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| Some Thoughts on (October 15, 2002) - Recently, a reporter contacted me by e-mail. She wrote that she was working on a story about alternative therapies, based on the news about a positive study of Lorenzo's Oil, an unconventional treatment for a rare disease (adrenoleukodystrophy) and the subject of a 1992 Hollywood feature film. "I wanted to ask you," she wrote, "if you think it's difficult for a home therapy such as this one to make it though clinical trials and be proven to work. . . several people indicate that they feel a war has been declared against alternative medicine." A war, indeed. The reporter's beat is science and medical news. And a query like this one is difficult to resist. During the course of a week or so, she and I exchanged a lot of e-mails and talked a number of times on the phone. I shared with her the names of some well-informed, credible, and primary sources and a lot of general and specific information gleaned from more than two decades of investigating and writing about alternative medicine.
Although the reporter is widely published, she admitted that she did not have much experience covering controversies in alternative medicine. I found that interesting and revealing. A decade or two ago, "controversies in alternative medicine" was a very frequent topic of mainstream media inquiry. Programs like ABC News 20/20 and CBS News 60 Minutes and high-profile reporters like Geraldo Rivera and Tom Snyder routinely did in-depth, provocative reporting on controversies involving alternative medicine. Have the controversies gone away, then? Not really. They are just off the radar screen of most reporters.
First Take As I considered the issues, one of the starting points I came up with was the observation that, the recent widely reported mainstreaming of complementary alternative medicine (CAM) notwithstanding, few Americans are aware that their own treatment options - indeed, their most personal medical choices - are tightly regulated by the government and are seriously limited. Despite all of the changes and growth in alternative medicine, there remain very little freedom of therapeutic choice and only a half-hearted commitment to medical pluralism in this country. At the local level, the clinical practice of primary alternative medicine is still routinely criminalized. The Access to Medical Treatment Act (AMTA) is a fledgling, and moderate, attempt at reforming things. It is ironic, however, that it is the U.S. Congress that is being asked by proponents of the AMTA to start undoing years of bureaucratic meddling that has resulted in the situation that has made the Access Act necessary - meddling that was voted into law incrementally by the same legislative body. It's no surprise that the Access to Medical Treatment Act has been languishing in Congress since it was first introduced almost a decade ago. The reporter asked me what I thought about the Food and Drug Administration (FDA) and the signature role that it plays. The modern FDA began in 1930 under the mandate of the 1906 Federal Food and Drugs Act. Starting with a tiny number of employees and a limited mandate - primarily to oversee food product labelling - the FDA has grown into a bureaucratic behemoth with a 2001 budget of $1.6 billion and 9,100 employees. As the New York Times reported on October 8, 2002, the FDA now has the authority to regulate products that account for 20 percent of every consumer dollar spent. The agency regulates every aspect of health care, including routinely restricting Americans' choices and preventing access to promising, innovative medical treatments. Restrictions of medical freedom and pluralism continue despite - or perhaps because of - the new context and extraordinary popularity of a segment of alternative medicine that is allowed to flourish - mostly a safe, non-threatening kind, involving "integrated" and "complementary" approaches. Emblematic of the trend are things like the smiling, avuncular face of Dr. Andrew Weil on the cover of Time magazine, or slick television advertisments for a national cancer treatment center that hype the use of vitamins and nutrition (to support the patient's immune system while he/she undergoes conventional chemotherapy).
Sick Children are Emblematic The issue of children with cancer and other life-threatening illnesses whose families want to use alternative treatments is particularly vexing. (The Lorenzo's Oil therapy, which piqued the reporter's interest, is for children.) The challenges and controversies that can quickly envelop and overwhelm families whose children are seriously ill bring into sharp focus the current restrictions on medical choice that affect all Americans.
Over more than two decades, I have covered a half dozen cases of children with cancer whose parents - loving, informed, and conscientous - wanted options other than, or in addition to, chemotherapy and radiation for their sick kids. In each instance, medical authorities and then the state became involved - limiting medical choices and in some cases playing legal hardball by threatening the parents with prosecution for wanting to go beyond mainstream medicine. A child with terminal cancer is heartbreaking enough - but for the parents to have to fight both cancer and bureaucrats is more of a challenge than one can imagine. Parents of sick children today who are interested in accessing alternatives have told me that their freedom is more restricted than it was two decades ago. As an attorney for one sick child's parents told me in 1979, "It's proper for courts to determine if parents are competent. It is not proper for the courts to make medical decisions." Medical doctors and the state, however, believing they will be backed up by the courts, generally take an activist and unfavorable view of parents who employ an alternative therapy for a sick child. A recent, high-profile case involved four year-old Thomas Navarro, who had medulloblastoma, a form of brain cancer, and whose family wanted him to be treated by Stanislaw Burzynski, MD, PhD. Alexander Horwin was another young person with brain cancer whose treatment choices, according to his parents Michael and Raphaele, were dictated by the FDA's unresponsive, bureaucratic rules rather than by his parents' best informed judgments. A touchstone of the medical freedom issue occurred in 1987, when the U.S. Federal Court of Appeals for New York ruled, in a case involving alternative cancer clinician Emanuel Revici, MD, that "An informed decision to avoid surgery and chemotherapy is within the patient's right to determine what to do with his or her own body. . . We see no reason why a patient should not be allowed to make an informed decision and go outside currently approved medical methods in search of an unconventional treatment." If the intent of this ruling could be applied to the FDA and other government agencies, the American people's health would probably be a lot better today.
Starting Points I started my long odyssey of writing about alternative medicine in the 1970s. At the time, I was covering national politics in Washington, D.C. In 1976, I was given an assignment by a national magazine to write an article about cancer. President Nixon had declared an official, bipartisan "War on Cancer" several years earlier and questions were starting to be raised. When I began looking into the cancer war, to my surprise I found a situation that was highly politicized and riddled with conflicts of interest. As I interviewed top people in the federal health agencies, cancer charities, and academic medicine, I discovered they were more like politicians than physicians or healers. One door opened on a dozen others, and after deconstructing medical orthodoxy in a series of articles I started investigating and writing about promising innovative alternatives.
It's been a long and complex journey of discovery and reporting. Throughout the twentieth century, alternative medicine remained controversial but that situation began to change a decade or so ago. Today, alternative medicine has increasingly been "mainstreamed" - it's taught insome medical schools and has found a well-funded home in the U.S. government. Officially, the war on alternative medicine has supposedly ended. But at the grassroots level, as patients will often tell you, it's as hard today as it ever was to get access to primary alternative therapies. The kind of alternative medicine that has started to gain legitimacy ("CAM," a less threatening term) entails adjunctive modalities that can be used along side of conventional treatments while not threatening the hegemony of the conventional medical power structure and the entrenched economics of the medical/pharmaceutical status quo. A clear look at the cancer field is instructive. The bottom line has long been - and still is - that more people in this country make a living from cancer than die from it (annually). And about 600,000 Americans die of cancer every year. Meanwhile, cancer is about to become the leading cause of death, the average patient spends six figures to treat his or her disease, and the "five-year survival rates" for most forms of cancer are only marginally better than they were three decades ago. What's wrong with this picture? Everything - including the fact that the politics and economics of cancer may have become more complex than the science of cancer. History is full of examples of promising innovative therapies arising from outside of the mainstream - ranging from discoveries in the laboratories of Nobel Prize winners like Linus Pauling, Ph.D. and Albert Szent-Gyorgyi, MD, PhD, to the offices of lay healers like Harry Hoxsey (all of these individuals are long deceased). But no matter where it came from or how credible the proponent, if an approach was considered by the powers that be to be "unconventional," it faced an uphill and usually impossible battle. A kind of medical McCarthyism has reigned - and once an innovator was blacklisted or relegated to the medical gulag, he or she faced a daunting road to acceptance or even to getting a fair hearing. Many credible pioneers have died of old age before their discoveries were ever recognized, acknowledged, or made widely available.
Looking to the Future During a week or so of regular contact with the reporter, I shared much of the previous information and observations. I also developed some fresh insights of my own into the state of alt med today, and some concerns about what lies ahead. It seems promising that alternative medicine has gained a strong foothold, not only in this country but around the world in widely divergent cultures. An article on September 17, 2002 in The Age (Australia), titled "Alternative Medicine Booming," reported that "Australians are spending more on alternative therapies than pharmaceuticals, prompting calls for improved regulation of the complementary medicine industry and some soul-searching by doctors. An Adelaide University study shows 60 per cent of women and 44 per cent of men use alternative therapies." Another article, in the Gulf News (United Arab Emirates), reported, "Public hospitals [in the UAE] could start offering alternative medicine services to patients, Sheikh Mohammed bin Saqr Al Qasimi, assistant undersecretary at the Ministry of Health and director, Sharjah Medical District, said yesterday. 'It is a possibility, since difficulties in diagnosis or treatment while following traditional medical methods could possibly be resolved by alternative medicine, the various branches of which we are now examining and trying to understand,' he said while opening Ayurvedic Herbal Health Centre's new premises. He indicated the thrust towards alternative medicine in the UAE is gaining fresh momentum, pointing out the ministry has established a new department to review the issue and scrutinise applications on a case-by-case basis. 'The medical authorities did not recognise these alternative forms, but we are now closely studying them and granting permission after scrutiny of the documents and facilities,' he added." In the United States, the federal government's full scale entry into the field began in 1991 with legislation passed by the Congress mandating the Office of Alternative Medicine (OAM) at the National Institutes of Health (NIH). Over the course of a decade, alternative medicine has been renamed - to complementary alternative medicine - and given its own burgeoning bureacracy. The OAM started humbly, with a $2 million a year budget which its first director, Joe Jacobs, MD, referred to as "homeopathic." Today, it might be described as metastatic as spending has grown to over $113 million annually via the National Center for Complementary and Alternative Medicine (NCCAM), which in 1998 supplanted the OAM. A 5,600 percent increase in the federal budget for alt med during the course of one decade is not bad. Another $2-plus million was recently spent by the White House Commission on Complementary and Alternative Medicine Policy (WHCCAMP), which took two years to study the field, take testimony from hundreds of witnesses, and issue a lengthy report that contained more than 100 recommendations for more federal spending, research, integration, and so on. But all of this has not been enough for many proponents of complementary alternative medicine, who routinely advocate bigger infusions of tax dollars in order to put their vision of alternative medicine on an even faster track, with demands that it be included in Medicare, made available free of charge to "underserved communities," and otherwise expanded. One might ask what all of the money spent on CAM - probably close to half a billion dollars since 1992 - and the personnel, conferences, committees, reports, and meetings have achieved. Part of the answer might lie in a typical, current case history. In May 2001, the National Cancer Institute (NCI) announced that it would conduct a review of 714X, a nontoxic Canadian cancer treatment used by many Americans. There was a buzz about the treatment in April and May of 2001 when the leading media in Boston exposed an alleged cover-up of promising tests on 714X by a major conventional cancer research center. Quickly, the U.S. National Cancer Institute became involved, noting that it had the mechanisms to do a fast track review of 714X. On May 30, 2001, Jeffrey White, MD, the director of the NCI's Office of Cancer Complementary and Alternative Medicine, told me, "we ought to be able to get that review [of 714X cases] done in a month's time [after the cases were submitted]." (The cases were submitted in August 2001.) White continued, "Then we'll have to find out when the next meeting of the CAPCAM - the Cancer Advisory Panel for Complementary Alternative Medicine - is and get it [714X] scheduled on the agenda for CAPCAM review." That next CAPCAM meeting took place on February 25, 2002 and, according to the official minutes of the meeting, 714X was not discussed. As of this writing, eight months later, the CAPCAM has yet to meet again. On October 7, 2002, the mother of a cancer patient who used 714X successfully, and who helped to spearhead the effort in Massachusetts in early 2001 to uncover and bring to public attention the positive 714X tests, told me, "Nothing has happened with the NCI and 714X. [My son] just had to sign more permission papers as they [NCI] are continuing to ask for more information. CERBE [the company in Canada that produces 714X] is supplying everything that is possible - it seems as though the NCI is just trying to prolong things."
A Rare Voice of Dissent An allied area of inquiry is the cancer Establishment's attention - or inattention - to environmental causes of cancer and primary prevention, and the myopia of the huge federal agencies and disease-oriented nonprofit groups that are supposed to be doing something about cancer, heart disease, and other conditions but that instead put most of their eggs in the treatment basket. It is the "failure of orthodox medicine" as represented by this status quo that has provided the inspiration for people to explore alternative options in the first place. In December 2001, on the thirtieth anniversary of the U.S. War on Cancer, I spoke with Samuel S. Epstein, MD. A prolific author (including The Politics of Cancer), recipient of the Right Livelihood Award (the "Alternative Nobel Prize"), expert on environmental cancer, emeritus Professor of environmental medicine at the University of Illinois School of Public Health, and Chairman of the Cancer Prevention Coalition, Epstein commented on the situation these days vs. a decade or two ago. "I'd say we're progressing from bad to worse. The fixation of the National Cancer Institute and the [leading cancer charities] on damage control, mainly diagnosis and treatment and basic molecular biology to the virtual exclusion of providing the Congress, the regulatory agencies and the public with a vast body of information on avoidable causes of cancer, coupled with the escalating incidence of cancer, coupled with the manipulation of data by the NCI, an effort to trivialize the incidence and to emphasize misleadingly the plateauing of mortality rates which has got nothing to do with any efforts of the NCI but merely reflects the decrease in smoking in men. That, coupled with the fact that we now have, I think, reasonably persuasive evidence that up to 75 percent of the increase in cancer rates in recent decades is non-smoking in origin. All of these factors are merely manifestations of the fact that we have gone from bad to worse and that as cancer rates continue to escalate the public is being fooled more and more, Congress is being fooled more and more into believing that we're winning the losing war against cancer, and the opposite is true. The NCI budget has now escalated beyond all conceivable proportions. . .I really think that we're going to see the incidence of cancer escalate still further. And I really think we're in a major disaster. "We have infinitely more politics and what's more, infinitely more money. Cancer is now a highly profitable disease. When you read Cancer Letters, which is one of the very best twice-monthly letters, you find further confirmation that at no time in history has any disease, and the treatment of any disease, been so closely tied in with industry interests. And I really believe that we're going from bad to worse in this whole area because there's no single voice, or there are very few single voices raised in protest and overwhelming efforts are made to isolate those voices. "The essence of democracy worldwide is the right to know, of citizens and consumers, all aspects of information governing their lives, health, welfare, and national policies with the exception of course of certain issues of national security. But here we have situations in which the public is provided with no information on the fact that there are 60 different carcinogens in cosmetics and toiletries and household products that people use all the time. In foods, there's no labeling of any kind other than fat and so on and so forth. The public isn't given information on levels of carcinogens in the air from nearby chemical industries. And at the same time they're being lulled into a false sense of security by the media. "The rollover media have an enormous responsibility in what's happening now. Their gullibility,
their lack of independence. . .And there's so little in-depth reporting. The dynamic trio at the New York Times of Gina Kolata, Jane Brody, and the other one whose name just escapes me - they roll over with gushing hyperbolic enthusiasm at all the latest sudden
advances in cancer chemotherapy. For years I've been talking about
the dangers and unreliability of mammography, especially pre-menopausal
mammography. It's taken twelve years or so [until] these questions
are now surfacing in the press. So we're really dealing with a massive
rollover of the media, overwhelming industry complicity, major response
of the NCI and the ACS, and with one or two lone voices such as
yourself and however powerful a story you're going to tell. I hate
to say, it's going to be lost in this hyperbolic enthusiasm of 'we're winning the war.'"
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