Behind the scenes of Stand Up to Cancer
Friday night, the nation witnessed the complete control over print and broadcast media for a star-studded cancer fundraiser. No one doesn’t care about those who suffer and die from cancers, of course. Nor does anyone want to appear not to care. So the fact that cancer is now literally the cause-celeb and that we heard only one unified message shouldn’t surprise us. While more than $100 million dollars was successfully raised by this event, we would be remiss to believe we heard the full story or accurate, balanced information. In fact, what we didn’t hear offers some of the most important and cautionary information.
Manipulate our fears and emotions
Like all advocacy groups, heightening the dangers and seriousness of their cause is fundamental to justifying the need for more and more money to address it. After an hour of watching Stand Up to Cancer, if you weren’t in tears and scared to death that you or someone you love might already have cancer or be next to die if researchers don’t get money now, you weren’t watching. Even the program's website* has five pages of terrifying statistics on the deadliness of the cancer epidemic.
Unlike the repeated claim of a “growing crisis of cancer,” however, all facts paint a far more optimistic and hopeful picture. But any balance was missing in this program.
We didn’t hear that by all government statistics, cancer deaths have been dropping for decades. According to the latest National Cancer Institute Fact Book, cancer death rates between 1995 and 2004 dropped significantly for the most serious 19 cancers, with no statistical change for another six cancers, and rose only 0.6% for thyroid.
Heartbreaking childhood cancer deaths have seen the greatest declines. According to the latest Health United States 2007, issued by the CDC, overall age-adjusted death rates for cancers declined more than 12% between 1990 and 2003. Cancer deaths have dropped for all age groups since 1950 — to less than a quarter of what they were for children 4 years of age and under. For adults 35-44 years of age, they’ve been cut in half. The only increases since 1950 has sadly been among the most elderly, 1.13% for those >75 years of age. However, since 2000 even cancer deaths among elderly have been showing improvement. Among those 85 years and over, for example, cancer deaths have dropped by 10% since a high in 2000.
And to keep the good news and how good we have it today in mind, and the sadness in perspective, it always helps to remind ourselves that our life expectancy continues to increase and is the longest in the history of our country.
Prevention and screening fears
Cancer is something people most fear, and the media and stakeholders are expert at leading us to perceive that risks are hidden in everything around us and in everything we eat and do, and that eating right and continual screening and monitoring is the only things that can keep us safe.
What you can do. Ignoring for a moment the political and special interest motivations behind dietary and lifestyle regulations and promotions, and the financial benefits of predatory screening for stakeholders, what people most care about is the facts. Stand Up to Cancer told viewers and website visitors that to prevent and lower their risks for cancers they must: manage stress, eat less red meat, exercise, avoid refined sugars and transfats, eat anti-cancer foods like cruciferous veggies, get a mammogram, colonoscopy and prostate exam.
Anyone who has tried to explain the facts to grieving parents and loved ones, who are distraught with anguish and guilt that they might have done something wrong to cause a cancer; or explain to a loved one with terminal cancer that she/he did not cause their cancer because of something they ate or because they didn’t maintain a positive outlook and surround themselves with positive energy, knows these cancer myths are not innocent and harmless. They are cruel, heartless and wrong. Anyone who’s tried to calm the fears of a young person afraid to eat foods they’ve been told will give them cancer, knows these cancer myths are not harmless.
But viewers heard nothing about the science to balance any of these myths.
Nor did they hear any other viewpoints on the balance of risks, adverse effects and effectiveness of cancer screenings. Nor did they hear about the things that their individual physician might consider in deciding if screening is best for them.
Screening. Friday night, viewers didn’t hear that while cancer screenings, early detection and intervention might intuitively seem to be a good thing, that’s not necessarily the case and is much more complicated. As Dr. Thomas J. Gates, M.D., associate director of family practice residency at Lancaster General Hospital in Lancaster, PA, in the February 2001 issue of the American Family Physician reviewed, various types of biases in research have led to an exaggeration of the efficacy of screening. As he explained, the evidence remains controversial for screenings “for cancers of the cervix, lung, colon, breast and prostate, which together account for more than 50 percent of cancer deaths in the United States.”
PSA screening. Stand Up to Cancer didn’t tell viewers that the U.S. Preventive Services Task Force, after reviewing the research, concluded that the evidence is insufficient to determine if the benefits of prostate screening outweigh the harms for men younger than 75 years of age, or that it specifically recommended against screening for prostate cancer in men age 75 years or older. In its evidential review, it said:
Potential harms from PSA screening include additional medical visits, adverse effects of prostate biopsies, anxiety, and overdiagnosis (the identification of prostate cancer that would never have caused symptoms in the patient's lifetime, leading to unnecessary treatment and associated adverse effects). In 2002, the U.S. Preventive Services Task Force found insufficient evidence to recommend for or against routine screening for prostate cancer. The USPSTF found good evidence that PSA screening can detect early-stage prostate cancer but found mixed and inconclusive evidence that screening and early detection improve health outcomes.
Mammogram. Stand Up to Cancer didn’t reveal to viewers that a Cochrane Collaborative Systematic Review of the evidence on mammograms found policies vary, as do estimates of the benefits and harms. After reviewing trials involving a total of half a million women, it found that the highest quality, randomized trials showed no reduction in breast cancer mortality even after 13 years of follow-up, and only biased studies without proper randomization showed a small reduction in relative risks. The author’s conclusions said:
Based on the risk level of women in these trials, the absolute risk reduction was 0.05 percent. Screening also leads to overdiagnosis and overtreatment, with an estimated 30 percent increase, or an absolute risk increase of 0.5 percent. This means that for every 2,000 women invited for screening throughout 10 years, one will have her life prolonged. In addition, 10 healthy women, who would not have been diagnosed if not screened, will be diagnosed with breast cancer and will be treated unnecessarily. Thus, it is not clear whether screening does more good than harm. Women invited to screening should be fully informed of benefits and harms.
In an American Academy of Family Physicians article for clinicians, Dr. Michael B. Potter, M.D., at the University of California, San Francisco, School of Medicine advised:
Given the uncertainties, clinicians should be prepared to counsel average-risk patients who are considering mammography about the facts related to breast cancer and screening... The Centers for Disease Control and Prevention estimates that a woman's chance of dying from breast cancer when she is 40 to 49 years of age is 0.2 percent; this increases to 0.4 percent for a woman 50 to 59 years of age and to 0.7 percent for a woman 60 to 69 years of age. In 2002, the U.S. Preventive Services Task Force estimated that 1,792 women 40 to 49 years of age must be screened for 14 years to prevent one death, and 838 women 50 to 69 years of age must be screened for 14 years to prevent one death. After considering this information, women who are at average risk of breast cancer may reasonably come to different personal conclusions about having a mammogram.
Colorectal screening. Nor did Stand Up to Cancer viewers learn that there are no published screening trials of colonoscopies, or that compared colonoscopies to a fecal occult blood test (FOBT). A Cochrane Systematic Review of the evidence found data from five trials on FOBT which reported a 16% reduction in relative risk, which translated to 1,173 people needing to be screened to prevent one death after ten years. A systematic review on FOBT for the U.S. Preventive Services Task Force reached similar conclusions, but was unable to find any clinical trials of colonoscopy screening. Instead, the USPSTF analyzed epidemiological data from the National Polyp Study and a case-control study and reported a correlation odds ratio of 0.43 for colorectal cancer mortality, with a perforation risk of one per 2,000. While it recommended screening from the age of 50, it found insufficient evidence to determine which method was best.
Viewers didn’t hear that screening is best discussed with our own doctors to weigh the merits and harms in our individual situations.
While the telethon was said to be to raise money for research, politics were evident, as well. Visitors and viewers were encouraged to join lobbying efforts to write their Congressmen calling for NIH funding to be doubled. Government cancer research was said to be woefully inadequate and evidence of a failed Administration. Viewers were not shown how the NCI’s budget (see figure) has skyrocketed over recent decades and now totals more than $4.74 billion. An interesting fact would have been how much of that is spent on epidemiological computer data dredges looking for endless correlations between risk factors and cancer incidences, rather than clinical trials and laboratory studies.
Stand Up for Cancer also published its Advice for the Next President, written by Dr. Devra Lee Davis, Ph.D., MPH, epidemiology professor and director of the Center for Environmental Oncology at the University of Pittsburgh. She wrote that cancer costs society $100 billion each year and that “we must make prevention the cure for the mounting toll of cancer.” She called for universal healthcare, a larger federal environmental budget and a new prescription drug policy. “While we have finally made some progress on tobacco, other well-known cancer hazards—like asbestos and benzene—remain poorly controlled,” she wrote. She called for a national public smoking ban and “a serious public campaign to identify, control or get rid of asbestos,” as well as follow the European Union in controlling radiation and other carcinogen exposures.
The media partners for Stand Up to Cancer included every major television network, Los Angeles Times media group, Newsweek, New York Times, WebMD and Time, Inc. The program’s sponsoring partners, listed as “Heroes,” included Amgen and GlaxoSmithKline. But these don’t reveal the actual entities behind this orchestrated effort.
Where does the money go?
How many people wonder where their donations are going and who decides how the research money is spent? Are the decisions going to be made by an objective body of experts who will evaluate the scientific merits of the research and its potential benefits for cancer patients? We were told that Stand Up to Cancer supports “translational” research, meaning research that takes a project from laboratory to market, and that a “dream team” will focus on the most promising projects. Does that mean promising for its market potential or because it might offer the most promise in saving lives?
According to the program’s Mission Statement, with the completion of the Human Genome Project, genetic research is the focus of scientific breakthroughs in cancer detection, prevention and treatment.
Viewers and website visitors were told:
Funds will be administered by the American Association for Cancer Research, the largest scientific organization in the world focusing on every aspect of high-quality, innovative cancer research.
But describing AACR as a scientific organization sounds like it’s a neutral organization of scientists. That is far from reality. As the AACR’s website says, it’s “a mutually beneficial partnership” of commercial and nonprofit organizations which sponsor research. “Since 1993, AACR has been proud to serve the needs of its corporate supporters with the AACR Sustaining Membership Program.”
The current AACR Sustaining Members are:
Hoffman-La Roche, Inc.
Schering-Plough Research Institute
Gerson Lehrman Group
Taiho Pharmaceutical Co.
Stand Up to Cancer was, in essence, a telethon to raise money for pharmaceutical companies.
The decisions as to the most promising projects will be made by AACR and its Advisory Committee. Dr. Roy M. Poses, M.D., already itemized the financial ties of the advisory committee members, finding 13 of the 19 members, including the chair and vice-chair, “had multiple and significant financial ties to pharmaceutical and devise companies.” Worse, most of those ties were not disclosed on the Stand Up to Cancer website or television broadcast.
How’s the science?
JFS readers may remember AACR from its recent press release claiming to have found that being fat causes women to have more aggressive breast cancers. One of its researchers was even quoted as advising weight loss to reduce breast cancer incidences. But as we learned, the study data actually reported no statistical correlation between BMI and breast cancer type or survival.
But we can’t judge an organization based on one study. While there is no published review of AACR research or the educational conferences it hosts, what can at least be acknowledged is that its quality is inconsistent, with examples of some troubling directions.
Last November, AACR held its first Cancer Health Disparities conference in Atlanta, Georgia, said to stimulate a new field of public health: “science of cancer health disparities in racial/ethnic minorities.”
The sessions included such discussions as: using genomic markers and genetics to identify cancer disparities, use of biomarkers to detect breast and prostate cancer in African-Americans and cancer patterns in Hispanic populations, breast cancer patterns in Asian-Americans, obesity and colon polyps in Black women, diet and breast cancer in Black women, nutrigenomics and cancer disparities, gene expression profiling in African-American men, genetics and smoking cessation, race and ethnicity in responding to anticancer drugs, racial pharmacogenetics, genetics in mapping disease susceptibility, etc.
Nutrigenomics believes certain foods and supplements have special health-promoting qualities and can be prescribed for specific genotypes to “optimize health” and prevent diseases of aging. According to Helen Wallace, Ph.D., Deputy Director of GeneWatch UK: “For most people, tailoring your diet to your genetic make-up is about as scientific as tailoring your diet to your star sign.” Nutrigenomics [reviewed here and here] is not the only questionable research direction that may have concerned you.
Most disturbing is that race and ethnicity as a marker for biological weaknesses and disease risks has resurfaced as a line of research and public health policy.
Since the work of Richard Lewontin, a Harvard geneticist in the early 1970s, and others, scientists have recognized that race is not a scientific concept, but a social-cultural one. The majority of human genetic variation occurs within, rather than between, groups. The human species is 99.9% the same genetically; with the remaining 0.1% of variation accounting for physical differences (features and disease risks), casting doubt on any future efficacy of pharmaceutical and biomedical interventions based on genetics or race/ethnicity. The tiny 0.1% variations in genetic differences among peoples aren’t consistently represented by racial designations.
As the Council for Responsible Genetics wrote, “a range of new genetic technologies has added a somewhat complicated feature to concepts of biology, race, and human rights.” While some companies claim they are not conducting “race tests,” they wrote, a growing industry is emerging that is doing exactly that and confusing notions of race and biology.
If you read nothing else, read and think about the Council for Responsible Genetics’ overview of the “History of Race and Science.” It begins, in part, explaining:
Whether an individual was designated black, white, yellow, red, or of any other racial/ethnic group, depended upon the cultural context. For instance, the “one drop of blood” rule, employed in the southern part of the United States during the eighteenth and nineteenth centuries, stated that an individual with any non-white ancestry was “black.” The rule was based on the belief that the races had different kinds of blood as well as corresponding social and intellectual capacities... Historians have argued that science was being used as a vehicle to substantiate socially constructed racial hierarchies. Tying race to biology served to further strengthen the idea that some groups were superior to others...
Perspectives such as this carried through the Darwinian revolution of the mid-nineteenth century when social philosophers such as Herbert Spencer re-cast the theory of evolution to explain the social hierarchy of races as an outgrowth of natural selection. A contemporary of Darwin’s, Spencer introduced the concept “survival of the fittest” which advocated against social reform movements that aimed to improve the circumstances of individuals at the bottom of the social hierarchy, often non-Whites and the poor. The social hierarchies of the day were rationalized as a result of inborn “natural” divisions between the races that had evolved over time. These racial hierarchies became reified into concepts which early researchers utilized as a foundation in their study of the human species. Termed “eugenics” by Francis Galton, this new strain of thought placed emphasis on heredity as a path to the further improvement of the human species. These ideas were celebrated at the time and came to pervade both the scientific and political landscape during the early part of the twentieth century. Social policies, based on this new “science” of heredity, were enacted in an effort to perfect human populations through controlled breeding practices. Some of these involved tighter immigration policies and segregated schooling. Others were more extreme—involuntary sterilization of members of particular racial groups, the mentally ill, criminals, etc...
In opposition to eugenics, a counter-movement was forming and slowly gaining popularity among groups of scientists, anthropologists, philosophers, and social theorists throughout the world. The gathering of representatives from over fifty countries to discuss the effects of eugenics at the Universal Races Congress in 1911, held in London, represented one of the earliest collective efforts to discredit the “race as biology” perspective... One of the many results of this first congress was a declaration proclaiming the equality of all peoples of the world regarding human endowments...
This paper goes on to explain race, ancestry and health disparities in more detail, explaining the science that health disparities do not lie in racial genetics and physical traits, but differences in treatment, access to health care, socioeconomic status and environmental factors. It also discusses the controversies surrounding race-based pharmaceuticals and personal genetic histories.
The Social Sciences Research Council cautioned that “the subject of race and genomics warrants critical reflection and debate among researchers” and hosted a 2005 forum, “Is Race Real?” with papers by various genome researchers and scientists from a range of disciplines.
The second AACR conference on the Science of Cancer Health Disparities takes place next February in Carefree, Arizona. According to the program, its theme is racial and ethnicity in cancer, including “tumor biology, genetics, hormonal status, lifestyle and behavior, screening policies, comorbidities, environmental exposure and risk, quality of and response to therapy, and post-therapeutic surveillance.”
For years, AACR has also hosted conferences called Frontiers in Cancer Prevention Research. This year’s program, on November 16-19, includes sessions such as Energy Balance and Physical Activity (obesity and cancer), Epigenetics and Genome-wide Screening, and Integrative prevention. Doctors will earn 26.75 course hours of continuing education with proficiencies that includes identifying the key factors to cancer risk “such as age, heredity, racial/ethnic disparities, and nutrition.” While gene mutations have been linked to a few specific cancers, according to MD Anderson, “most cancers occur by chance or sporadically” and are not inherited.
Despite the growing interest in genetic surveillance and screening to identify those who might be at risk for later developing cancer or other diseases, as researchers at Johns Hopkins Kimmel Cancer Center reported just this past week in Science, the genetic links to cancers are considerably more complex than anyone previously thought. Examining two of the deadliest forms of cancer, they found a typical glioblastoma had about 60 different mutations, and a pancreatic tumor had 63, but “no two patients had the exact same set of mutations.” One of the researchers said “if you have 100 patients, you have 100 different diseases.” The science adds a special caution for consumers on genetic tests being sold to the general public claiming to tell if they’re at risk for cancer. Please note that this is not to demean valuable cancer research into genetic mutations and replications that may lead to more effective treatments, but that basic science can take decades of research before it finds its way to a treatment. [Their study, they said, may help focus future research efforts on pathways, rather than individual genes, for treating tumors.]
© 2008 Sandy Szwarc. All rights reserved.
*The website is glitchy, with pages disappearing and/or nonfunctional and different ones appearing each day, so this information is based on what appeared Friday night.