Busted! Breast cancer, money and the media Part eight: How Zero Breast Cancer pays its bills

12/23/2015

In the mid-1990s, white women in the Bay Area believed they were being targeted by an epidemic of breast cancer with an epicenter in the sun-sculpted hills of Marin. The source of their fear, the press, had relied on claims by the Cancer Prevention Institute of California that the region’s high incidence rates were exploding in white suburbia without rhyme or reason.

But when scientists with the Centers for Disease Control determined that the so-called epidemic was an artifact of women in one of the wealthiest regions of the country getting more mammograms than average, an alliance of local epidemiologists, politicians, activists and media outlets shouted them down, accusing the agency of covering up a cancer cluster.

The high incidence rates, as repeatedly reported by the Cancer Prevention Institute, did not correspond to the actual burden of breast cancer in Bay Area communities—which is better reflected by mortality rates.

Marin’s breast cancer mortality rates were relatively low; incidence rates were kept artificially high because women who could afford expensive health care were being billed for overdiagnoses and overtreatment. The cancer registry duly recorded their cases, leading to the high incidence rates.

In search of the cause of the mythical cluster, women demanded action; in 1995, Marin Breast Cancer Watch was born. Later renamed Zero Breast Cancer, the group united diagnosed women with political activists and scientists seeking to solve the mystery of the “Marin syndrome,” an unexplained breast cancer epidemic occurring amidst affluence.

Zero Breast Cancer provided comfort, support and education to cancer patients, organized scientist-activist conferences and called for prevention, not just detection. Community activists and patients, stepping into realms generally reserved for scientists, helped design and implement studies.

Zero Breast Cancer’s budget stabilized at around $500,000, with funds provided by individuals and institutions partnering with the nonprofit. These included Kaiser Permanente, Marin General Hospital, Marin Health and Human Services, the Public Health Institute and the Avon Foundation for Women.

The cornerstone of Zero Breast Cancer’s outreach program was the belief that white women in Marin had the highest breast cancer incidence rates in the world. The group maintains that line today.

Though its current director declined an interview for this investigation, Zero Breast Cancer’s director of 18 years, Janice Barlow, spoke with the Light before her recent retirement.

A nurse practitioner, Ms. Barlow said the cause of high incidence rates in white women in Marin is unknown. It could be caused by mammography-induced overdiagnosis, she said, or by a random fluctuation in data derived from a population too small to support a statistically robust study.

She does not discount the theory that highly educated women with disposable income in Marin—and other places with high incidence rates, such as Beverly Hills, Orange County and New York’s Westchester County—might be doing something that makes them more susceptible to breast cancer, such as overusing hormone replacement therapy or having children later in life.

“You can make up reasons, but nobody really knows,” she said.

Ms. Barlow was critical of the way in which risk is presented to the public. “In 1950, one in 20 women were thought to be at risk,” she said. “Now it is one in eight. People do not understand that is a lifetime risk. It does not mean that one out of eight people will get breast cancer. But it is put out there willy-nilly, in ads and letters requesting funds, as a way to raise awareness.” (See part two of this series for an explanation of breast cancer risk.)

As grassroots organizations mature, they shop for funding; sometimes they are even approached by funders.

“Avon asked us if it could give us money,” Ms. Barlow said. “The board had a huge debate about it, because of the chemicals in cosmetics. In the end, we decided that, well, we all wear makeup, and this can be a teachable moment for Avon.”

She added, “Avon was clear that it would not dictate what we could and could not do in exchange for the donations. So we became a beneficiary, along with San Francisco General Hospital, breast cancer clinics in Oakland and Mendocino, and Marin’s department of health.”

Described by critics as a “pink washer,” the Avon Foundation donates millions of dollars a year toward breast cancer research and mammography screening campaigns. Since 2007, it has donated $925,000 to Zero Breast Cancer—twice the group’s annual budget.

In her book “Pink Ribbons, Inc.” Samantha King investigates the self-interest governing the $400 million Avon has invested in research and screening campaigns. She describes how Avon uses donations from the public to promote its own brand management, or what she calls “cause-related marketing that helps reproduce associations between women and shopping, and of a more general tendency to deploy consumption as a major avenue of political participation.”

Ms. King observes that Avon and the Susan G. Koman foundation promote the “faulty assumption that breast cancer is a disease of white, middle-class women [despite the fact that] economically disadvantaged women are more likely to be diagnosed with late stage breast cancer and to have higher mortality rates.”

“As long as the breast cancer agenda is dominated by multinational corporations and their nonprofit partners, there is little hope that the barriers and burdens encountered by poor women will penetrate the preppy consciousness or elicit the kind of policy responses that actually make a difference to them,” she writes.

The Light asked Ms. Barlow why most breast cancer research in Marin focuses on white women, even though the disease kills more black and Latina women. She said it is a matter of incidence rates leading the way. But she also said it is hard to get black women to participate in clinical trials because of a mistrust around medical research.

“And they may have a more aggressive biology,” she said. “The Avon Breast Cancer Center in San Francisco reports African American women presenting with weeping lesions that are hard to imagine in this day and age.”

The reason for the late-stage lesions, of course, is that women without insurance often are not diagnosed until their cancer has metastasized.

Zero Breast Cancer has partnered with Marin County’s health department and the Avon Foundation to study causation in white women. It has also hooked up with two Bay Area nonprofit activist groups, Breast Cancer Action and the Breast Cancer Fund.

These groups lobby for laws aimed at restricting personal-care product companies from using hormone-disrupting plastics and carcinogenic chemicals banned in the European Union.

In an interview with the Light, Sharima Rasanayagam, the Breast Cancer Fund’s scientific director, said white women are more at risk of breast cancer, despite their mortality rate being vastly lower than that of women of color.

Dr. Rasanayagam claimed that black women get just as many mammograms as white women. (Most studies on that issue report they get less.) She was not aware of the serious problems with the quality of the state cancer registry’s incidence data—problems that have been identified in scientific literature and in the registry’s internal reporting, though the latter is only accessible through a public records request.

For her part, Dr. Rasanayagam was critical of the lack of research into suspected carcinogens such as those that abound in cosmetics and in the workplace. “In a larger sense, we are performing an uncontrolled, immeasurable experiment on humans right now by not taking a precautionary stance on the possible carcinogens we inject into our environment,” she said.

The work of the Breast Cancer Fund and Breast Cancer Action helped inspire Congress to pass the 2008 Breast Cancer and Environmental Research Act, which produced a massive study of the environmental causes of breast cancer.

The report, titled “Prioritizing Prevention,” brought together experts from the governmental, academic and activist sectors and laid out the risks associated with plastics, hormone disrupters and industrial and household chemicals.

With nearly 100,000 untested chemical products in use around the world, it would be extraordinarily expensive to test each one. According to activists, the best way to prioritize prevention is to deploy the precautionary principle: put the burden of proof of no-harm on the chemical, cosmetics and energy industry.

Make industry bear the cost of proving that products are safe before setting them loose in our increasingly toxic environment.

But advocacy that runs against the interests of corporations with a stake in preserving the status quo costs money—lots of it.

The Breast Cancer Fund has raised $14 million since 2010, monies spent mostly on staff, office space in downtown San Francisco and more fundraising. The Breast Cancer Fund does not disclose its donor list. Breast Cancer Action declined a request to release the names of donors who request anonymity; Zero Breast Cancer publishes its list of donors, which includes many individuals, local businesses and corporations such as Chevron, BioMarin Pharmaceuticals, Merrill Lynch Wealth Management and the Marin Independent Journal.

For Sharon Batt, a professor of bioethics in Halifax, Nova Scotia, and a leading expert on the politics of breast cancer, the radical edge necessary for grassroots activism is dulled as groups become dependent on funding from corporations selling carcinogenic products or cancer treatments.

Boards of directors became dominated by “women from the corporate world whose values differed from those of the group’s founders and from the women who volunteered at the community level,” she writes.

In a recent academic paper titled “A Community Fractured,” Dr. Batt quotes a disgruntled activist: “The pharmaceuticals were always knocking at the door but the door is being answered now by people who do not see anything wrong with that.”

She says activist groups that most successfully resist corporate seduction are those “promoting the precautionary principle and non-pharmaceutical disease prevention [pushing] to have toxic products removed from cosmetics and personal care products.”

San Francisco Bay Area activists are a part of this brave new movement, but with Avon and its pink beribboned partners knocking at the door, seduction is always a threat.

 

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In 1999, researchers from Zero Breast Cancer, the University of California, San Francisco and the Cancer Prevention Institute surveyed 729 mostly white women living in Marin (eight were non-white). Half had been diagnosed with breast cancer. The survey found that the women with breast cancer were slightly more likely to have been raised in an organized religion, and that Protestants got a smidge more breast cancer than Catholics. And while the vast majority of the women interviewed drank alcohol normally, 15 women with breast cancer drank three or more drinks a day, as opposed to six cancer-free women.

Out of this survey—and others equally lacking in statistical rigor—came the myth that Marin women who get breast cancer drink more alcohol than normal. Though there is no doubt that drinking alcohol, and the behaviors that accompany alcoholism, promote cancers of all kinds, moderate drinking is not a proven risk factor. Nor is Protestantism. Still, Marin Health and Human Services warns that “frequent alcohol consumption, and higher levels of education” are significant breast cancer risks. The California Health Interview Survey reports that middle-aged white women in Marin actually drink alcohol less frequently than the average Californian; they binge drink less, too.

There is no reason to believe that Marin is a hotbed of alcoholism.

 

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In September 2015, the Cancer Prevention Institute of California declared that the higher-than-normal burden of breast cancer afflicting white women in Marin has ended. “A whole lot of people are scratching their heads over this one,” Christina Clarke, an epidemiologist with the institute and the study’s lead author, told KQED.

In her report, Dr. Clarke said the invasive breast cancer incidence rate for white women living in Marin has dropped to 130 cases per 100,000 women. The high tide mark was 188 cases in 2001. The study offered no explanation of the decline, or the previously high rates.

It also compared apples to apples—high Marin rates to low Marin rates. In the past, Cancer Prevention Institute scientists wrote numerous papers claiming Marin women are in danger because the county’s incidence rate was higher than the California average—comparing apples to oranges, the only way to discern if a population is more at risk of a disease.

The California Cancer Registry reports that the average breast cancer incidence rate for white women in Marin from 1988 to 2012 was 158 cases per 100,000. The comparable average rate for all white women in California was 144 cases. And even though the Marin rates are declining, they are declining in parallel with a decline in the statewide average—and they are still higher. But since women in Marin still get significantly more mammograms than the statewide average, it is no surprise the Marin incidence rates remain higher.

The simplest explanation for the general decline is what is known as screening saturation. When mammographic screening is first introduced to a population, the number of diagnoses explodes for a decade or more. As existing pools of cancers are identified by screening—or “saturating” a population—the incidence rate begins to decline.

Dr. Clarke did not respond to queries about why her new study did not consider the effects of screening saturation. 

 

Clarification: The story was amended on Dec. 30 to clarify that Breast Cancer Action does publish a donor list in its annual report, but the group would not reveal the names of the 35 donors in its latest report who are listed as “anonymous."

 

Read part one here: http://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media...

Read part two here: http://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media...

Read part three here: http://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media...

Read part four here: http://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media...

Read part five here: http://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media...

Read part six here: http://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media...

Read part seven here: http://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media...

Read part nine here: http://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media...

Read part ten here: http://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media...

Read part eleven here: http://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media...