If you want to be a patient who can take charge of her own treatment, you need to have a basic understanding of how cancer research works, so you can use it to make decisions about your care.
The gold standard for scientific research is the very large, double-blind experimental study. What this means is that there is an experimental group that is receiving the treatment we want to study, and one or more control groups that are either receiving a different treatment or a placebo. The larger the group of subjects, the more reliable the results, and subjects must be randomly assigned to the groups in order to make sure there are no differences between them other than the treatment. Double-blind means that the subjects do not know which group they are in, and neither does the researcher. This helps control for bias. This type of study is considered the gold standard because it provides the best hope of an objective result. However, the large double-blind study is not always appropriate:
One issue is ethical. For example, if we wanted to study whether babies’ exposure to hormones in food affects their risk of cancer, it would not be ethical to randomly assign babies to the hormone and non-hormone groups, if we suspected that the hormone group would get cancer as a result. The only thing we could do is find a group we know were already exposed to hormones when they were babies and a group who were not, and see what differences there were. Unfortunately, this study could probably never be done. Hormones occur naturally, including in breast milk, so babies would have a certain level in their blood to begin with. Those who consumed added hormones from food would likely have higher levels, but since the consumption occurred in the past, it would probably be impossible to sort out exactly how much hormones the subjects got, what type of hormones they were, at what age the exposure occurred, or for how long. Also, since the subjects were not randomly assigned, there might be other differences between them that could affect cancer risk. For example, one group might be living in an area with more cancer risk from other sources, such as air or water pollution. This kind of complexity is a big problem with cancer research.
There are also practical issues that prevent the use of large experimental studies. For example, when we try to find out whether people who eat organic food have different rates of cancer than those who eat the standard American diet (SAD), we cannot randomly assign subjects. This is because it is not really possible to control people’s lives to the extent of dictating everything they eat, especially since the study would have to be very long term in order to be meaningful. So researchers have to do the next best thing, which is to take groups of people who report already eating organic food and compare them to groups of people who report eating the SAD. There are several problems with this kind of study: First, we have to rely on subjects’ reports of what they are eating, which may or may not be accurate. Second, hardly anybody eats 100% organic food; it would be hard to assemble a group of subjects who did. Third, since the groups were not randomly assigned, there might be differences between them other than their diet. For example, people who eat organic food might have more money than people who eat the SAD. Richer people usually have many factors that could lead to better health in addition to their diet, such as getting better medical care, living in less polluted neighborhoods, etc.
The medical profession tends to rely on the large, double-blind studies and to ignore any evidence from other types of research. This is the likely reason that so many oncologists do not recommend organic food and why they ignore environmental toxins. In their minds, there is no research to support those things. In my mind, they are turning a blind eye to what should be the most important part of their jobs, which is the prevention of cancer and cancer recurrence.
Also, there are things researchers just don’t seem to want to study. For example, I imagine that most oncologists have seen cases of unexplained remissions, as well as cases of different patients who have had the same cancer and even the same doctor, and some of them got better while others died. Doctors don’t know why these things happen, and since they don’t have any theories, they don’t give these events the attention they deserve. In my opinion, there are the very things that most need to be studied.
However, the most important thing to remember about cancer research is that most things are simply too hard to study. Cancer appears to be caused by the cumulative effects of toxins in the food and the environment, radiation, life style choices, and genetic factors, and it usually takes many years to show up. Scientists do not know how to design studies that can measure the influence of all those things. If you try to measure one of them in isolation, for example a particular pesticide in food, it may not look too dangerous, but when that pesticide is added to everything else, it can be the thing that tips the balance into cancer.
There is also bias caused by the type of funding that is available, and I have to say that I was surprised by the difficulty of finding the sources of funding for cancer research in the U.S. in recent years. I looked for statistics showing how much was funded by federal and state governments, how much by corporations, and how much by charitable organizations and individuals. I simply could not find this information, and finally, I contacted the Library of Congress. A librarian sent me some sources of information, but not enough to get an overall picture. She said that the Library’s funding has been cut so severely that she did not know if she had the staff to ever be able to pull together this information. So here is the best I could do:
The National Cancer Act of 1971, which launched the War on Cancer, established a model of public-private cooperation built around a nationwide network of research laboratories and cancer centers. The National Cancer Institute (NCI), which is the federal government’s principal agency for cancer research and training, is part of the National Institutes of Health (NIH), which is one of 11 agencies that compose the Department of Health and Human Services (HHS). The NCI was established in 1937, but the National Cancer Act of 1971 broadened its scope and responsibilities and created the National Cancer Program. As of 1974, the NCI was the largest source of support for cancer research. Although the NCI’s budget has steadily increased over the years, other sources of funding have expanded faster, especially pharmaceutical companies and biotechnology. Companies belonging to PhRMA (Pharmaceutical Research and Manufacturers of America) surpassed NIH/ADAMHA in funding cancer research in about 1992. (ADAMHA stands for Alcohol, Drug Abuse, and Mental Health Administration.) PhRMA members are the large pharmaceutical companies and most of the largest biotechnology companies.13 The biotech firms that did not belong to PhRMA also increased their funding.
There are four types of non-profit foundations that fund cancer research: independent endowments and funds, corporate giving foundations, community-based donors, and voluntary health organizations, which collect donations from the general public. The American Cancer Society (ACS) is the largest voluntary health organization, but the number has been growing rapidly.
There has also been rapid growth in advocacy groups for specific diseases and cause-related marketing (CRM) in corporate giving. CRM refers to mutually beneficial collaborations between corporations and nonprofits. CRM is different from corporate philanthropy because the corporate money is not a tax-deductible gift to a nonprofit. The corporation benefits from a potentially improved image and reputation which they hope will increase brand loyalty and boost sales. The nonprofit benefits because it is getting more money and more publicity. We see an example of CRM every October when all kinds of products wear pink ribbons in return for donations to cancer organizations (and when these products contain environmental toxins and potential carcinogens, this nefarious practice is called pinkwashing).
It is important to understand that the organizations that provide the funding determine the type of research that will be done. Obviously, PhRMA is going to want research on pharmaceuticals, and it is going to want research results that will help its member companies turn a profit. Corporations can’t remain in business unless they provide substantial returns to their shareholders. The clinical trial process is the main type of research used to prove the safety and efficacy of drugs, and the pharmaceutical industry funds approximately 60 percent of all clinical trials. The medical community is forced to rely on the industry to develop the drugs that the public needs because the funding available from government and private sources is insufficient. According to Drugwatch, the industry takes advantage of its power and places huge pressure on researchers to design biased studies and misrepresent findings, and generally put profits ahead of patient safety.
One of the top obstacles to patient safety is called publication bias. This means that studies which have results that the industry considers favorable will have a higher chance of being published than studies with unfavorable results. According to Drugwatch, researchers have completed an estimated one million clinical trials since 1948, but they only published half of those studies. If research findings that a drug may be ineffective or dangerous are hidden from the public and the medical community, doctors will unwittingly prescribe drugs that can harm their patients. Drugwatch mentions the example of the drug Lorcainide, which was prescribed to suppress abnormal heart rhythms. In a clinical trial in 1980, nine times as many patients died on Lorcainide than they did on a placebo, but the study was not published until 1993. Although the manufacturer stopped the drug’s development for commercial reasons, other companies developed similar antiarrhythmic drugs, and doctors prescribed them to patients after heart attacks. Throughout the 80s, an estimated 20,000 to 75,000 people died every year from these drugs. When the study was finally published, the drug was taken off the market. If the researchers had published in 1980, thousands of lives might have been saved. The only way we know about the negative findings for Lorcainide is that the study was finally published. There are no doubt comparable negative studies about other drugs that have never been published, and we have no way of knowing.
One possible solution to publication bias would be to require researchers to publish the results of every trial. However, PhRMA has refused to agree to this. Eventually the federal government stepped in and mandated that trials regarding serious or life-threatening diseases be published on ClinicalTrials. gov, the government’s clinical trial database. However, Drugwatch says that studies indicate that researchers don’t comply with the mandate.
Another tactic reported by Drugwatch is creating desirable results by designing clinical trials in ways that make their drugs appear to be successful. The American Journal of Psychiatry reported that 90 percent of 32 clinical trials for atypical antipsychotic drugs reported favorable results for the companies that made them. However, companies obtained those results by tampering with dosages of competing drugs or treatments; researchers would give participants doses of competing drugs that were too low or too high to be effective.
I could provide many more tactics and examples, but I think the point is made.
Research has become so corrupt that the editors of the two scientific journals that are generally considered the most prestigious, The Lancet and The New England Journal of Medicine, felt a need to speak out.
Much of the scientific literature, perhaps half, may simply be untrue. Afflicted by studies with small sample sizes, tiny effects, invalid exploratory analyses, and flagrant conflicts of interest, together with an obsession for pursuing fashionable trends of dubious importance, science has taken a turn towards darkness.
It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.
To make matters worse, a study was published in JAMA (Journal of the American Medical Association) showing that the FDA, which is supposed to be the government watchdog, routinely covers up cases of fraud that it finds in medical research studies. The author of the study discussed the results in Slate as follows:
When the FDA finds scientific fraud or misconduct, the agency doesn’t notify the public, the medical establishment, or even the scientific community that the results of a medical experiment are not to be trusted. On the contrary. For more than a decade, the FDA has shown a pattern of burying the details of misconduct. As a result, nobody ever finds out which data is bogus, which experiments are tainted, and which drugs might be on the market under false pretenses. The FDA has repeatedly hidden evidence of scientific fraud not just from the public, but also from its most trusted scientific advisers, even as they were deciding whether or not a new drug should be allowed on the market. Even a congressional panel investigating a case of fraud regarding a dangerous drug couldn’t get forthright answers. For an agency devoted to protecting the public from bogus medical science, the FDA seems to be spending an awful lot of effort protecting the perpetrators of bogus science from the public.
So who can you trust? I personally know people who have become completely disillusioned with the cancer industry and the medical and pharmaceutical industries in general, but they trust alternative practitioners like chiropractors, acupuncturists, naturopaths, and the few medical doctors whose work is completely outside the establishment. In my view, this is also a mistake. The truth about most professions is that there is a normal curve (also known as a bell-shaped distribution because it is very small at both ends and very big in the middle). That means that a small number at one end of the bell are unusually good at what they do. An equally small number at the other end are unusually bad, and the vast majority are in the middle, or average range. So, whether we are looking at mainstream practitioners or alternative ones, we have to rely on our own judgment, based on whatever evidence we can scrape together. There are no guarantees. However, I think it’s probably a safe bet that the mainstream oncology profession is worse than alternative groups that deal with cancer when it comes to considering new treatments and advising their patients about carcinogens in food and the environment.