in a field that has
historically had dismal results.
Unlike the investigators at the Hutch, the Seattle Times reporters appear to
have started with a conclusion, generated a hypothesis, misrepresented the data
and concluded what they had always assumed. This is not the scientific method,
nor should it be considered journalistically acceptable behavior.
Roger W. Evans, Ph.D.
Rochester, Minn.
REVIEW & OUTLOOK (Editorial)
Tort-Lawyer Journalism
03/27/2002
The Wall Street Journal
A18
(Copyright (c) 2002, Dow Jones & Company, Inc.)
Any significant challenge to the accuracy or fairness of an entry, such as
published letters, corrections, retractions, as well as responses by the
newspaper, should be included in the submission.
-- from Pulitzer Prizes, How to Submit an Entry
The other day we devoted nearly a complete letters column to a lecture on our
journalistic responsibilities from Michael R. Fancher, executive editor of the
Seattle Times. He rambled on about this and that "irony" in an attack
by our Laura Landro on his newspaper's series "Uninformed
Consent," which is reportedly a finalist for a Pulitzer Prize.
The biggest irony, it seems to us, is that we published Mr. Fancher's Letter to
the Editor. The Landro piece to which he objects is an elaboration of a Letter
to the Editor she submitted to the Seattle Times a year ago; the Times refused
to publish her views in its letters column. If it had, according to the rules
quoted above, it would have had to include her letter with its Pulitzer
submission. That the spirit of this rule can be evaded by not publishing a
strong challenge is an irony the Pulitzer Board might want to ponder.
The burden of "Uninformed
Consent" is an allegation of improper paperwork in medical studies
done nearly two decades ago at Seattle's Fred Hutchinson Cancer Research
Center. The "informed consent" forms did not describe the risks of
the experimental procedures, it argues, and 80 of 82 leukemia patients
died. The dead patients are not in a position to explain what their doctors
told them or what was in their minds in consenting. The forms are written for
lawyers, and contingency-fee lawyers are now suing the center on behalf of the
patients' heirs.
The suits were not filed, Mr. Fancher pathetically explained, until after the
expose was published. Yes, the ambulance went by back in 1985, and was pretty
much forgotten until the Times dug up the tracks, along the way applying to the
older trials today's medical knowledge and informed-consent standards. Even
accepting at face value Mr. Fancher's explanation of his reporter's role as an
intermediary between heirs and lawyers, what we have here is an example of
tort-lawyer journalism.
Journalists often find themselves in alliance with the plaintiff's bar because
both are propelled by the evidence of dramatic anecdotes. It scarcely matters
that carefully conceived experiments find that, say, the morning-sickness drug
Bendectin does not cause birth defects, or that silicone breast implants do not
produce auto-immune disease. Wave a deformed child or suffering implant patient
before a reader and you have a headline-grabbing story. To the plaintiff's bar,
you also have a potential class-action jackpot.
In medical research this is a heavily tilted game. You can find anecdotes about
the patient who was injured by an experimental drug. You cannot collect
anecdotes from patients who would have been helped by the same drug but were
denied access to it because of safety fears. The Seattle Times series largely
concerned a failed medical experiment. Doctors had reason to hope that removing
T- cells from bone-marrow transplants would stop graft-versus-host reactions;
instead they found that such transplants usually did not help (though they are
still used in certain applications).
So we now have heirs and their lawyers to speak for leukemia patients who were
not helped during one medical dead end. But we typically would have no one to
speak for leukemia patients who benefited from the larger thrust of the same
research. This is where Laura Landro comes in.
In 1991 she was diagnosed with chronic myelogenous leukemia, a dread form of
the disease. She researched the disease and its treatment, including the T-cell
depletion experiments of which the Times wrote years later. Though a resident
of New York with several excellent cancer centers, she chose to travel to
Seattle to be treated at Hutchinson. The marrow transplant worked, and she went
on to write a book, "Survivor: Taking Control of Your Fight Against
Cancer."
According to Mr. Fancher's idea of journalistic ethics, this makes her unfit to
write about the issues raised by his series. She not only succeeded in her
fight with cancer but established herself as an assistant managing editor of
this newspaper. But since she owes her life to the center, she is biased in its
favor. She replies, "This is insulting, patronizing and also, frankly,
sexist -- as if I am some bubbleheaded woman who can't separate emotions from
professionalism."
Mr. Fancher finds no bias, however, among heirs with a potential financial
interest in speculative lawsuits about deaths back in 1985. But for the record:
The Seattle T-cell depletion experiments were part of a national and
international trial; Hutchinson was the first center to discontinue its part of
the trial. The disgruntled former employee who was the principal source of the
Times series also complained to medical authorities, but a two-year
investigation by the National Institutes of Health found no material ethical
violations. A letter from the Institute's Office of Protection from Research
Risks can be found on the center's Web site.
We are concerned with this issue on two levels. One is journalistic
professionalism; it is not a credit to our craft that "Uninformed Consent" has already won several journalistic
awards. But even more seriously, we have long felt that medical research needs
to be liberated, not inhibited. Some experiments will fail, but more patients
will suffer if medical advances are tied up in lawsuits or medical
bureaucracies.
We are on the side of patients who need and want advanced, if speculative,
technologies -- that is, of the patients for whom Laura Landro speaks so
eloquently
REVIEW & OUTLOOK (Editorial)
Righteous in Seattle
04/01/2002
The Wall Street Journal
A12
(Copyright (c) 2002, Dow Jones & Company, Inc.)
The Seattle Times' executive editor, Michael Fancher, has responded to our
editorial last Wednesday criticizing his newspaper's cancer journalism by
demanding a correction.
He says we were wrong to report that the Times didn't submit as part of its
Pulitzer Prize entry a critical letter from our Laura Landro. While the Times
didn't publish or submit her letter, he says, it did submit a letter she wrote
to the Columbia Journalism Review. They ask us to believe that other
submissions were just more compelling than one from a top-flight journalist
who'd published a book on surviving cancer. Other Times editors have peppered
the media gossip site of Poynter.org with similiar claims
We're happy to share with readers this insight into Mr. Fancher's standards of
accuracy. Ms. Landro's original letter to the Times, the one it refused to
publish, ran to about two-and-a-half pages. The letter that CJR ultimately
published was slashed from roughly the same length to two paragraphs. This is
the letter Mr. Fancher brags that the Times submitted to the Pulitzer
judges. By the way, Columbia University administers the Pulitzers, so any
editor with a room temperature IQ knows you'd better submit anything critical
from its Journalism Review.
All of this only reinforces our view that what really needs correcting is
reporting standards in Seattle. The rest of the press corps seems to be
treating this as little more than intra-media spat, as if it's rude to
challenge a fellow journalist's work. But they aren't addressing the substance
of Ms. Landro's critique.
Readers who want to see Ms. Landro's letters in their entirety, as well as
Mr. Fancher's note to us and an independent scientific review of the Times'
cancer series, can find them on our Web site, OpinionJournal.com
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Copyright © 2000 Dow Jones & Company, Inc. All Rights Reserved.
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Some thoughts on the Uniformed Consent articles
Arthur Flatau flataua@acm.org
I originally wrote the below in a message to the BMT-Talk mailing list, shortly
after the articles were published in the Seattle Times.
The authors of these articles do not appear to really understand BMTs,
or how clinical trials works. They take items out of context and use
them to support their views. It certainly seemed to be the case that
there was the appearance of conflicts of interest between Hutch
doctors' financial interests and the interests of their patients, but
it did not seem to me that there was a "smoking gun" polant
o
Bloodwork for the first section of the story
o
Bloodwork for the second section of the story
o
Bloodwork for my stay in the BMT unit
o
Pathology workups from St. John's Mercy Medical Center 1996-97
o
Pathology workups from M D Anderson through Feb, 1996 and initial slides from St. Luke's Hospital
o
Bloodwork for the Post-BMT section of the story
o
Biopsy slides, 1994
o
6 months post-BMT workup
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