© By Peter Barry Chowka

(April 1, 2008) Cancer Monthly is a Web site and newsletter founded by volunteers including Michael Horwin, MA, JD. The site is described as “under the management and counsel” of Horwin. (More on Horwin later in this article.)

On March 28, 2008, the e-mail version of Cancer Monthly included an article, also available online, titled “Cancer Clinical Trials and Alternative Treatments.” The article documents in shocking detail how “Few Clinical Trials Focus on Alternative Approaches to Cancer.”

“Few,” in fact, proves to be an extreme understatement.

The article notes that the database of the National Cancer Institute shows that “there are currently 7,080 active clinical trials for cancer.” Not surprisingly, in light of the ongoing dominance of the drug-treatment paradigm of modern medicine, about one half of the trials (3,198) are focused on chemotherapy and “over two thousand looked at cutting edge [conventional] biological therapies like anti-angiogenesis approaches.”

Cancer Monthly found that “only 123 trials were 'complementary or alternative' – treatments focused on naturally occurring agents.” Of the 123, which represent only 1.7% of the total number of trials, the vast majority involve studying natural products for their potential role in prevention and in integrating with conventional treatments, for example “To improve quality of life (i.e., reduce pain, hot flashes in women).”

When the 24 trials that relate to Stanislaw Burzynski, M.D., Ph.D.'s antineoplastons (which are not purely of natural origin) are subtracted, a grand total of three are focused on improving survival. That represents 0.04% of the total number of trials.

The Cancer Monthly article concludes with this analysis:

These numbers speak volumes. Alternative therapies represent a small minority of cancer clinical trials and only a smaller number of these are focused on whether they are viable treatments. While there were 3,198 chemotherapy trials, a treatment that has been experimented with for over fifty years, less than 30 trials were focused on natural approaches. This analysis suggests what many observers have been reporting for some time that alternative therapies - stand alone natural cancer treatments have been co-opted into the conventional paradigm. They are no longer seen as potentially powerful treatments in their own right, but rather "add-ons" to ameliorate the side effects or improve the quality of life for patients who receive the toxic conventional treatments.

I couldn't have said it any better. In fact, I have been writing essentially the same thing for the past several years. Cancer Monthly has now provided another smoking gun representing evidence for the contention that primary alternative therapies – in this case, alternative treatments for cancer – are an endangered species.

The Cancer Monthly reporting represents a snapshot of the real picture of cancer trials in the United States. But like all good reporting, it also serves as a jumping off point for what should be a far ranging review and commentary on many related issues.

Initially, I am struck by the tragic irony in the pathetically small number of alternative cancer trials now underway. It was, after all, a major grassroots interest in alternative cancer, reflecting the need for clinical alternatives and the existence of a plethora of credible ones, that helped to propel alternative medicine at large into the political and scientific mainstream in the 1980s.

Lawrence Burton, Ph.D., October 1980, New York, NY Photo © By Peter Barry Chowka

A little history from the period should suffice: In 1985, American cancer patients who were being treated with Immuno-Augmentative Therapies (IAT) in the Bahamas developed by the late pioneering researcher Lawrence Burton, Ph.D., joined by a network of people interested in other natural or alternative approaches to treating cancer, lobbied members of Congress to request a study of the alternative cancer field by the Office of Technology Assessment (OTA), at the time the independent research agency of the Congress.

After a complicated, convoluted, and highly politicized process that dragged on for five years, the OTA published a major study in September 1990, Unconventional Cancer Treatments.

In some ways, the report, which varied wildly in quality depending on which therapy was being looked at, was a major turning point as the government was finally forced to take alternative methods seriously, other than simply dismissing them as it had always done ad hominem.

Within a year, the quiet momentum generated by the OTA report, and the networking that had gone on during the OTA's process, helped to set the stage for the next major development in alt med's evolution, the establishment of the Office of Alternative Medicine (OAM) at the National Institutes of Health at the behest of the of the Congress passing a bill creating the OAM and appropriating tax dollars to fund it.

This validation, as it were, of a field that had always, in the memory of its proponents, been officially neglected if not outright suppressed was like the news that “there's gold in them thar hills” in 1849.

Very soon, the OAM's funding increased, from a paltry $2 million a year to $120 million annually in 2007 as its successor, the National Center for Complementary Alternative Medicine (NCCAM), grew in power, reach, and hype. One estimate is that the federal government has spent close to $1 billion funding CAM since 1991.

Recently, the NIH appointed a new director of NCCAM, Josephine Briggs, M.D. In an open letter to Briggs on January 25, 2008, CAM proponent and blogger John Weeks wrote “Oops, they did it again. . . Your predecessor, Stephen Straus, MD, also had no experience in complementary and alternative medicine. He told the New York Times during his tenure that he had no plans to experiment. . . Now, a decade later, the NIH has done it again. [NIH] Director [Elias] Zerhouni appointed you, despite the fact that you too have no visible professional experience in the field that you were selected to lead. Of your 125 publications, none appear [sic] to touch on the kinds of interventions which will be on your desk at your new job.” Weeks has subsequently met with Briggs and announced that “I liked her,” although in his account of his sit down with Briggs he quotes his advisor Bill Manahan, M.D.'s critical comment that “NCCAM is wildly out of compliance with some 17% [of its advisory panel drawn] from CAM disciplines when it should be 50% plus.” Keep in mind, this is the safe, integrative, non-threatening complementary alternative medicine or CAM they are talking about, too – not primary alternative medicine.

Even a cursory look at the NCCAM's Web site confirms that NCCAM's heart is not in alternative medicine. In fact, it has often struck me as a more mainstream, palatable version of a quackbuster Web site.

The recently added NCCAM “Image Gallery,” consisting of photos documenting CAM and presumably Alt Med, is mainly limited to depictions of non-threatening integrative modalities like Tai Chi, Reiki, Yoga, Massage, and Mind Body Medicine. Interestingly, the first OAM advisory panels that were held in 1992-'93, starting with the one at the luxurious Westfields Conference Center in Chantilly, VA in September 1992, which I and about one hundred colleagues in the field participated in by invitation, put these kinds of therapies at the bottom of the list of ones that should be studied.

Meanwhile, other parts of the government are getting involved in funding CAM, too, including of all places the U.S. Army. The Defense blog at Wired.com reported on March 25, 2008 that

The military is scrambling for new ways to treat the brain injuries and post-traumatic stress of troops returning home from war. And every kind of therapy -- no matter how far outside the accepted medical form -- is being considered. The Army just unveiled a $4 million program to investigate everything from “spiritual ministry, transcendental meditation, [and] yoga” to “bioenergies such as Qi gong, Reiki, [and] distant healing” to mend the psyches of wounded troops.

Back to the NCCAM: Among the recent “highlights” noted on the NCCAM home page are items like “Black Tea Shows No Impact on Cardiovascular Risk Factors,” “FDA Warns Consumers Not to Use 'Blue Steel' and 'Hero' Products,” etc. The recent NCCAM page on St. John's Wort and Depression (December 2007) seems to put the most negative spin possible on the research about the popular herbal supplement.

A page “December 1 is World AIDS Day” mentions several typical new NCCAM-sponsored clinical trials, including “A Mindfulness Based Approach to HIV Treatment Side Effects” and “Acupuncture and Relaxation Response for GI Symptoms and HIV Medication Adherence.”

The loser in this myopic focus on – and the waste in the federal money thrown at – CAM is primarily potentially curative alternative medicine – including the methods that got the whole CAM bandwagon started in the first place!

In 1999, it was announced with great fanfare that the federal government had awarded an unprecedented $1.4 million grant to conduct a prospective clinical trial of the nutritional cancer therapies of Nicholas Gonzalez, M.D. (I have written extensively about Gonzalez and his research efforts, including this feature article published in April 2002 in Alternative Medicine.) Nine years later now, Gonzalez, as far as I know, has not commented publicly about the lack of news about or apparent lack of progress of this important research effort. Indeed, all mention of the study appears to have been removed from Gonzalez's Web site (see in particular this page on “Research Efforts”). And the page about the trial at NCCAM's site has not been updated since November 2005.

These examples and citations, and many many more that there is not room here to catalog and mention, point to the slow but inexorable diminution of alternative medicine in favor of, at best, light and non-threatening approaches like CAM and integrative medicine.

Above the down and dirty level of things like government financing and commercial influence of medical research in this country (and that would include the politically correct groupthink universe of mainstream academia, as well) is a critique – too rarely heard, except here and in a few other places – of the “new orthodoxy” of CAM. One exception to the excessive conformity that characterizes science today was an article published September 1, 2006 in the Journal of Alternative and Complementary Medicine Vol. 12, No. 7 : 679 -683, “Challenging the New Orthodoxy in Integrative Medicine” by Peter D. Mackenzie-Cook.

To quote the article’s abstract:

“This paper offers a critique of the paradigm adopted in integrative medicine. Several concerns are raised in relation to this paradigm, including the absence of any explicit and well-defined criteria for appropriate therapeutic selection or referral, inherent biases, and the significantly reduced clinical efficacy of the traditional and alternative therapies utilized. In particular, the obvious lack of a clear and cogent theoretical model for integration is noted. The central features of existing models in world medicine are outlined, and the requirements for a universal model are discussed in relation to its capacity to address the specific concerns are raised. To develop this model fully, the need to reopen critical debate on the nature of medicine, and for rigorous model testing and peer review, are noted and the challenge to do so is delivered.”

The content in the body of the article is extremely hard-hitting. In one of my favorite parts, Mackenzie-Cook writes: “We might ask then how anyone could possibly think of this relationship [between alternative and conventional medicine] as ‘integrative.’ To answer this, we may recall that the word ‘integrative’ involves an ambiguity. We tend to think that integration embraces equality among its parts, that mainstream medicine is just one of the partners in creating the widely hoped for world medicine. Because of this, we forget that corporations, prisoner of war camps, and slave-based societies can also be described as integrated.

“As shocking as it may seem to lump integrative medicine together with such examples, consider that. . . bosses, camp commanders, and slave owners are never on an equal footing with employees, prisoners of war, and slaves. Consider also that, like [Andrew] Weil’s vision of integration, the philosophy of the underdogs is irrelevant: It only matters that they perform a hierarchically designated function in the larger scheme. The corporate aspect of the analogy is also relevant. Alternative and traditional medicine has become extremely big business in the health care ‘industry,’ and integrative medicine stands to benefit greatly from the association.”

Where the rubber meets the road, as it were, that is, at the level of patient-clinician personal encounters, options for truly alternative care (the public's ever growing interest and mostly out of pocket financial support of CAM therapies notwithstanding) are diminishing. This curious anomaly is affecting professions once devoted to natural therapeutics, like licensed naturopaths in the United States.

The comments of Robert Broadwell, N.D., a veteran naturopath in Southern California, given to me in an interview in September 2003 as official naturopaths were gaining licensure in the nation's largest state, were prescient.

“One thing we have to be very careful of,” Broadwell said, “is [repeating] what happened to the osteopathic profession when they were accepted in and they were commissioned in the [military] services and all of that stuff. And osteopathy in any meaningful sense doesn't even exist today. And I think we're moving toward that in naturopathy. The more we insist on HMO-type care or the [insurance] coverage care, the more ridiculous it becomes. I refuse to use the term 'complementary medicine' in any sense of the word. I provide an alternative in all cases except a few such as in the treatment of cancer where my primary activity is in overcoming the negative aspects of the chemotherapy, for example. I guess you could say that's 'complementary.' But in 99 percent of the cases that come in and out of this office on a daily basis, it's an 'alternative to.'

“Someone was asking me the other day what we could do to keep naturopathy alive. And I said, from my own perspective, you're talking about something that's already dead.”

Michael Horwin testifies before House Committee on Gov. Reform, June 7, 2000

And it's at this point that I get back to Michael Horwin, whose Web site and report provided the inspiration for this article. On June 7, 2000, Michael Horwin and his wife Raphaele were invited to appear as witnesses at a hearing on “Cancer Care for the New Millennium – Integrative Oncology” before the House Committee on Government Reform, chaired by Rep. Dan Burton (R-IN). An archive version of their opening statement is here. A year and a half earlier, the Horwins' two-year old son, Alexander, died in his mother's arms after a five-month long struggle with medulloblastoma, a virulent form of brain cancer. The Horwins did everything they could to help Alexander, mainly relying in good faith on conventional oncologists who treated Alexander with intensive chemotherapy following surgery.

Even before Alexander passed away, Raphaele and Michael Horwin were increasingly concerned about their son's treatment, which didn't seem to be helping him and, they feel in retrospect, may have shortened his life. After Alexander's death, his parents continued and accelerated their extensive research into “state of the art” chemotherapy protocols for children with brain cancer, hoping to better understand and elucidate not only what happened to Alexander but also the reality of the similar situations that face thousands of children newly diagnosed with brain cancer every year and their families.

After Alexander's death – nine years ago now – the Horwins completely changed their lives. Michael Horwin quit his job. The couple moved to San Diego, and Michael earned a law degree. In 2002, an article Horwin wrote, “War on Cancer: Why Does The FDA Deny Access To Alternative Cancer Treatments?,” won the Scribes Law-Review Award by the American Society of Legal Writers for the best student-written article published in a law review or journal that year. Raphaele Horwin, meanwhile, studied to become a forensic scientist, in order to better evaluate the medical literature, particularly on the issue of cancer survival statistics.

In January 2005 the Horwins joined with other volunteers to start Cancer Monthly, a new, free online cancer information resource. Their efforts were described in a feature article by Kristen Philipkoski on January 3, 2005 at Wired.

Today, in light of the new report in Cancer Monthly about the stunning lack of support for outcome based research on truly alternative (non-toxic) cancer therapies, I am reminded of a conversation I had with the Horwins back in June 2000 at the time they were testifying before Congress. Many of their comments, considered almost eight years later now, were incredibly prescient and, unfortunately, are still applicable today, with even greater urgency.

Peter Barry Chowka: How did you cope — are you coping — with this unimaginable loss of your only child?

Michael and Raphaele Horwin: When Alexander died a horrible death, my husband and I could not believe what had just happened to him in only six short months. When you see your child struggling to stay alive and he dies right in front you, you can never be the same again. Our son was our life and now we felt that our life was gone with him.

We watched what chemotherapy did to our son — we watched it destroy him and rob him of any chance he had to fight and overcome his disease. When the cancer came back and killed him while he was on chemotherapy, the physicians called it “leptomeningeal progression.” As soon as we returned home after the funeral, we began doing research on leptomeningeal progression and medulloblastoma. We used Medline and the medical library at UCLA. Incredibly, we found articles in the medical literature that discussed how the chemotherapy drugs that Alexander had been given resulted in leptomeningeal progression and death in scores of other children, going back years! We were astounded to find that in the medical literature were literally hundreds of articles in which pediatric oncologists in effect admitted that chemotherapy is both ineffective and toxic in young children with medulloblastoma and other malignant brain cancers.

Chowka: What are the greatest myths in our society about cancer and its treatment?

Horwins: That chemotherapy and radiation represent a “cure,” and the only cure for brain cancer. This is nonsense, unless you consider having a child with serious physical handicaps and being mentally retarded (from the treatment) a “cure.” Pediatric oncologists have given various chemotherapy protocols to children with pediatric brain tumors for almost 25 years and nobody speaks out about the devastating effects and death that almost always follow.

People's attitudes when it comes to cancer are, “Oh, well, how sad it is that your child died of cancer, I guess you will have to move on now.” But it would be an insult to Alexander to tell people that he died of cancer — and to “move on” without sharing his story in the hope of trying to educate and help other parents. Alexander died because he was forced to receive inadequate treatment — that's what led to his death. He died because he was not given the best opportunity to fight for his life. He died because he was not allowed to use the best cancer therapy available.

Chowka: What did you think about cancer before Alexander was diagnosed — and what do you think now?

Horwins: Previously, we never contributed to any cancer organization or official research, and we certainly will not start now. Every year more than $3.5 billion is spent on cancer research in this country. Most of that is taxpayers' money, so I guess we're supporting cancer research even though we don't choose to.

We should ask ourselves, Who profits from this money? Isn't it interesting that, after 50 years of chemotherapy and 100 years of radiation, cancer is still almost always a death sentence? When you think about this fact and look at all the truly effective cancer therapies proposed and utilized by innovative scientists and physicians that have been quietly destroyed, you realize that money rules the day. We accept this with other industries. For example, we accept that we won't have solar energy or electric cars until the oil companies and automobile manufacturers decide that it's time — that it will be good for their bottom line. We should also be able to see that the drug companies will give us more options — innovative, nontoxic therapies for cancer — only when chemotherapy and radiation are no longer profitable. In the meantime the medical monopoly continues to use its tremendous political influence to make sure that all effective competition is crushed. That means that thousands of children will die needlessly, not to mention hundreds of thousands of adults. The problem isn't that we need to spend “more money.” We've spent billions already! There are better answers out there. The problem is no freedom.

Chowka: Could you describe your intentions now, a year and a half after Alexander's death? What are your objectives, plans, and hopes for your work (and lives)?

Horwins: We want people to understand that the FDA denies children an opportunity to survive by not allowing their parents to use the therapies that have the best chance of saving their child's life. We also want people to understand that for children, chemotherapy and radiation are not options, but (in the eyes of the government) are mandatory. Children will be forcibly taken away from their parents if the parents do not want chemo and/or radiation to be used. We also want the public to know that oncologists will lie to parents about their therapies. Simply compare what an oncologist tells you to what they have written in their medical journals and you'll understand what we mean. We were told that our son Alexander would be receiving “state-of-the-art” chemotherapy which had saved or extended the lives of many many other children. But the truth is that oncologists had admitted in their medical journals that the chemotherapy given to Alexander was the same chemo that had been used alone or in combination for over twenty years and it was ineffective and toxic. What we were told is the same lies that thousands of other families are told and continue to be told. The reality is that Alexander's two-year old body was used for medical experiments that had proven to be ineffective years before in pediatric brain tumors. This barbaric practice will stop only when people are made aware of what has been happening for a very long time and take some steps to stop it.

Chowka: Most people who have a loved one die from cancer grieve and move on — or at least they don't get involved with the issues as you have. Why have you chosen to dedicate yourselves to these issues?

Horwins: How can you not do this, when you had your child in your arms, taking his last breath, and you find out that he died because he received the wrong treatment? How can you close your eyes to what happened to your child and just move on? That would be an insult to the magnificence that was and will always be our son, Alexander. And what happened to Alexander happens to thousands of other children. It violates the provisions of the United Nations' “Rights of the Child.” It violates The Nuremberg Code. It violates the rights and responsibilities of parents to fight for their child's life when he's sick. It violates every aspect of what it means to be a loving parent and virtuous human being. That all of this is going on in our country is beyond belief. We will never stick our heads in the sand and make believe that what happened to Alexander and thousands of other children is okay.

Some parents can't handle the truth, so they fabricate a cover story in their minds. A mother told us, “My son did very well on chemotherapy. My son still had quality of life.” Her son was three when he was diagnosed with a medulloblastoma. He received a chemotherapy protocol and even an autologous bone marrow transplant because the chemo dose was so high it destroyed his bone marrow's ability to make blood. Then her son was diagnosed with tumors in the brain and spine and he died. The words that she was telling us were not her words. They were the words of her pediatric oncologists. We know this because we were given the same ludicrous affirmations —propaganda designed to mask the truth of watching your child be destroyed in front of your eyes by the treatment, not by the cancer.

Chowka: For people reading this who have not (yet) been directly touched by cancer as you have: What would you say to them, as they go about their day to day lives (since inevitably they will have to deal with cancer at some point)?

Horwins: People think their children won't get cancer. We certainly felt that way. But cancer is now the number one killer by disease of children in the U.S. and brain cancer is the fastest growing form of pediatric cancer. Become aware. Don't be caught by surprise. Learn about these issues now and if you're fortunate, this information will never be needed. But if you're not lucky, you'll be prepared.

If you are parents of a child who has cancer and who is under the age of eighteen, make sure that you get a good lawyer who is familiar with family law. Tell your oncologist that you want to speak to parents whose children received the same chemotherapy treatment and/or radiation that he is prescribing for your child, and who are still alive five years or ten years after. That will probably tick off the oncologists because they usually can't come up with anyone's name. When you have a meeting with the oncologists, ask if you can tape the conversation openly because your wife or husband could not make it. When they know they are being taped they will usually give you something closer to the truth about your child's prognosis. Do your research on all of the chemotherapy drugs the oncologists want to give to your child. Make sure you know how long these drugs have been used in conventional medicine. Get copies of your child's medical chart — you will be able to see what doctors write about you and about the prognosis and to each other.

Whatever your particular cancer, please do your research. Use Medline or spend some time in a university medical library and read what oncologists write for and to each other in their prestigious medical magazines. Ask to talk to patients who have gone through exactly the same chemotherapy protocol and radiation treatment, and make sure that these former patients have been out of trouble for at least five years or more. Read books on alternative treatment, as many as you can. Pay close attention to the therapies that have been shut down or restricted by the government. As unusual as this may sound, suppression of an alternative therapy often is a reliable indication that the therapy has value.

Chowka: Did you get any meaningful help or assistance from representatives of “alternative medicine” when Alexander was ill?

Horwins: Not really. The alt med field can be just as corrupt as the orthodox side. Just like the mainstream oncologists, there are many people who will sell you hope and give you unsound information for money.

We spoke to many, many people in the alternative field. The first couple of months after Alexander's diagnosis, our phone bill went from $100 a month to $1,200 a month. The advice one receives can be terrible. One lady who is very prominent in the alt med field said, “Just take him to Mexico” as if he would be instantly cured as soon as we crossed the border. After a whole day spent visiting the clinics in Tijuana, we found no one there with any experience in controlling or curing Alexander's type of tumor. We know many parents who ended up in Mexico and the treatment their children received was awful!

Some doctors in the alternative field are glad to speak with you for free while others insist on your credit card billing information first. Unfortunately, the best alt med physicians are forced to refuse to speak with you or to accept your child at their clinics because they are all too aware of the implications of treating a young child with cancer. They could have their licenses revoked or worse if they don't use standard chemo and/or radiation.

Parents should be wary. Be careful of people who want your money. Some individuals with absolutely no medical backgrounds have formed professional-sounding organizations and set up Web sites. They promise that they will give you credible referrals for $300 or $400. You can find most of these same referrals in a good alt med book for $12.95.

It is a dirty world out there when you are trying to save your child's life. Many people from the worlds of alternative and orthodox medicine alike will want a piece of your son or daughter.

Chowka: What are your impressions of the alt med scene now?

Horwins: The alt med world is a fragmented mix of good-hearted but largely powerless people who genuinely care and many other relatively powerful but self-serving people who do exactly what oncologists do — use hope and death to make money and build careers. This latter group has done a tremendous disservice to us all. Cancer will soon be the leading cause of death in America. Despite all of the hype and photo ops, the self-promoting newsletters and books, and self-styled experts jumping from bandwagon to bandwagon, things are worse now, not better. For children with cancer, there is less freedom to use alt med today, not more. Many alt med “leaders” have built little empires for themselves at the expense of patients. Sadly, with opposition like this, orthodox cancer therapy has very little to fear.

Peter Barry Chowka is a widely published writer and investigative journalist who writes about politics, health care, and the media. Between 1992 and 1994, he was an advisor to the National Institutes of Health. His Web site is: http://chowka.com