The Cancer Industry:
The Classic Exposé on the Cancer Establishment
New Updated [1996] Edition
1996 by Ralph W. Moss, Ph.D.
Published by Equinox Press
Note: This section concerns The Office of Technology Assessment
(OTA) 1990 Report on Unconventional Cancer Treatments. Because
of its length we have broken it into two files. This is the first
of the two files.
Happily, the OTA Report itself is available online from the OTA
site for 1990. (OTA itself was put out of business by the U.S. Congress
in 1995).
1. The OTA Report
The most momentous week in the modern history of cancer alternatives
began on July 15, 1985. As will be described in this book [i.e.,
The Cancer Industry], it was during a few fateful days that two
of the leading alternative cancer clinics in North America- that
of Dr. Burzynski of Houston, Texas and of Lawrence Burton, Ph.D.
of Freeport, Bahamas-were raided by government agents. Burzynski's
papers and records were seized by the FDA, never to be returned.
Burton suffered an even more frightening ordeal: his Immuno-augmentative
Therapy (IAT) clinic was physically padlocked by Bahamian authorities,
acting at the behest of U.S. health authorities. (For more on Burton
and IAT, see chapter 12). Burzynski and his patients fought it out
in the courts, which provided some legal relief. But Burton's patients
took their struggle directly to Congress, which turned out to be
an even more effective strategy.
The Congress they encountered in 1985 was hardly friendly towards
alternative cancer treatments. But Congressmen get cancer, too,
and were fascinated to hear their constituents' stories of the unusual
treatment in Freeport. Also, Congress' confidence in the war on
cancer was waning. As the years rolled by, the elusive cure never
materialized. By 1985, Congress was in the mood for change.
Burzynski never stopped treating patients. But the IAT clinic remained
shut for months, disrupting a treatment that many believed was saving
their lives. In face-to-face encounters, constituents made a compelling
case to Congressmen to help reopen the clinic.
Rep. Guy Molinari (R-NY) was one of these representatives. A reporter
at the Staten Island Advance wrote an illuminating series on the
closure. (Her husband was a Burton patient.) Intrigued, Molinari
flew down to Freeport. In January, 1986 he held tumultuous public
hearings in lower Manhattan. Shortly thereafter, the Burton clinic
reopened.
But matters didn't end there. On June 27, 1986, Molinari and 23
other Members of Congress formally requested that the Congressional
Office of Technology Assessment (OTA) carry out a study of Dr. Burton's
treatment. Similar requests were received from Senator James Abdnor
(R-SD) and Congressman Matthew J. Rinaldo (R-NJ). An additional
14 members of the House and Senate subsequently endorsed Molinari's
original letter, bringing the total number to 40. Most of these
were also inspired by constituents taking the treatment.
In his letter to Dr. John H. Gibbons, director of the OTA, Molinari
and his colleagues requested a comprehensive evaluation of the
Bahama-based treatment. While there has been much controversy revolving
around the efficacy of IAT, the truth of the matter is no one at
this time can say with assuredness whether IAT works or not, they
said. The result of OTA's investigation may open a new door and
possible avenue of hope for thousands of terminally-ill cancer patients.
Later that summer, Rep. John D. Dingell (D-MI), then the powerful
chairman of the House Committee on Energy and Commerce, also wrote
to Gibbons, requesting a report on alternative cancer treatments
in general. Some [alternative treatments] are offered by respected
members of the medical community, he wrote, and others by what
many would term charlatans. Many of these treatments may be without
benefit, some may actually be harmful, and some, probably a small
number, may have value. However, there is a general lack of objective
information. (letter of August 12, 1986).
Dingell asked that his own request be merged with Molinari's and
that OTA use the Burton IAT treatment as a case study of the general
issues involved. In September, this project was approved by OTA's
oversight body, the Technology Assessment Board (TAB), of which
Dingell himself was a member. OTA promised the case study on IAT
by late 1987 and a final report on alternative treatments by the
summer of 1988.
The OTA (which was dismantled by Congress in 1995) had an excellent
reputation for objectivity. It has been established in 1972 to provide
political leaders with clear, objective, and unbiased information
on technical issues. Over the years, it had conducted many controversial
studies, but this was to be their most controversial ever. Most
members of the alternative cancer community were guardedly optimistic
about the choice of OTA to conduct such a study. They foresaw a
possibility that OTA would expose a cancer coverup, the way that
a respected Justice Department Attorney, Benedict Fitzgerald, had
done for a similar Congressional investigation in 1953.
The OTA had also carried out a number of other studies that augured
well, including one on the question of controlled clinical trials
that ended with a call for a greater emphasis on cancer prevention
(OTA-BP-H-22, August, 1983). The author of those words was Helen
Gelband, who was now appointed Project Director of OTA's study on
unconventional cancer treatments.
OTA began by appointing an 18-member Advisory Panel for the project.
Rosemary Stevens, Ph.D., a historian of science at the University
of Pennsylvania who had worked with Gelband on the previous study,
was appointed its chair. It was a non-controversial choice. But
the panel itself was an odd amalgam, hopelessly entangled in ancient
antagonisms. On the one hand, there were strong defenders of alternative
methods such as Gar Hildenbrand, then vice president of the Gerson
Institute, and John Fink, author of Third Opinion, and a leader
of the International Association of Cancer Victors and Friends.
They were cheek by jowl with sworn enemies of such methods such
as the chairman of the CS's Unproven Methods Committee. Also present
was Grace Powers Monaco, then the president of Emprise, Inc., a
company which had earned the enmity of many in the alternative field
for attempting to create a totally one-sided data base on unconventional
cancer treatments. Barrie Cassileth, Ph.D., a psychologist from
the University of Pennsylvania, was another panelist. She had carried
out, but then failed to publish, a study on Burton's patients which
advocates said proved that they lived longer than the norm. Dr.
Herbert Oettgen of Sloan-Kettering Institute, who had a marginal
interest in alternative medicine, was also included.
At the same time, the OTA staff systematically excluded those who
could have truly balanced the vehemently anti-alternative forces
on the panel: articulate critics of the cancer establishment, such
as research analyst Robert G. Houston or journalist Peter Barry
Chowka. It also went out of its way to downgrade the importance
of this advisory council. The board was there simply as a giver
of general advice, a source of contacts and a quality control mechanism,
but could not sign off on reports, provide minority opinions, or
come to a consensus (AFacts Concerning OTA's Study of Unorthodox
Cancer Treatments, September 9, 1987). In any case, consensus under
the circumstances would have been impossible, and it seemed like
a gratuitous putdown.
Almost immediately, problems also arose between the OTA staff members
who were writing the report (principally Ms. Gelband and her assistants)
and the alternative medical community. The alternative people saw
themselves as a beleaguered minority who needed to use public pressure
of various kinds even to get a fair hearing. The OTA staff saw themselves
as dedicated public servants, trying to conduct a difficult study
under pressure from both sides but particularly from advocates of
methods that, on the face of it, were dubious and strange.
So for the first year there was a notable lack of progress towards
either designing the IAT study or writing the broader report. At
the first meeting of the Advisory Panel in July, 1987 (almost a
year after beginning) the OTA staff was still outlining its plans
for the study.
The meeting was notable for bringing the unconventional treatment
supporters together with the mainstream in a neutral forum, the
staff later reported. Discussion was generally non-confron-tational
and informative. But no clear direction for the report as a whole
emerged. This was to remain true for several years.
In that same year (1987), Dr. Burton submitted to OTA a case study
of 11 patients who had been treated at his clinic for a deadly form
of cancer called mesothelioma. This small study claimed that patients
treated with IAT lived three to four times the national average
of conventionally-treated patients. Some were, in fact, long-term
survivors.
This was important news, for mesothelioma is almost uniformly and
rapidly fatal. But OTA never even commented on these findings. And
two years later, its sister agency, the NCI, was still demanding
that Burton present them with a best case series, as if they had
never heard of his mesothelioma paper. These were the sorts of experiences
that intensified Burton's already well-established paranoia. But
in this case he wasn't alone in his misgivings. Burton's supporters
forcefully reminded the OTA staff that it was their Congressionally
mandated task to compile exactly such retrospective analyses.
But by this time, Burton's mood and health were slipping, fed by
his disappointments. By December, 1987, many people feared that
another coverup was in the making. At that juncture, a handful of
activists, led by Clinton Miller, long-time lobbyist for the National
Health Federation, took actions that almost scuttled the whole report
process. They released information to influential reporter, Jack
Anderson that Dr. Roger C. Herdman, head of OTA's health and life
sciences division, had previously been employed as Sloan-Kettering's
vice president.
ASloan-Kettering is the enemy of non-traditional cancer therapies,
they were quoted as saying, It is unthinkable that OTA would place
a necessarily biased former vice president of Sloan-Kettering in
charge of this study and expect anyone to give it credibility, (Washington
Post, 12/13/87).
The group also charged that Dr. Herdman owned $75,000 worth of
stock in Oncogene Science, Inc., which had interests in the cancer
diagnostics marketplace. They also reported that his boss, Dr. Gibbons,
owned stock in Genentech Clinical Partners (Washington Times, December
22, 1987). (They might have added that Lewis Thomas, M.D., the president
of Memorial Sloan-Kettering, was on the advisory panel of the OTA).
Both scientists denied that this represented a conflict. In fact,
there was no evidence that they had committed any crime or that
their previous associations or investments had anything more than
a marginal connection to the present study. The alternative community's
dealings with Dr. Herdman and Dr. Gibbons had always been satisfactory.
(Dr. Gibbons became Pres. Clinton's Science Policy Advisor.) Busy
as he was, Dr. Herdman was quite accessible and always gave a fair
hearing to complaints. Because of this, I joined a group of activists
who hurriedly sent a telegram of apology to Dr. Herdman for this
and other insults directed at him personally. The report survived
the storm.
The most serious problems stemmed from relations with the lower-level
staff members, who were actually writing the report. There was simply
no reservoir of trust between them and the subjects of their inquiry.
The staff writers routinely downplayed or even suppressed information
that was at all favorable towards alternative treatments. The most
egregious example involved Patricia Spain Ward, Ph.D., campus historian
of the University of Illinois, Chicago, who had been hired as a
contractor by the OTA. Dr. Ward was perceived as a skeptic about
alternative medicine because she had written a negative paper on
Andrew Ivy, M.D., who had once been president of her medical school
and also a proponent of the unconventional drug, Krebiozen.
But Dr. Ward took the assignment because she was concerned about
the lack of adequate evaluation of such treatments. She thought
that OTA with its sterling reputation for courage and fairness,
would again capture the gratitude of the nation by producing a truly
disinterested, unbiased treatment in the troubled realm of unconventional
cancer treatment. By 1987, she reflected, hostility and distrust
so thoroughly pervaded both sides of this chasm...that only an agency
of OTA's standing could hope to bridge it (Speech to OTA Advisory
Board, March 9, 1990).
In good faith, Dr. Ward prepared reports for the office on three
controversial treatments - the Gerson diet, the Hoxsey herbal treatment,
and the more conventional immune stimulant, BCG. She herself was
surprised to find that there was considerable scientific support
for the potential benefit of all three of these treatments. But
the OTA staff apparently had a different sort of conclusion in mind,
and refused to circulate these reports to its own Advisory Council
Members. In a letter to Ward, they claimed these were too positive
in tone. Under protest from board members, the reports were finally
released.
Yet internal reports that were downright hostile to alternatives
were circulated to panel members unimpeded. The attempted suppression
of Ward's reports was a defining moment. Not surprisingly, hostility
towards the staff and between various board members broke out into
the open at the advisory panel meeting of September 28, 1988. The
staff had circulated a partial draft of the final report to the
advisors but had asked the panel not to circulate this draft to
others. As it turned out, they later complained, it was widely
copied and circulated, and a large number of observers at the panel
meeting had copies.
So did Robert G. Houston, a long-time critic of the cancer establishment,
and this gave him the chance to write a stinging rebuttal, Objections
to a Cover-up: The OTA Report on Alternative Therapies. This, he
distributed at the meeting, much to the consternation of OTA staff
members. (The public was allowed to attend, but not address, that
meeting.) In fact, throughout this entire OTA struggle, Houston
played an important role as both research analyst and strategist
for the alternative side. He produced two other short but brilliant
works: Misinformation from OTA on Unconventional Cancer Treatments
and Repression and Reform in the Evaluation of Alternative Cancer
Therapies, which was published by a patients' rights organization,
Project Cure, Inc.
The OTA staff later complained that the tense atmosphere and combative
nature of many of the observers and panel members strained the discussion
at this 1988 meeting. There was a great deal of criticism of the
draft, largely from the panel members on the unconventional side.
But from the perspective of some panel members such as Hildenbrand
and Fink, this first draft could have been written by any group
of not particularly well-informed quackbusters, not objective government
investigators.
After these events, Michael Evers, J.D., president of Project Cure,
who was himself an OTA contractor on the legal dimensions of the
problem, invited 16 leaders of the alternative cancer movement to
a private conference dubbed the Coolfont Conclave: The Turning Point.
This was held at a Berkeley Springs, WV conference center from August
26 - 29, 1988.
Evers called this emergency meeting in response to growing alarm
that OTA's report was turning into an unprecedented disaster for
the alternative cancer movement. The meeting discussed the first
draft in detail, with a chapter-by-chapter analysis. It identified
what it perceived as its major flaws and then elicited proposals
for improving it. (Several pr-alternative OTA panel members and
consultants were in attendance). It also analyzed the various policy
options that had been presented by OTA at the July 28 meeting and
discussed a comprehensive plan of action for grass roots campaign
and lobbying of Congress.
The mood at the meeting was upbeat and militant and a decision was
made to vigorously fight against any attempt by OTA to suppress
alternative treatments, IAT in particular. It was at this meeting
that I decided to launch a newsletter to cover developments in the
field of cancer politics, especially OTA. And, in fact, the first
issue of The Cancer Chronicles came out less than a year later.
After the Coolfont meeting, publicity on the developing fiasco
intensified. Gar Hildenbrand, John Fink, Frank Wiewel of People
Against Cancer, and I made numerous television and talk radio appearances
on the topic; there were mail-in campaigns directed at OTA itself,
at Members of Congress, and especially at its parent body, the Technology
Assessment Board. Throughout the following year, in fact, Congress
continued to feel pressure on this issue, and to pass that pressure
along to OTA. The final report revealed that more than half of all
Congressmen telephoned or wrote to OTA expressing concern about
the study.
One glaring omission from the draft report was any progress in
actually testing IAT. In July, 1989, representatives of Dr. Burton
met with the OTA in Washington; on August 29, 1989 there was a follow-up
meeting in Freeport, Bahamas between Dr. Burton himself, his representatives,
and OTA's IAT Working Group (who were mainly mainstream academic
scientists). Burton was in a conciliatory mood and agreed to test
IAT in patients with Dukes' C and Dukes' D colon cancer. This would
have been a difficult patient population, at best.
The Burton side proposed a three-stage evaluation process: a review
of his center's clinical records; a pre-trial of patients who were
already coming to the clinic; followed by a full-scale randomized
controlled trial in the U.S., to be performed in accordance with
all FDA's stringent requirements for new drug approval.
The most innovative part of the proposal was the so-called pre-trial.
Its purpose was, according to one of Burton's representatives, to
provide the necessary evidence to cut through the massive governmental
red tape now required for New Drug Approval. NCI would not need
to recruit the patients for this trial, but could simply perform
before and after evaluations of patients, such as CAT scans in order
to verify their diagnoses. OTA could then simply observe and record
what happened to patients who took the treatment. Did they live
longer? Did they feel better? Did their tumors shrink? This is what
is known as a field study or outcome research, and is one way of
assessing the value of a treatment.
Then on October 20, Dr. Herdman sent Dr. Burton a ten-page General
Description of a Clinical Trial of IAT Agreed Upon by Dr. Burton
and OTA. This draft caused consternation in Freeport, and confirmed
Burton's worst fears. Among other things, it contained no mention
of the pre-trial, which had been Burton's own contribution.
AI have not agreed to much of what you have chosen to include in
your report, Burton replied angrily on November 17, 1989. Your
report reflects little more than an outline to obtain negative results.
Congress had asked OTA to develop a statistical analysis of IAT's
efficacy, utilizing existing data and to develop a clinical protocol
of the treatment. Yet, after three-and-a-half years, OTA had failed
on both counts and now sent him this deficient outline.
In its proposal, OTA wrote that no single clinical trial can produce
an answer to the question, Is IAT a safe and effective treatment
for any type of cancer? This was technically true, if only because
FDA routinely requires at least two well-controlled trials. It seemed
like a disingenuous objection.
NCI trials produce answers about other substances, I pointed out
in The Cancer Chronicles at the time. IAT is a biological treatment,
susceptible to clinical trials. Given enough patients, the answer
could be forthcoming. Yet OTA precludes in advance the effectiveness
of any clinical trial, thus turning its back on the scientific method.
OTA next said, Clearly, what we would like to know is whether
IAT produces any clinical benefit to one of the main types of cancer
patient for whom it is commonly prescribed, and, in particular,
whether it may improve the chances of survival.
Fair enough: improved survival is certainly one of the most important
parameters and everyone wants to find a cure for a statistically
important cancer. (In Questioning Chemotherapy, I argue that life
extension has not been proven for the vast majority of instances
in which chemotherapy is employed). But OTA then added that it approached
the task of an IAT clinical trial design with the aim of maximizing
the likelihood of getting a clear answer to a narrower question,
but one that is of obvious importance: does IAT shrink tumors?
That was sheer legerdemain: by 1988 it was abundantly clear that
IAT did not conspicuously shrink many tumors, but, if anything,
stabilized patients' immune systems and increased their quality
survival time. As Burton himself told >60 Minutes, IAT controlled,
but didn't cure cancer. I don't think there is a cure, he told
reporter, Harry Reasoner. There's no such thing. We'd rather talk
about a control. The patients control their own cancer...(in) a
symbiotic relationship. The body is living with the cancer.
2. The OTA Report, pt. 2
The destructive onslaught against cancerous (as well as normal)
cells is chemotherapy's game. For decades, in fact, new chemotherapeutic
agents had been screened for merit by seeing whether or not they
shrank tumors. By suddenly insisting that IAT shrink tumors in any
prospective trial, OTA was dooming the test to almost certain failure.
(And this from the people who (wrote the book) on the problems
of clinical trials in cancer!) The OTA staff also seemed to be preparing
a fallback position for themselves, just in case the treatment actually
showed some benefit in a clinical trial. For then, if the patients
lived longer, or reported higher performance scores, OTA could always
say, But their tumors didn't disappear. So the treatment was a
failure.)
OTA added that smaller and still worthwhile effects on survival
would probably require the study of a much larger number of patients.
But in that case, how was it ever going to be possible to evaluate
the claims of a treatment that helped patients live longer?
Also, Congress had set no limit on the size or cost of the IAT
trial. (And, in fact, OTA spent $500,000 to prepare its written
report.)
Here, too, it seemed that OTA was preparing a fallback position:
Sure, the treatment seemed to work, but only for a negligible group.
Our conclusion is...that more tests are needed.
OTA's third claim was that in the proposed clinical trial, it
is important that patients with a relatively common cancer, and
one for which treatment options are limited, be the focus of attention.
This was so that an important public health problem will be addressed.
Again, one could hardly argue with this. But because of the extension
of chemotherapy's use to just about every type of cancer (Dukes'
C colon cancer was just then joining the ranks), it was considered
unethical to give unconventional treatments to most patients.
Also, the great success stories of chemotherapy were always in relatively
obscure types of cancer. Childhood Leukemia constitutes less than
two percent of all cancers and many of chemotherapy's other successes
were in diseases so rare that many clinicians had never even seen
a single case (Burkitt's lymphoma, choriocarcinoma, etc.)
Why should IAT be held to more demanding standards than chemotherapy?
Was there to be a level playing field, or not?
It did not escape Dr. Burton's attention that this particular precondition
precluded a study of mesothelioma, his most obvious success.
But by now it was widely believed that OTA had no intention of
actually doing a trial of IAT. OTA had, the staff wrote, completed
its formal part in the process... The trial's realization depended
on Burton and members of the U.S. cancer research community, principally
NCI, many of whose members were hostile to Burton for his vociferous
attacks on the cancer establishment. But, Dr. Herdman warned, NCI
will have its own procedures and criteria for deciding on the priority
to be given funding of this study.
In other words, OTA handed the Burton problem over to the tender
mercies of NCI. Not surprisingly, no such clinical trial ever took
place and the world still awaits hard data on the efficacy of this
treatment. NCI simply had other priorities.
By 1990, the report inched towards closure. In late February, interested
members of the public received copies of the 560-page final draft.
(After nearly four years of work, the OTA gave critics, such as
myself, little more than a week to prepare their remarks.) In its
present form, I wrote in an emergency issue of The Cancer Chronicles,
this report will wreak tremendous damage on the movement, with
the public, the media and especially on Capitol Hill.
The report digressed into all sorts of arcane directions, but found
no room for Sloan-Kettering's studies on laetrile between 1972 and
1975 (see chapter 9). Similarly, it devoted two whole pages to the
comments of a pair of doctors hostile to Burzynski, but then merely
reported as a fact that ABurzynski wrote a rebuttal of their report,
contesting their reading of the clinical data.2 None of his rebuttal
points were even hinted at. (See chapter 14 for a detailed discussion.)
The final report was due out on May 30, 1990. But the OTA Advisory
Panel, to its credit, convinced the staff to open the morning session
of its third and final meeting to public comment. Fifteen people,
most of them critics, were given five minutes each to speak.
The cancer alternative movement is facing one of the greatest challenges
in its history, I wrote in the Chronicles. The purpose of the report
is to bury this growing movement under a mountain of falsehoods.
It is unworthy of the agency from which it comes or of the Congress,
which commissioned it. If released in anything like this form, the
report would set back the cause of non-toxic therapies and freedom
of choice for years. That was because every time you complain to
your Congressmen about suppression and coverup, they may throw the
OTA's >proof' in your face.
Alarmed, I called for an effective and militant campaign against
this report, including an intensive day of lobbying on Capitol
Hill on March 8, 1990. I ended with this emotional appeal to cancer
patients:
To you we say: if you are aroused and well-organized you can do
anything. You can stop vicious reports; you can foil the medical-industrial
complex; you can change the face of American medicine. Don't doubt
your strength...Don't be discouraged by this report but unleash
your tremendous anger and direct it at all those who would deny
you your freedom of choice...
Gar Hildenbrand, who was both an Advisory Panel member and an outspoken
activist, called on supporters of the Gerson diet and cancer patients
in general to practice civil disobedience outside the meeting.
On March 9th, he wrote, hundreds of people with cancer, people
recovering from cancer, and worried well people will walk into the
streets. In the early morning, at the Office of Technology Assessment,
cancer patients will lie down in front of the doors to tell Congress:
>You allow this system to go unchallenged OVER MY DEAD BODY.'
As planned, on the day before the meeting, March 8, [1990], scores
of people gathered for a day of lobbying. I was among them. In general,
Congressmen and their aides were sympathetic to their complaints.
But there were ominous signs, as well. A bomb threat was phoned
in to the hotel where most of the report critics had gathered. The
caller ranted about quacks and con men. Michael Evers who was coordinating
the lobbying efforts, asked the F.B.I. to investigate, but they
never caught the perpetrator. Happily, no bomb went off and the
F.B.I. concluded that the caller was a crank.
On the following morning we arrived at OTA headquarters to find
a squad of tactical police with night sticks, Plexiglas shields,
and several waiting paddy wagons. This seemed provocative, since
it was understood that any protest would be entirely non-violent.
The staff later complained about the hostile atmosphere at this
final meeting with shouted personal attacks on the integrity of
the project staff. It omitted all mention of the police presence
outside.
With the exception of a representative from NCI, each of the 15
speeches that day was highly critical of OTA. Each was bracketed
and occasionally interrupted by resounding applause from the assembled
cancer patients, who had come in response to a call to attend from
various alternative organizations, including The Cancer Chronicles.
Seymour M. Brenner, M.D., a radiologist from Brooklyn, New York,
spoke first. He told how he saw between 100 and 150 patients per
day. After 39 years, he said, I have seen no significant progress
in the treatment of cancer. In 1988, he had offered, he said, to
do a research program into the investigation of alternative methods,
using standard safeguards. But the FDA commissioner told him he
would first have to do five year's worth of laboratory and animal
work.
I see millions of people dying in five years, he told the commissioner.
I see hundreds of billions of dollars being spent in five years.
Brenner wanted his medical colleagues to be told, If you have a
patient who is considered hopeless, with an established diagnosis
of cancer, refer him/her to [an impartial] panel. This panel would
then decide if the patient was indeed advanced enough to be given
last-ditch alternative treatments.
It is noteworthy that Brenner does not practice any unconventional
treatments himself. In fact, his peers regard him as one of the
top four radiologists in Brooklyn, according to the independent
Castle Connolly guide to the best doctors in New York City. But
he was honest enough to admit that he knew of at least ten cancer
survivors who had been treated with alternative methods (principally
that of Dr. Emmanuel Revici) and who would have died under my supervision.
AI am tired of watching people come to my office and plead for
their lives and I have nothing to offer them, an impassioned Brenner
told the OTA. I'm frustrated and I'm angry and I'm depressed when
I see a 27-year-old woman who says, >Don't let me die,' and I
have to let her die. The OTA panel seemed stunned by his words.
The next speaker was journalist Peter Barry Chowka. The only victory
now in sight, Chowka said, is one of public relations over the
reality that has become a medical Vietnam. People by the millions
were discontented with conventional medicine and turning towards
alternatives, he reminded them. The OTA report does not adequately
address the urgency of this context. He compared it unfavorably
to the 1953 report from attorney Benedict Fitzgerald. By contrast,
Fitzgerald had concluded that there was indeed a coverup of promising
alternative cancer treatments.
Attorney Michael Evers told the panel that the draft report was
a travesty. Its authors have violated every known rule of fairness
and impartiality. He also showed how subtly OTA could twist the
facts.
Richard Jaffe, Dr. Burzynski's attorney, pointed out the various
biases against his client in the report. For instance, OTA had relied
on an old NCI report on the failure of antineoplastons to cure a
certain type of mouse leukemia. But OTA failed to note that Burzynski
himself had warned NCI that his treatment does not work against
leukemia.
Virginia Livingston-Wheeler, M.D., the only major alternative practitioner
to speak that day, called the report quite extensive, but not always
accurate. Seldom accurate...My work was not covered... (Dr. Livingston
herself died of a heart attack on a trip to Europe that summer.
She was 84 years old. On Livingston, see chapter 13).
In my own remarks to the panel, I said, This report...was supposed
to investigate a coverup. Instead, it has become part of that coverup.
In its present form it will set back the study of non-toxic cancer
treatments for years to come.
I recounted my own experiences at Sloan-Kettering with Dr. Kanematsu
Sugiura and his work of laetrile (see chapter 9). Now, where are
the Sugiura studies in your report? Where are they? I demanded
angrily. The OTA report was supposed to contain all the information
that could be found, rather than a selective culling. But it's gone!
It's as covered up today as it was in 1975.
AI'm not afraid of you, I concluded, and I'm not afraid of what
you're doing. You'll continue with this? Fine. We'll continue to
fight you. If you're smart, you'll save the reputation of OTA and
radically revise this report.
This meeting strengthened the hand of those on the OTA advisory
board who wanted a more balanced presentation. In September, 1990
- four years after its start - OTA finally released Unconventional
Cancer Treatments (GPO #052-003-01203-3). And, indeed, to almost
everyone's surprise, the final report did contain some major revisions,
all of them giving it greater balance. As I wrote in the Chronicles,
although the report still contains many examples of bias, double
standard, error and innuendo, it is an improvement over earlier
versions. About half the misrepresentations are now corrected.
My conclusion was that the final OTA report is something we can
live with.
The staff had finally discovered about 200 scientific papers supporting
the use of alternative cancer treatments. The Summary, Options,
and Recommendations had been completely rewritten by the panel chair.
In essence, the final report underlined the potential importance
of these treatments and called for their fair and adequate testing.
In his foreword, Dr. Gibbons added that while mainstream medicine
can improve the prospects for long-term survival for about half
of the approximately one million Americans diagnosed with cancer
each year, the rest will die of their disease within a few years.
For thousands, he said, Amainstream medicine's role in cancer treatment
is not sufficient. Gibbons remarked that the debate concerning
unconventional treatments is passionate, often bitter and vituperative
and highly polarized. Echoing Rep. Dingell's original letter to
him, he wrote that if history in this area is predictive, some
few unconventional treatments may be adopted into mainstream practice
in the years ahead, others will fade from the scene, and new ones
will arise. That someone in authority thought that conventional
treatments were deficient and that at least a few alternative treatments
might eventually be adopted into mainstream practice was new.
Specifically, OTA made a series of recommendations to NCI. The
main ones were: obtain good information about unconventional cancer
treatments; use up-to-date screening methods; facilitate best case
reviews of unconventionally treated patients; establish a reporting
system for remissions with such treatments, and provide funding
large enough to provide for a fair test of innovative methods.
Out of all these, however, NCI only accepted the idea of best case
review and drew up some guidelines to help those intending to prepare
such summaries. But it rejected out of hand all other OTA recommendations.
For example, OTA recommended that information on alternative treatments
disseminated by NCI be evaluated for adequacy and quality. NCI replied
that it already had a program of telephone monitoring in place.
Regarding OTA's proposal for a registryof remarkable remissions,
NCI responded that 3maintaining a population-based registry would
be difficult, if not impossible.2 But OTA never suggested a population-based
registry, just a simple database of those who seemed to be helped
by such methods.
OTA also reminded NCI officials that it was their mandated responsibility
to pursue information and facilitate examination of widely used
>unconventional cancer treatments' for therapeutic potential.
NCI's arrogant response was that ithas funded a grant to develop
a comprehensive database on >unconv entional cancer treatments.
This was an apparent reference to the Emprise, Inc. grant, which
had been given to a group of self-proclaimed enemies of health
fraud, headed by Grace Monaco, a lawyer who had helped etna develop
its RICO racketeering suit against Dr. Burzynski. (Emprise, Inc.
went out of business soon after NCI, under public pressure, decided
not to extend its grants.)
NCI likewise rejected OTA's proposal for a balanced panel to fund
evaluations of alternative therapies. NCI said that the preferred
solution is to encourage the proponents of >unconventional treatments'
to interact directly with [NCI's] staff. For those who had tried
that route in the past, this was a bitter joke indeed.
One should understand that by 1990 NCI was being attacked on many
sides for its bureaucratic policies and its refusal to consider
new directions in the war on cancer. As the 20th anniversary of
the war on cancer loomed (December 23, 1991), there was a drumbeat
of criticism. At the behest of the late Congressman Ted Weiss (D-NY),
the General Accounting Office (GAO) had conducted a study, which
concluded that there has been no progress in preventing breast
cancer. Science magazine, usually a strong supporter of mainstream
research, also concluded that the war on cancer was a saga of substantial
investments-but little success.
University of Illinois medical school professor Samuel S. Epstein,
M.D. and I co-authored a series of guest editorials in the Chicago
Tribune, Los Angeles Times and USA Today, pointing out, for example,
that Last year, the congressional Office of Technology Assessment
reported on some 200 papers supporting such innovative therapies
and recommended that the cancer institute actively investigate them.
It refused. (Chicago Tribune, December 12, 1991.)
But NCI had circled the wagons. Science analyst Robert G. Houston's
prescient comment at the time was that Congress may have to force
the NCI legislatively to expend a portion of its budget on novel
therapies reported to work.
In fact, what was about to happen was even more amazing than any
of us could have fantasized. An old Chinese adage suggests that
when a rock blocks the path, the most prudent course is to walk
around it. In the following year, a path was found around the NCI
boulder.
