Barbara Brenner (1951-2013)
In Honor and Memory of Barbara Brenner
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. She died from complications of ALS (amyotrophic lateral sclerosis, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, leading to paralysis and death) on May 10, 2013 at the age of 61 at her home in San Francisco. 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 reminded us that sometimes it takes ruffling a few feathers to dislodge complacency. We honor her, and thank her for a lifetime of activism. Read more »
Celebrity Breasts and Corporate Gene Patents
Angelina Jolie’s op-ed in The New York Times was big news yesterday. She 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. But this is a bigger, more sinister story than one of a celebrity’s personal medical decision. Jolie insists that all high risk need access to “gene testing and lifesaving preventive treatment 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. And 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 those who have already been diagnosed. 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 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.
Breast Cancer Consortium founder, Gayle Sulik PhD, is interviewed in 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.” Read the article »
Breast Cancer Action rally at the Supreme Court steps – April 15, 2013 – to protest gene patents
Patients, Patents, and Profits in a Genomic Age (Published on Psychology Today on April 23, 2013)
While it is possible—maybe even probable—that every person will one day be genomically sequenced, there are limitations to how useful the information will be, and for whom? The Supreme Court considers the legality of patenting two genes — the so-called “breast cancer genes.” What will patenting these genes mean for patients, doctors, and the future of scientific research? Read more »
News & Views: Human Gene Patents and the Supreme Court
The U.S. Patent and Trademark Office has granted patents on at least 4,000 human genes to companies, universities and others that have discovered and decoded them. Patents now cover some 40 percent of the human genome, according to a scientific study led by Christopher Mason of Weill Cornell Medical College. But if foes of gene patents have their way, that percentage could be rolled back to zero. On April 15, 2013 the U.S. Supreme Court heard oral arguments in a case that calls into question whether human DNA can be claimed as intellectual property, and remain off limits to everyone without the permission of the patent holder. Check out BCC’s growing collection of News & Views »
“Topsail” – A New Video From Angelo Merendino, My Wife’s Fight with Breast Cancer
The summer before Jennifer died we spent a week at the ocean with her family. At this point Jen had been using a walker for a few months because the cancer had spread to her hip and she was having difficultly walking. Jen’s legs were getting weaker and she wasn’t sure that she would be able to swim in the ocean, which she loved to do. Read More »
The Making of a Peaceful Death (published in Issue 13 of TRIVIA: Voices of Feminism)
“What a peaceful death.” This is what the head nurse in the isolation unit remarked upon entering my father’s hospital room shortly after he died. The room was quiet, to be sure, but it had not been a peaceful departure. I know this for a fact. I was there. Still, throughout the early morning, as medical personnel and family came and went, and what was left of the figure called “father” grew ever more rigid, the silence of the space was read as a sign of the kind of death that must have taken place within it. The machines had stopped administering fluids; the monitors that recorded and gave voice to a stream of ever-more erratic vital signs had been turned off; the ever-more labored breathing of a body in distress had finally stopped. Life had departed, and to the relief of those who came to witness the space of its last presence, it had done so quietly. Read more »
Book Review — From Pink to Green: Disease Prevention and the Environmental Breast Cancer Movement
From Pink to Green by Barbara Ley explores breast cancer within the larger context of women’s health at the nexus of environmental and health social movements in the United States. Chronicling the environmental breast cancer movement from its beginnings, Ley explains how different advocacy organizations (from Breast Cancer Action and the Breast Cancer Fund to Susan G. Komen for the Cure) strategically tap into public and scientific discourse to shape how society deals with disease prevention and impact the public health agenda. From Pink to Green book offers deep insight for health social movements internationally as the body of evidence linking environmental factors to breast cancer increase, and the pink ribbon culture and industry continue to seek global traction. Read more »
Book Review — The Paradox of Hope
This book is not about breast cancer. But it may be of interest to those who are exploring the discourse of hope that dominates biomedicine and the broader cultural landscape oriented to survivorship. The Paradox of Hope by Cheryl Mattingly intimately explores the experiences of African American families who are caring for children with a variety of severe and chronic health problems and disabilities. Bearing witness to their crises as they navigate the medical system within the context of the multicultural urban hospital, Mattingly analyzes hope not only as an existential problem, but as a culturally and structurally situated practice that involves deep contemplation about what it means to have a good life and be a good person in the wake of suffering. Read more »
Thought Provoking Questions Raised in Breast Cancer Debate
The NGender Seminar Series at the University of Sussex (U.K.) teamed up with Breast Cancer Consortium members Dr. Ana Porroche-Escudero (University of Sussex) and Dr. Grazia de Michele to co-host a special session on Breast Cancer Awareness to celebrate International Women’s Day. The event involved the screening of the documentary Pink Ribbons, Inc. followed by questions and answers between the public and an expert panel. The NGender series wrote a follow-up about the event that summarized key issues discussed. Read more »
FILM REVIEW — Pink Ribbons, Inc.
Pink Ribbons, Inc. – both the book by Samantha King and the 98-minute documentary of the same name by Léa Pool - helped to open many people’s eyes to breast cancer as the “poster child” for cause related marketing, “girlie” culture, and exploitation of a good cause by corporations and charities alike. On November 13th, 2012 The Alliance for Cancer Prevention in association with Tipping Point Film Fund hosted a screening of the film in London, UK. The lively discussion that followed ran the gamut from confusion to outrage to a sense of relief that others shared their concerns about the seemingly endless need to fundraise for breast cancer while pink ribbon industries profit, incidence rates rise, and ”cure” remains an illusion. Read more »
An Interview with Samantha King, Author of Pink Ribbons, Inc.
Samantha King is an associate professor and graduate coordinator and associate director of the School of Kinesiology and Health Studies at Queen’s University, Kingston, Ontario. Her research focuses on breast cancer, corporate philanthropy, neoliberalism and the politics of health, sport and the body. King’s book, “Pink Ribbons, Inc., Breast Cancer and the Politics of Philanthropy” was published in 2006 by the University of Minnesota Press. The Canadian documentary, “Pink Ribbons Inc.,” is based on her book. In this BCC interview, King shares her perspectives on the state of breast cancer advocacy today. Read more »
Rights or Rhetoric? Breast reconstruction and the yet-to-be-tapped market of breast cancer survivors (Published on Psychology Today, March 31st, 2013.)
Knowing one’s rights as a patient is important. But as breast cancer culture came to focus on the upbeat, life-changing aspects of survivorship, it opened a new consumer market that uses the rhetoric of empowerment and awareness to commercialize almost every aspect of the disease. Read more »
BCC member Annette M. Gatison
I was diagnosed with two varieties of aggressive breast cancer, one in 2004 and another in 2009. Both required lumpectomy, chemotherapy, and radiation. In 2012 I had a radical mastectomy with reconstruction, which I hope will be my last surgery. But ever since those first words were uttered, “you have breast cancer,” there were things I needed to know that went beyond disease specific medical facts and statistics. My mind was reeling with thoughts of, “How can I handle this? What am I supposed to say? What am I supposed to do?” Uniting my professional work in health communications with my personal interest in breast cancer, I started The Pink and the Black project to explore systematically the lived experiences of Black women in relation to the cultural norms that would affect us most when dealing with this disease. Read more »
Ask any survivor about side-effects or working with an oncologist and you’ll receive a notebook’s worth of helpful information. But ask them about their relationship and you’re apt to hear variations on this theme, “He never blinked,” or “He really showed me how strong a man he truly is.” In other words, you’re not apt to hear what it’s truly like for some women. I was asked by a woman whom I admire to publish her anonymous essay about the impact cancer has had on her marriage. Read more »
Lance Armstrong, Susan Komen, and Me
A well-meaning person asks: “So, have you found life to be more meaningful now that you’re a survivor?“
I’ve been asked variations of this question ever since I finished treatment for breast cancer, and my answer has always been some version of the word NO, sometimes with colorful verbiage added to emphasize my indignation. But most people have no idea how much pressure there is to be inspiring after a cancer diagnosis. What does all this have to do with two of the most famous cancer patients of our day, Lance Armstrong and Susan Komen?
Every Silver Lining Has a Cloud (Published on Psychology Today on February 18th, 2013. For Michael.)
Much of my life revolves around cancer, both professionally and personally. My ongoing research of breast cancer culture and industry started over a decade ago and is still my everyday work. Many of my colleagues over the years and some of my closest friends and family members have dealt with cancer diagnoses, treatments, and the lingering effects of the disease and/or the medical interventions that were intended to slow its progression. What I’ve come to know about cancer is that it is a human evolutionary condition with unique biological underpinnings. But cancer is also an epidemic rooted in a society and culture that too often fails to recognize it for what it is, and what it is not. Read more »
The Breast Cancer Consortium's