(CNN) – Angelina Jolie, when writing about her preventive double mastectomy, did not discuss how much her surgeries cost, but she did mention that many women would . . . → Read More: Why Jolie’s cancer test costs so much]]> Editor’s note: Gayle Sulik is a medical sociologist, founder of theBreast Cancer Consortium and author of “Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health.” Follow her on Twitter: @pinkribbonblues

(CNN) – Angelina Jolie, when writing about her preventive double mastectomy, did not discuss how much her surgeries cost, but she did mention that many women would not be able to afford the $3,000 to $4,000 test that led her to make the decision. What she failed to say was why the test costs so much.

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After learning that she had inherited a mutation on one of the so-called breast cancer genes, actress Angelina Jolie decided to have a double mastectomy to reduce her risk of developing breast cancer. She also plans to have her . . . → Read More: Angelina Jolie and the One Percent]]> “Angelina Jolie and the One Percent” was originally published in Scientific American on May 20th, 2013.

After learning that she had inherited a mutation on one of the so-called breast cancer genes, actress Angelina Jolie decided to have a double mastectomy to reduce her risk of developing breast cancer. She also plans to have her ovaries removed to reduce her risk of ovarian cancer. It may sound like a drastic measure, but mutations on the breast cancer genes (BRCA1 and BRCA2) increase the overall risk of developing several cancers, including prostate, pancreatic, testicular, ovarian, and breast. On average, a woman with a BRCA1 mutation (the one Jolie has) has a 65 percent risk of developing breast cancer and a 39 percent risk of ovarian cancer by the age of 70. Jolie’s mother died of ovarian cancer at age 56, after ten years of living with the disease. Jolie explained her medical decision in an op-ed in The New York Times, saying that she decided to be proactive and to minimize the risk as much [she] could.

Since the Angelina Jolie story broke, there’s been a flurry of discussion about risks, medical interventions, access to medical care, body image, genetics and gene patents, reconstructive surgeries, and of course, health literacy and the role of celebrities in disseminating health information. These are useful conversations that I hope will continue. In the meantime, we should remember an important caveat about Angelina Jolie’s situation. Namely, that it doesn’t apply to most women.

Only about 1 in 600 women have variants on the breast cancer genes that are known to increase cancer risk. Women of Ashkenazi Jewish descent are more likely to have BRCA mutations, but overall less than one percent of the U.S. population of women has them — highly significant if you’re in that one percent, but not so for the vast majority who do not have strong family histories of inherited cancer.

In total, 5 to 10 percent of breast cancer cases, and 10 to 15 percent of ovarian cancer cases, involve mutations on the BRCA genes. Most do not. The interactions between genes and other aspects of the molecular environment are not clear enough to explain why most cases do not involve inherited mutations or why not everyone who inherits mutations in the BRCA genes develops cancer. Though family history of breast or ovarian cancer in a primary relative (such as a mother or sister) may increase a persons’ risk, even these families do not necessarily carry mutations on the BRCA genes. For those with strong family histories that have mutations of unknown significance (and there are many), decision-making about risk-reduction strategies is even more complicated and precarious.

And then there are people like Angelina Jolie — a woman with a mutation on one of the breast cancer genes who does indeed have a higher than average risk of developing breast or ovarian cancer over her lifetime. Since this is a lifetime risk, the younger the woman the lower the risk. At age 40, a woman’s risk of developing breast cancer by the time she turns 50 is 16 percent. Angelina Jolie is only 37.

There is no crystal ball to say when cancer will develop or in whom. Most cancer stems from multiple factors and the complicated ecosystems of our bodies and the external environments that affect them. There are reasonable ways, however, to evaluate one’s cancer risk. For ovarian cancer, known risk factors include age, reproductive factors, inherited genetic mutations, and a strong family history of breast, ovarian, or colon cancer. For breast cancer, risk factors include age, reproductive factors, inherited genetic mutations, postmenopausal obesity, hormone replacement therapy, alcohol consumption, and previous history of cancer of the endometrium, ovary, or colon. Unfortunately, risk factors are more relative than absolute. Seventy percent of those diagnosed with breast cancer have none of the known risk factors (besides being a woman).

As a result, many women overestimate their breast cancer risk, choose double mastectomies when cancer is only detected in one breast and there is no medical reason for doing so, and experience overdiagnosis, overtreatment, and an overabundance of self-surveillance. Genetic testing now blasts into the risk-focused cancer surveillance market with the joyful promise of proactive, empowered, life-saving decision-making — a promise they may help to deliver for people in the one percent. But with more than 1000 mutations already identified in the BRCA genes (and others yet to be discovered), most genetic profiles and treatment options are not so straightforward.

The Commercial Exploitation of Fear, Risk, and Body Image

With nearly 3 million women living with a breast cancer diagnosis in the United States, the advocacy and consumer bases are huge. Pink events in cities across America from pub-crawls to 5-kilometer races call attention to breast cancer, demand media attention, and saturate the culture. The empowerment/awareness context easily commercializes almost every aspect of the disease (i.e., awareness, risk, prevention, diagnosis, treatment, survivorship, research, support — all propped up with a seemingly endless array of pink products and medical interventions.) With 65 thousand new cases of noninvasive carcinoma in situ and more than 232 thousand new cases of invasive breast cancer this year, the breast cancer consumer base continues to grow.

Advertisement for Think Pink Cosmetic Surgery Giveaway for Breast Cancer Awareness

In addition to the use of emotional appeals, breast cancer advertisements increasingly use sex to sell a variety of pinked products. Some of the recent trends include the sexual objectification of women in the name of awareness itself. Femininity and stereotypical beauty ideals easily morph into advertisements for cosmetics and cosmetic surgeries aimed at both the diagnosed and would-be breast cancer supporters. The number of plastic surgery procedures generally increases about 5 percent each year. Ninety-one percent of all procedures are done on women, with breast augmentation topping the list since 2006. Now those in the beauty business can target women in breast cancer awareness campaigns.

The Think Pink Giveaways are not earmarked specifically for women with or without breast cancer. They merely paint a portrait of the ideal woman, perfected through the art of surgery. Incidentally, there was a 22 percent increase in breast reconstruction surgeries (from 79,000 to 96,000 procedures) between 2000 and 2011. Could the point be that, as one breast cancer blogger asks, women’s culturally acceptable body-loathing plays into these choices? One thing for certain is that both the advertisements and the educational materials tend to ignore the postoperative difficulties frequently accompanying these surgeries.

“Beyond The Shock” Online Guide to Understanding Breast Cancer by the National Breast Cancer Foundation, Inc.

A “Beyond the Shock” educational video from the National Breast Cancer Foundation fails to mention complications in its online guide to understanding breast cancer. In the chapter on reconstruction, there is no discussion of multiple surgeries, pain and weakness, scar tissue, nerve damage, risks of infection and implant rupture, and other complications. The video of a faceless caricature of a woman simply states that, “Following a mastectomy, you have options to help you become comfortable with the changes in your body. They are all options, with benefits to each approach. What is best for you and your body may not be what is best for another woman.”

Sugarcoating or ignoring the risks involved in major surgeries like mastectomy and reconstruction are an affront to women facing life-threatening disease and fear about their futures. Now with news about sexy Angelina Jolie’s “Boob-Job,” as it was referred to in Vibe Weekly, it will take a comprehensive re-education campaign to convey the many complexities such a decision entails, for those already diagnosed with cancer and for those who may have genetic predispositions. Unfortunately, too many cosmetic surgeons and cancer centers have been vigorously posting press releases and advertisements to highlight the positives, rather than offering a complete picture.

The Pink Lotus Breast Center where Angelina Jolie was treated showcased her “Brave Mastectomy Decision” on their website, with a fade-in image of celebrity Sheryl Crow, who, unlike Jolie, was diagnosed with and treated for breast cancer. Looking more like a spa than a cancer center Pink Lotus boasts patient choice, top surgeons, and holistic and complementary services (which may not be covered by insurance plans). After detailing the main stages of Jolie’ treatment in her blog, Dr. Kristi Funk writes, “Like Angelina, I urge women who feel they might have reason to be at risk for a BRCA gene mutation, perhaps because of a strong family history of cancer, to seek medical advice and to take control of their futures.” The uncertain language (e.g., perhaps, might), coupled with the decisiveness of taking control of one’s future is a common advertising formula in a medicalized society. Genetic testing companies similarly advertise the “life-saving, disease-preventing” opportunities of genetic testing even though the benefits for most would be uncertain at best.

The value of preventive measures for people at high risk notwithstanding, risk itself is a valuable commodity. The stock for Myriad Genetics — the company that presently owns the patents on the breast cancer genes and monopolizes the market on BRCA analysis (e.g., trademarked as BRACAnalysis) — went up 3 percent the day of the op-ed to a three-year high with twice the usual trading volume. Myriad markets both to consumers directly and to physicians and other health practitioners. According to Director of the Genetic Counseling Program at the Yale Cancer Center, Ellen Matloff, Myriad has been known to advertise in ways that “mislead [physicians] to think that 10 percent or more of their patients need the [BRACAnalysis] test, when that is not the case.” The Supreme Court will determine in June whether Myriad’s patents on the BRCA genes are indeed legal.

While there is no doubt that people with a strong family history of a cancer linked to the breast cancer genes should have reasonable and affordable access to diagnostic testing, genetic counselors only recommend the tests for those with high-risk profiles:

“Breast cancer before the age of 45, several family members with the disease on the same side of the family, breast cancer and ovarian or pancreatic cancer on the same side of the family, a family history of male breast cancer, or Jewish ancestry combined with even one case of breast or ovarian cancer in the family.”

Most women do not fit high-risk profiles because most cancers do not result from inherited gene mutations. The majority of genetic mutations are acquired over a person’s lifetime (i.e., somatic mutations). This is why the diagnostic tests are only recommended for people with specific risk profiles, and why rampant genetic testing would have little impact on the total cancer burden.

The Angelina Jolie case opens the door for thinking about what is at stake in the cancer wars especially for people at increased risk. Yet Angelina Jolie is in a unique and privileged position. She can get the best care, top surgeons, family help, and everything else that comes with power and wealth. For the rest of us, tough medical decisions come with other costs. But we all deserve quality information, evidence-based medicine, and access to comprehensive and coordinated health care that is free from conflicts of interest and the profit motives of commercial enterprises that are eager take advantage of our fears while selling us superficial “solutions” to our problems.

Images: Gage Skidmore, Jamie Barren, Beyond The Shock

Related:

• Courage versus Fear: Keeping Health Risks in Perspective When the Dramatic and Rare Goes Culturally Viral by Hilda Bastian.
• Why It Matters That Jolie Wrote About Her Medical Choice by Melanie Tannenbaum.
• May We All Have The Option of Double Mastectomy by Hannah Waters.

Actress Angelina Jolie leaves Lancaster House after attending the G8 Foreign Ministers’ conference on April 11, . . . → Read More: Celebrity Breasts and Corporate Gene Patents]]> Angelina Jolie’s op-ed in The New York Times was big news. Jolie shared her family history of cancer, her own genetic mutation, and her choice to have prophylactic surgery– agonizing decisions faced by other high risk women.

Actress Angelina Jolie leaves Lancaster House after attending the G8 Foreign Ministers’ conference on April 11, 2013 in London. (OLI SCARFF / GETTY IMAGES)

But this is a bigger, more sinister story than one of a celebrity’s personal medical decision. Jolie insists that all high risk women need access to “gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live” and notes that the $3,000+ test is out of reach for too many women. What she does not talk about is why the cost of the test is out of reach for many women.

Myriad Genetics holds patents on the human BRCA1 & 2 genes and therefore is the only company that offers the BRCA test. Other companies say they could provide a better test for a few hundred dollars but this monopoly gives Myriad control over research, testing, diagnostics and development of treatments related to the BRCA genes.

In 2009, Breast Cancer Action joined researchers, genetic counselors and cancer patients in a lawsuit to overturn Myriad Genetics’ patent on the so-called “breast cancer genes.” The case is currently before the U.S. Supreme Court and we expect a ruling this summer.

In describing her surgery, Jolie is focused on reassuring high risk women who might be considering a prophylactic mastectomy that the surgery is manageable and perhaps not as bad as they might fear. She discusses how small the scars are. She talks about “beautiful” results. She insists just “days after surgery you can be back to a normal life.”

In explaining why she is happy with her own choice, Jolie does not explore the many and varied side effects and risks of the surgery she chose. Surgery always comes with risks and disclosures. In addition, breast implants are considered “high risk” devices by the FDA. Four out of ten women who have had a mastectomy will need additional surgery within three years of getting implants.

The effects of surgical oopherectomy (removal of ovaries) on pre-menopausal women are even more serious. These women are thrown into immediate menopause and the subsequent effects which range from the discomfort of hot flashes to increased risk of cardiovascular disease, osteoporosis, and other negative health consequences.

None of this is to pass judgment on or criticize Jolie’s own medical decision but rather to highlight the importance of a balanced discussion, one that includes consideration of the full range of risks and side effects. Jolie shares her own story with the world. She does not—nor should she—provide balanced medical counsel. However happy Jolie feels with her decision, too many women struggle with what they feel are all around bad choices. The call for better options comes both from women at high risk of breast cancer and from women who have already been diagnosed with breast cancer.

The increased risk of breast and ovarian cancer associated with BRCA mutations cloaks an important observation. Not every woman with a mutation will develop cancer in the course of her life. As we grapple with a breast cancer epidemic in this country, we need more research into the mechanisms of breast cancer and true prevention. After 30 years of breast cancer awareness, we are in a perverse situation where the average woman vastly overestimates her individual risk of breast cancer. Most women with breast cancer do not have an inherited genetic mutation. For those who do, there is no question that access to the genetic test and accompanying genetic counseling, free of corporate influence, provides potentially life-saving information. Whether high risk or average risk, all women need access to quality information free of corporate influence and appropriate health care based on their individual choices.

Behind Jolie’s publicity grabbing personal story, is the fact that one corporation owns the BRCA1 & BRCA2 genes. I invite Jolie to join those working to outlaw human gene patents, to call for more research into mechanisms of breast cancer, to demand access to information and health care, and to ensure that every woman can make her own health decision after weighing risks and benefits according to her own individual values and priorities.

Originally published by the Breast Cancer Consortium.

As Breast Cancer Action’s executive director, Karuna Jaggar’s vision for health equity awards every woman affected by breast cancer the power and knowledge to make informed decisions that enable them to take control of their healthcare. This includes a woman’s right to access affordable treatment options, to create individualized treatment plans that reflect personal values and priorities, and to avoid involuntary exposure to environmental toxins. Recognizing that social injustices and environmental factors put each of us at risk of developing breast cancer, regardless of family medical history, Karuna insists that personal lifestyle choices will not protect us from breast cancer.

Barbara Brenner was 41 when she was first diagnosed with breast cancer, a diagnosis that led the lawyer and activist to join the board of Breast Cancer Action, a grassroots advocacy organization in San Francisco started by women with breast cancer. A year later, she became the organization’s first full-time executive director. . . . → Read More: In Honor and Memory of Barbara Brenner]]>

Barbara Brenner (1951-2013)

Barbara Brenner was 41 when she was first diagnosed with breast cancer, a diagnosis that led the lawyer and activist to join the board of Breast Cancer Action, a grassroots advocacy organization in San Francisco started by women with breast cancer. A year later, she became the organization’s first full-time executive director. Barbara retired in 2010 after being diagnosed with ALS (amyotrophic lateral sclerosis, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, leading to paralysis and death, commonly referred to as “Lou Gehrig’s Disease.”) Barbara spent the past two years coping with the illness and writing for social change. Barbara Brenner died from complications of ALS on May 10, 2013 at the age of 61 at her home in San Francisco.

I met Barbara Brenner in a book. In a collection of scholarly essays called Breast Cancer: Society Shapes an Epidemic, she wrote the final substantive chapter, which was about women creating a breast cancer movement. I had just begun my own investigation of breast cancer culture, industry, and advocacy. I re-read Barbara’s words many times. Today, as I gaze beyond the post-it notes, tabs, and highlights that cover the book, I see how insightful and prophetic her words were:

“Social change—both in the movement itself and in the scope and nature of the breast cancer epidemic—will come slowly. When that change does come, the result will be that all women with breast cancer will have clear choices for treatments that cure their disease without causing another one, and all people will live in a world where they are protected from the known causes of breast cancer. The road from here to there remains unmapped, but the breast cancer movement may yet pave the way.”

When I published Pink Ribbon Blues, ten years after I first read Barbara’s words, women still didn’t have clear and safe choices for treatment; nor were they protected from the known causes of the disease. Breast cancer had become more commercialized than ever. Mainstream advocacy was even more committed to pink ribbon community building, fundraising, and the myth of early detection as the fundamental savior for women. The medical establishment further invaded the nonprofit sector and patient advocacy efforts. Pink ribbon visibility supplanted real consciousness-raising. And the feel-good element of the breast cancer movement used its corporately funded megaphone to create a breast cancer brand with a pink ribbon logo.

Barbara was pissed off about this state of affairs. But she never gave up on the idea that things could be different. With Breast Cancer Action at her side, she pushed people to act, to demand, to expect more than what we’re getting in the so-called war on breast cancer. Her tenacity, insight, and pursuit of reason resonated with me, so much so that at the end of Pink Ribbon Blues I also wrote about the potential of a new road making a difference. “Taking a road less pink requires fundamental changes in the way we organize around breast cancer and in the questions we are willing to ask of ourselves, our families, our elected officials, our corporations, our medical system, our scientists, our media, and those who represent us in advocacy.” I wrote this knowing that some people were already out there, unrelenting in their pursuit of change. I wrote it knowing there were people like Barbara Brenner who refused to be silenced.

Barbara Brenner was anything but silent. She embodied the spirit of Audre Lorde, who believed that, “When I dare to be powerful, to use my strength in the service of my vision, then it becomes less important whether or not I am afraid.” Barbara Brenner was powerful, at times obstreperous. She never seemed to be afraid to call things as she saw them, and it didn’t seem to matter who got upset about it. Barbara Brenner reminded us that sometimes it takes ruffling a few feathers to dislodge complacency.

As I sit and think about Barbara Brenner and everything I learned from her, I feel a heavy weight around my heart. Who will push us to stretch our minds and abilities until we pave a new road in breast cancer? Who will keep us on the edge of our seats until people really are valued more than profits? Who will provoke us until we understand that the social, political, and economic structures that brought us to where we are in the breast cancer epidemic will surely keep us here unless and until we demand change? Most of all, who will remind us that if we are comfortable with the pink ribbon state of affairs, then we are part of the problem.

It’s up to us now.

In gratitude to Barbara Brenner,

Gayle Sulik

Peggy Orenstein’s April 25, 2013 article–the cover story for this Week’ s New York Times’ Magazine, offers an in-depth look at breast cancer in the United States. The 9-page essay–  called “Our Feel-Good War on Breast Cancer” — is well worth the read, highlighting key issues in breast cancer awareness campaigns, . . . → Read More: “Our Feel-Good War on Breast Cancer”]]>

Peggy Orenstein’s April 25, 2013 article–the cover story for this Week’ s New York Times’ Magazine, offers an in-depth look at breast cancer in the United States. The 9-page essay–  called “Our Feel-Good War on Breast Cancer” — is well worth the read, highlighting key issues in breast cancer awareness campaigns, research, advocacy, and the painful realities of her own diagnoses. Officially now a two-time breast cancer “survivor,” Orenstein thoughtfully, reflectively, and directly probes the ongoing tug-of-war surrounding one of the most visible and commercialized social causes of our time.

I am honored to have been interviewed for this story.

Excerpts as follows:

In “Pink Ribbon Blues,” Gayle Sulik, a sociologist and founder of the Breast Cancer Consortium, credits Komen (as well as the American Cancer Society and National Breast Cancer Awareness Month) with raising the profile of the disease, encouraging women to speak about their experience and transforming “victims” into “survivors.” Komen, she said, has also distributed more than $1 billion to research and support programs. At the same time, the function of pink-ribbon culture — and Komen in particular — has become less about eradication of breast cancer than self-perpetuation: maintaining the visibility of the disease and keeping the funds rolling in. “You have to look at the agenda for each program involved,” Sulik said. “If the goal is eradication of breast cancer, how close are we to that? Not very close at all. If the agenda is awareness, what is it making us aware of? That breast cancer exists? That it’s important? ‘Awareness’ has become narrowed until it just means ‘visibility.’ And that’s where the movement has failed. That’s where it’s lost its momentum to move further.”

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