The Impact of Medical Censorship on Patient Care: Part 4

Abolish the American Cancer Society and distribute its shameful and colossal bank accounts to cancer patients. Nobody can point to a single major research development from the billions that have been given the society. That institution is a disgrace.
– Patrick McGrady, Jr., "The Cancer Patient's Quandary," Newsday, 9/30/84.

At its inception, the Society should have played the role of ombudsman for cancer victims, keeping researchers and doctors on their toes, calling foul when new drug development is roadblocked by the FDA, testing unusual methods that showed some promise. Instead, it has become a major part of the problem. It eschews sponsorship of clinical and research innovation and instead goes in for propaganda . . . and it ritually condemns and suppresses unorthodox methods which, incidentally, it does not even trouble itself to investigate thoroughly.
– Patrick McGrady, Jr., "The American Cancer Society Means Well, but the Janker Clinic Means Better," Esquire, April 1976.

I devoted my column in November's issue, the third in a series about censorship in medicine, to the American Cancer Society (ACS) and a list of unorthodox cancer treatments it has circulated for decades. The Society has labeled these approaches "unproven," a bland word obscuring the fact that the ACS has historically equated "unproven" alternative treatments with snake oil and other forms of quackery. The Society's coded twist on "unproven" has turned the list of therapies it views as departing from medical orthodoxy, into a blacklist.

The ACS blacklist concerns me – and should concern many Americans – because it factors in a major way into the withholding of information about therapies that might prove, if fairly evaluated, beneficial to cancer patients, particularly those with resistant disease.

My November column broke off after reviewing the origin and growth of the ACS. This column reviews criticism of the Society for its fund-raising pitches and promotion of the war against cancer. It also analyzes the evaluative biases pervading the blacklist, and later discredits an article recently published in an ACS journal, which contended that certain treatments regarded by the Society as "unproven" have been "disproven."¹

Some readers may wonder why so much of history about the ACS precedes scrutiny of its blacklist and an article related to it. That extensive history is necessary to appreciate how the blacklist has functioned as merely one means through which the Society has worked to influence cancer care in the US. The ACS's funding campaigns and its lobbying for greater government investment in research, its chief means, have fitted hand-in-glove with the blacklist in the Society's efforts to control research priorities and access to treatment since the 1940s.

Criticism of the ACS for Fomenting "Cancer Phobia"
In the first years of the take-over of the Society, a member of the ACS inner circle began "his fund-raising speeches," reported Ralph Moss in The Cancer Industry,² "with a dramatic 'One in five of us here – every fifth person in this audience – will die of cancer.'"

Early Society publications, observed James Patterson in The Dread Disease,³ "outlined the frightening ramifications" of cancer. Lumping the expense of treatment, loss of work, and productivity, the annual toll of the disease was $2 billion in the late 1940s. Deaths were rising fast; 160,000 in the mid-1940s, 200,000 by 1950. Projections had 17 million Americans then alive eventually dying of cancer. An ACS poster (1947) hammered home the bad news: "Every Three Minutes Someone Dies of Cancer. Guard Those You Love. Give to Conquer Cancer."

Stoking fears of cancer scared Americans into writing checks to the ACS. Keeping the heat on by stressing the horrors of cancer stirred concerns about the Society's scare tactic. Patterson cited three noteworthy critics. In 1948, the medical director of the American Psychiatric Association "complained that 'propaganda' about cancer was inspiring fear of death and fomenting popular panic."

In 1952, a woman who went public with the story of her battle to survive the disease incorporated her objections in her book.⁴ "Cancer, Our Number Two Killer," she wrote. "Great posters blaze this unfortunate – equally unhelpful – truth across the countryside. Shocking the Sunday afternoon reading public into action? No, into hiding."

In 1955, Dr. George Crile, one of the first American surgeons to dissent against radical mastectomies, published a book that castigated the ACS for its incessant harping on fears about cancer. Patterson quoted Crile's book (Cancer and Common Sense): "They have portrayed cancer as an insidious, dreadful, relentless invader. With religious fervor they have fashioned a devil out of cancer. They have bred in a sensitive public a fear that is approaching hysteria. They have created a new disease, cancer phobia, a contagious disease that spreads from mouth to ear. It is possible that cancer phobia causes more suffering than cancer itself."

Later critics of the ACS's "weapon of fear" (Patterson) have weighed in on the Society's excessive employment of this approach.

Criticism of the ACS for Inflating Cancer "Cure" Rates
Damping (but retaining) the fear element in its appeals, the ACS coupled good news with bad. Treatment was better, the Society said, cancer patients were living longer, mortality rates were slowing, and just around the corner, or on the horizon, or perhaps down the road a decade, researchers in hot pursuit of cancer would slay the "beast." Don't forget, meanwhile, to send a check: the human and animal denizens of the research labs take steady feeding.

That has been, and continues to be, a self-assigned endeavor for the ACS – working the money pump for cancer research. Patterson quoted Kenneth Endicott, NCI director in the 1960s, on how the Society interacted with the NCI in enlarging the latter's research funds: "A secret of really effective working relationship between the Society and the NCI is to let them take the lion's share of the credit and don't get uptight about it. Because they reciprocate by pushing for a big budget for NCI. Okay, let them get the headlines, what the hell."

And push the ACS did! Until, presto, the Society's leaders, utilizing their ties to President Richard Nixon and Democratic and Republican members of Congress, brought forth in 1971 the federal government's officially-declared "war on cancer." That was an ACS brainchild – placing the NCI "generals" in charge and swelling the flow of Congressional research appropriations – which the Society has nurtured and defended to this day.

At first, the ACS faced few questions and challenges, which the Society felt free to disregard. Many Americans approved the mobilization of the nation's science resources in quest of a cancer cure. NCI researchers relished the federal flood of dollars, eager to plunge more heavily armed into battle.

Dean Burk, PhD, head of the NCI's cytochemistry section, addressed an open letter to the NCI director in 1973, "re: the Achilles heel of the National Cancer Act of 1971" (the Act formally committing the US to war against the dread disease). The Cancer Control Society published Burk's letter the same year. As Patterson and Moss have detailed, the mainstream media and the American public still held positive attitudes about the ability of scientists to solve medical puzzles, still incautiously swallowed publicity releases by the ACS and other establishment institutions about research advances in cancer; so the media apparently didn't pick up on Burk's negative critique.

Here is the gist of that critique, relevant today. Virtually all FDA-approved anticancer chemotherapy is toxic in humans, markedly immunosuppressive, and usually carcinogenic in animals. FDA-approved drugs yield five-year survivals in just five to 10% of advanced cancer cases.

Nevertheless, Burk's critique contended, officials of the American Cancer Society and even of the National Cancer Institute have continued to present to the public, optimistic statements about the cure rate, "but-seldom if ever backed up with the requisite statistical or epidemiological support for such a statement to be scientifically meaningful, however effective for fund gathering."

These passages are the tail end of the fundamental contention of his critique, specifically: It is a professional and popular fallacy to think that if a therapeutic agent can't harm the host, it can't be effective against a cancer that attacks the host. Such a fallacy, in his opinion, was preventing a search for agents safer and more effective than FDA-approved chemotherapies.

An article that did circulate widely, "A Critical Look at Cancer Coverage," came out in the Columbia Journalism Review in 1975. The author, Daniel Greenberg, a science writer in Washington, DC, specialized in the politics of science. Moss set the context for Greenberg's article: "Years of cultivating the press had made the American Cancer Society virtually sacrosanct. From 1945 to 1975 one could search in vain for an incisive, critical article on the Society or its methods. Then, in the mid-1970s, criticism suddenly burst into the open about the whole topic of cancer. The 'war on cancer' had made the leading organizations visible and vulnerable."

Greenberg's article, according to Moss, was part of that explosion of criticism. Studying recent NCI data and interviewing cancer clinicians and researchers, Greenberg arrived at extremely critical conclusions. Moss included a quote from Greenberg: "Today's patient, who is supposedly the beneficiary of the burgeoning of cancer research that began in the early 1950s, has approximately the same chance of surviving for at least five years as a patient whose illness was diagnosed before any of that research took place."

The NCI and the ACS tried to slough Greenberg off, contending that he had relied on outdated statistics that poorly reflected progress in the war on cancer, then in its fourth year (Moss). Around the mid-1980s, the ACS and its friends found it much harder to answer critics skeptical about establishment communiqués that trumpeted upturns in five-year survivals and downplayed uncomfortable facts about incidence and mortality rates.

A decade after Greenberg's article, these later critics still could detect no significant progress in the war against cancer. Like Dean Burk, they were embedded in the cancer research establishment. Like Burk, they also concentrated on the data from which the rosier rates were figured, exposing the artifacts and other statistical manipulations which the ACS and its allies had resorted to in justifying more federal bucks for the war. Then, they struck at the underlying premise of the mainstream warriors – that the war was winnable, that researchers were accumulating enough clues about the nature of cancer to verge on a cure – and they urged a rethinking of strategy. Invest more in prevention, they recommended. We have solid clues on prevention. Following up on them might well improve survival, mortality, and incidence rates for many cancers.

Space here doesn't permit more than due mention of the names of the most respected critics in the 1980s and a footnote citing their key articles: Drs. John Bailar, John Cairns, and Hayden Bush first and foremost.⁵ I'd be remiss, though, if I didn't mention more recent articles by two less familiar critics of the war on cancer, Drs. Michael Sporn and Jerome Groopman.

Sporn began a commentary on this medical war in the Lancet in 1996 (May 18), quoting from Charles Dickens' Bleak House. Sporn's first sentence linked the quote to his article, and together they made an unforgettable statement: "Dead, your majesty. Dead, my lords and gentlemen. Dead, Right Reverends, and Wrong Reverends of every order. Dead, men and women, born with Heavenly compassion in your hearts. And dying thus around us every day." (Dickens)

"This magnificent quotation provides a unique summary on the total success of the 'War on Cancer' during the past 25 years." (Sporn)

In the early 1990s, Sporn was in charge of "chemoprevention" at the NCI (prevention through natural compounds as well as synthetic drugs). His Lancet review has the sound and substance of profoundly expert opinion: "Common carcinomas continue to be a major cause of death and suffering, particularly in adults. We must develop new approaches to control this plague of death, adopting an ethic of prevention, based on a more sophisticated understanding of the process of carcinogenesis and the potential to prevent disease before it becomes invasive and metastatic. Reductionist molecular biology can only proceed so far with its brilliant analysis of all the bits and pieces that comprise the organism. Carcinoma is not a disease of an individual cell. Carcinoma is ultimately a more complex failure in homeostasis, a chronic, maladaptive tissue and organismic response to injury. Carcinogenesis is a contextual process in which epithelium and mesenchyme fail to communicate properly with each other, resulting eventually in invasion and metastasis."

Groopman's article, titled "The Thirty Years' War" – subheaded "Have we been fighting cancer the wrong way?" – appeared in The New Yorker (6/4/01). Action behind-the-scenes enlivened his history of the war on cancer. Interviews with Drs. Samuel Broder and Richard Klausner, once directors of the NCI, and Dr. Harold Varmus, former director of the NIH, highlighted the piece. All voiced misgivings about the goals and conduct of the war.

Varmus felt that cancer didn't "deserve unique distinction for funding," that cancer genetics alone wouldn't suffice to understand the complex mechanism of cancer; it would require advances in physics, chemistry, and computer science.

"Given the performance of the targeted therapies available so far," said Broder, it was "premature to invest more in the federal bureaucracy that oversees clinical trials." (The words in quotes are Groopman's paraphrasing of Broder.) "Initiative and creativity have moved to the private sector," noted Broder.

Klausner suggested that the best way to move cancer research ahead was to call off the war. He pictured cancer as an intricate puzzle, with the knowledge and tools to solve it presently lacking. Since clues could come from any discipline, the NCI needed more disciplinary openness. Under his tenure, he broke up the clinical-trials bureaucracy so that it no longer operated like "a closed shop controlled by inbred committees." (Groopman)

Effects of the ACS Blacklist: "Disproving" Vickers
The ACS sword, a symbol the Society "inherited" from the ASCC, has two cutting edges, with two serpents usually intertwined around the hilt. In my imagination, I can see the point and one edge stabbing and slashing at cancer (often symbolized as a crab). I sometimes fancy that the second edge is for repelling treatment approaches the Society regards as dubious.

Figuratively speaking, the ACS has turned that second edge against treatments departing from accepted oncology practice, or approches not based on accepted concepts about managing disease.

The Society's literal weapon of choice against nonconventional therapy has been the list drawn up by its Committee on Unproven Methods of Cancer Treatment, renamed the Committee on Complementary and Alternative Medicine a few years ago. If the ACS has subsequently renamed the list, but wields it in the old hostile way, it remains a blacklist. Historically, inclusion in the ACS list has had serious punitive effects. Nonconventional doctors have been hauled before state medical boards when mainstream physicians heard about their approaches, learned that the ACS believed them suspect, then filed complaints with the boards. Insurers have refused to pay for treatment prescribed by doctors whose names appeared on the Society's list. Blacklisted by the ACS, medical scientists have lost research grants or had grant applications denied. Blacklisted, clinical researchers have found it impossible, or extraordinarily difficult, to publish their studies in peer reviewed journals.

Doubtless, the Society feels that in acting as gatekeeper for treatments it believes to be dubious it is performing a responsible, valuable public service. But the value of such a service derives from how responsibly it is performed. Has the ACS behaved responsibly, properly, in compiling and publicizing its list?

I quote from an open letter written in 1973 by Dean Burk, then head of the NCI's cytochemistry section. "The word 'unproven' as used by the ACS," said Burk, "is a highly and unjustifiedly weighted word." Burk rated the Society's evaluations of treatments it believes to be "unproven" as having "close to zero scientific worth."

Burk wasn't the only mainstream scientist in his day aware that the Society's evaluations of treatments on its blacklist were "unjustifiedly weighted." Not many mainstreamers echoed him publicly. The ACS, Moss showed, directly or indirectly has had a hand in numerous powerful medical institutions. Speak out against the ACS sharply enough to provoke it, and the Society might strike back. Like Indian deities portrayed in art with scores of arms and legs, it could lash out with one, many, or all of them.

Independent critics did reveal the disingenuous basis of the ACS blacklist. In the 1970s, before Ralph Moss brought out his exposé of the cancer care complex, science writer Robert Houston and investigative journalist Peter Barry Chowka published magazine articles that picked apart the shortcomings of the ACS evaluations. All three have since taken swipes at the Society, its methods, and its blacklist – notably Houston in Repression and Reform in the Evaluation of Alternative Cancer Therapies, published by Project CURE in 1989.

Patrick McGrady, Jr., the late author of bestsellers on health care, stormed against the ACS and its blacklist for many years. Usually, he'd direct his Jovian thunder and lightning bolts at the NCI and FDA as well, for he was apt to rage against all bureaucratically-minded institutions and organizations that blocked effective avant-garde treatments from reaching cancer patients.

Note that the establishment (Patterson included) has associated these critics with people and groups it labels the "cancer counterculture." As the saying goes, you couldn't pay these individuals to write one word they believe untrue. And none of them are slouches at research and thorough documentation. The salient thing about them is their independence.

I don't have room to go into every problem with the ACS blacklist that independent writers have spotlighted. Here, without specific illustration, is the gist of their investigations into the credibility of the Society's list.

Studies showing positive results under treatments on the list are often omitted, even if conducted by reputable independent investigators and published in peer review journals, even when they meet the gold standard of therapeutic evaluation – the randomized double-blind clinical trial. When they are mentioned and discussed, their findings tend to be dismissed, distorted, misrepresented, or misunderstood.

Studies showing negative results for treatments are almost always cited as proof that these approaches are virtually worthless. It doesn't count if such studies fall shy of the gold standard, or the trial design is poor, or the methodology slack, or that the investigators violated trial protocols, or failed to replicate faithfully prior trials indicating efficacy,⁶ or that the negative studies are exceptions to a heap of positive studies. In a few odd cases, studies said by the investigators to be inconclusive are somehow interpreted by the ACS as definitively negative.

That's it, in the colloquial nutshell. Consult a copy of Moss, part two, for deep dissection of the blacklist treatment-by-treatment. Get hold of Houston's Repression and Reform (obtainable from PeopleAgainstCancer.com), and skim to the sections refuting ACS misinformation about treatments pioneered by Lawrence Burton, Stanislaw Burzynski, and Emanuel Revici.

At the beginning of my first column on the ASC, I promised to scrutinize the evidence cited in an article appearing last Spring in one of the Society's journals.¹ I commented on this article earlier, reiterating its assertion "that many alternative cancer therapies have been 'disproven.'" The author, Andrew Vickers, is a research methodologist at Memorial Sloan-Kettering Cancer Center (MSKCC). Reading between the lines, one senses that he may be stating a view the ACS and MSKCC share, which the Society won't or can't express publicly.

To test Vickers, I spotchecked his handling of Dr. Stanislaw Burzynski's antineoplastons, hydrazine sulfate, and high dose vitamin C – three of the 12 treatments he "disproved." I figured a 25% sample would suffice to gauge the soundness of the manner in which Vickers chose and interpreted his evidence.

Referring to studies published by Burzynski on his antineoplastons, Vickers characterized their design as "rather unclear." He omitted standard trials done independently in Japan indicating efficacy. He also ignored the fact that for the past 15 years Burzynski's own studies have followed trial designs approved by the FDA. Vickers concentrated on one trial of six glioma patients conducted here under NCI auspices. Previously treated unsuccessfully with radiation, the patients were terminal. Objecting to the NCI selection of patients and changes in design which violated the original protocol, Burzynski predicted failure and walked away from the trial. Though the investigators cautioned that the sample was too small to draw "definitive conclusions," Vickers concluded it was time to "deep-six" Burzynski's antineoplastons.

To "disprove" hydrazine sulfate, developed by Dr. Joseph Gold, Vickers referred to several early clinical trials that had suggested possible benefit. Then he selected one of these trials as an example, a randomized study of 65 patients with advanced nonsmall cell cancer, in which one arm got chemo alone and the other hydrazine plus chemo. In the hydrazine group, he stated, "overall survival was non-significantly higher." Later trials of hydrazine enrolled larger numbers of patients having, respectively, advanced colorectal cancer, newly-diagnosed nonsmall cell lung cancer, and advanced nonsmall lung cancer. The colorectal patients received "no other oncologic therapy." The advanced lung cancer patients got cisplatin and vinblastine. The newly-diagnosed lung cancer patients were concurrently treated with cisplatin and etoposide. Vickers wrote, "hydrazine sulfate did not improve survival in any of these settings." He said nothing about Gold's crucial objection to these trials; they used substances known to be incompatible with hydrazine sulfate, vitiating its effects. A General Accounting Office investigation (Congress) strengthened Gold's position. It's old news that hydrazine produces few long-term remissions. What about improving quality of life? Large Russian trials and several good ones at the University of California, LA, have shown that hydrazine is active against cachexia. No word from Vickers on the Russian trials, a mere mention of one UCLA trial showing that patients on hydrazine survived 48% longer than those in the control group.

He zeroed in on trials at the Mayo Clinic that reported no benefits in patients given vitamin C orally, discussing the findings at length. He did include one objection by Linus Pauling, PhD, co-author of the high dose protocol investigated: Mayo enrolled patients pretreated with chemo, and that, said Pauling, would have compromised host immunity, weakening the effects of C. Almost in passing, Vickers referred to reseachers who had suggested that the failure at Mayo may have resulted from oral administration of vitamin C. In the Pauling study, C was given both orally and intravenously. Recent studies have demonstrated that intravenous administration produces much higher plasma levels of vitamin C than oral administration. Vickers didn't let on that these recent studies were conducted under NIH auspices. Or add that further studies under the NIH confirmed that vitamin C in concentrations obtainable only through IV usage kills cancer cells.⁷

Conclusion
In 1992, the late Dr. Emanuel Revici – on the ACS blacklist since 1961 – was treating a boy from Ontario with brain cancer. His parents hoped to control the tumor under Revici's nontoxic treatment, sparing him from radiation therapy, which might lower his IQ by 20 or more points. The boy felt well. Scans indicated tumor stabilization. The parents were prepared to treat with conventional radiation immediately, if he showed signs of failing.

Radiologists in Ontario petitioned the court to turn over custody of the child, so they could administer therapy as soon as possible. A court-appointed lawyer for the child contacted Revici's office: Could Revici send studies on the efficacy and side effects of the conventional and nonconventional treatments in this case to the court? I was a political consultant to Revici at the time; it was part of my job to handle such business. I conduced extensive research, and mailed a number of studies to Ontario.

Months later, I received a fax from the lawyer. It was the decision on the boy, denying the request for custody. I was astonished. In the US, when parents refuse or delay mainstream treatment for minors that doctors think necessary, judges usually give custody to the doctors. Canada, the boy's lawyer told me, has a Charter of Rights, similar to our Bill of Rights, but the Canadian Charter makes no distinction between adults and minors in matters affecting the security of an individual. Regardless of age, Canadians are entitled to reject treatment that doesn't allow them to handle disease with dignity.

The ACS deals with adults as US courts tend to deal with minors. Give the Society authority under law, it probably would force as many advanced patients as it could into conventional chemotherapy proven ineffective in 93 out of 100 cases.⁸ With its immense influence and powerful connections, it does funnel hosts of patients into largely useless mainstream care. At bottom, the ACS's autocratic attitude and coercive policy rest on an arrogant, elitist arrogation of the right to decide who lives, who dies.

Well-to-do people created the modern ASC in the mid-1940s, constituting its lay leadership for over a generation. They excelled in advertising and public relations skills picked up through their businesses. Clarence Little, the last scientist to run the overall operations of the ACS, felt these newcomers had a poor grasp of the complexities of cancer. They had gotten into cancer, he complained, as a "civic interest." Little especially disliked the lay group's "unjustifiable, troublesome, and aggressive attitude of 'knowing it all.'" (Patterson)

Though the original lay leaders have died, the pitchman remains at the core of the Society's soul. A pitchman mentality drives the activities of the ASC. This mindset holds that the end justifies the means – be it playing on fear of cancer in funding campaigns, selling the war on cancer and then rigging mortality rates to proclaim progress in the war, or employing a blacklist to "censor" information about plausible alternatives to mainstream treatment.

Taking charge of the ACS, the business-oriented group disbanded the Women's Task Force, a million volunteers who had successfully raised money and public awareness of cancer nationwide. In the eyes of the new leadership, these women were "do good amateurs." Since the business makeover, the Society's funding campaigns have been remarkably professional. But in this period, the ACS has also become the very embodiment of a "do good" zealot. So anxious has the Society been to fence off doctors and patients from information about treatment it deems suspect, it has countenanced means that are themselves thoroughly suspect. The ACS blacklist is not an isolated instance, just the most evident.

References
1. Vickers A, Alternative cancer cures: "unproven" or "disproven," Ca A Cancer Journal for Clinicians, March/April 2004.
2. Ralph Moss, The Cancer Industry (Equinox Press, B'klyn, NY, 1996).
3. James T. Patterson, The Dread Disease: Cancer and Modern American Culture (Harvard University Press, Cambridge, MA, 1987).
4. Edna Kaehele, Living with Cancer (Garden City, NY, 1952).
5. Bailar JC et al, Progress against cancer? The New England Journal of Medicine, 5/8/86.
Bailar JC et al, Cancer undefeated, The New England Journal of Medicine, 5/29/97.
Cairns J, The treatment of diseases and the war against cancer, Scientific American, November 1985.
Bush H, Cure, SCIENCE 84 Magazine, September 1984.
6. Carter SK, In: Clinical Trials in Cancer Medicine. Eds. U. Veronesi and G. Bonadonna; pp. 1–20 (Academic Press, 1985). Carter dealt with problems in clinical trials generally, not with specific reference to CAM.
7. Padayatta SJ et al, Vitamin C pharmacokinetics: oral and IV use, Annals of Internal Medicine, 4/6/04.
8. "Chemotherapy results in durable response in only 4% of patients and substantially prolongs the life of an additional 3% of patients with advanced cancers." Smith TJ et al, Efficacy and cost-effectiveness of cancer treatment: rational allocation of resources based on decision analysis, Journal of the National Cancer Institute, 9/15/93.