There were a couple of things that got cut from my New York Times Magazine piece on breast cancer that I wish I could've squeezed in. One is kind of wonky, which is why it was dropped, but super important. It's about data collection, based on a discussion I had with Dr. Peter G. Bach at Sloan-Kettering:
It surprised me to learn how little cancer data the U.S. collects, though it is vital to improving treatment. We know how many cases of cancer there are and the stage of diagnosis, but unlike Scandinavian countries, we don’t keep track of which therapies are used or what happens to patients over the long-term.
I could write a whole piece on publicly accessible, non-proprietary data collection and why we need to do it. But I just wanted to at least put it out there. Breast Cancer Action talks a lot about this one, and they are right. BCA is also leading the charge against the pernicious practice of gene patenting, which was just argued in the Supreme Court. Gayle Sulik discusses this one beautifully in a recent blog post on Psychology Today's site
The other thing that got cut was a bit of history on the divergence in the strands of the breast cancer movement. Again, I only had so much space and a lot to cover, but I think useful in thinking about one's choices when considering supporting various groups. Here's an excerpt (which never even got to the point of being fact-checked by the Times--it was really a draft):
It is hard to remember now, but until the early 1970s breast cancer was the Voldemort of diseases, its name never spoken aloud, omitted from a woman’s obituary. If you found a lump, you obediently submitted to the surgeon’s table: maybe you would wake up with a small incision from a biopsy that turned out to be benign. Or you would find yourself mutilated without your knowledge by a Halsted radical mastectomy, the standard treatment of the day, in which the entire breast, chest muscles and lymphatic tissue were removed. Either way, you were expected to keep your experience, and feelings about it, to yourself: to pull up your socks—or shove them in your bra—consider yourself lucky to be alive and get on with it.
That began changing in 1973, when Shirley Temple Black, the former child star, went public with her breast cancer in McCall’s magazine. The following fall, First Lady Betty Ford talked publicly about her diagnosis (as did Second Lady Happy Rockefeller, who was diagnosed two weeks later). By 1976, Betty Rollin’s memoir of her struggle with the disease, First, You Cry, became an international bestseller (and later a TV movie starring Mary Tyler Moore). And with that, a stigma was shattered.
Temple, Ford and the rest made telling one’s personal cancer story socially acceptable, even, in their defiance of shame, vaguely political. However, they didn’t question medical or scientific authority. That role fell to the nascent feminist health movement, and, specifically, a journalist named Rose Kushner. Kushner was diagnosed the same year as Betty Ford; through mutual friends, begged the First Lady to resist the paternalistic, one-step procedure for biopsy and mastectomy. Ford refused, saying, “the President has made his decision.”
Kushner spent the rest of her life—which would turn out to be sixteen years—challenging the medical establishment. It was Kushner who, undeterred when she was booed off the stage during a meeting of the Society of Surgical Oncology, fought, ultimately successfully, to separate a biopsy from cancer surgery; it was Kushner who fought to replace the radical Halsted mastectomy with one that was less disfiguring yet equally effective. And it was Kushner who started the first breast cancer information hotline that was run by women and for women.
There are now hundreds of breast cancer advocacy organizations and those two early strands sometimes overlap, but, as Gayle Sulik, author of Pink Ribbon Blues, has pointed out, the fundamental philosophical division between those who challenge the medical status quo and those who promote it persists. It can be seen in debates over how (and from whom) funds should be raised, how that money is dispersed, and what, precisely, “awareness” should encompass. Heirs to Kushner’s oppositional stance tend to reject the pink ribbon. They push for lay-person involvement in grant-making decisions. They question the efficacy of both treatment and diagnostics. They see potential conflicts of interest in partnering with corporations or Big Pharma. The most well-known include the National Breast Cancer Coalition, which since 1992 has lobbied Congress for $2.8 billion in funds for the federal Breast Cancer Research Program overseen by the Department of Defense; Breast Cancer Action, an industry watchdog group best known for coining the term “pinkwashing”; and the Breast Cancer Fund, which focuses on potential environmental links to the disease.
Komen, meanwhile, is heir to the Betty Ford model--they speak out, yes, but they don't truly challenge. They embrace private sector solutions, partnerships with corporations and organizations, including, as I say in the piece, those that harm public health: Chevron. Frackers. I care about breast cancer, passionately, but not at the expense of larger issues of public health. I am a fan of Breast Cancer Action's Think Before You Pink campaign, which coined (I think) the word "pinkwashing."
Ultimately, I think the pink ribbon with its assurances of hope and progress lull us into thinking enough is being done. It lulls us into thinking we can keep ourselves safe. It silences us in the name of voice. Meanwhile, women die. Meanwhile, women are over-treated, destroying their lives and well-being. Women with DCIS, rather than being celebrated as triumphs of early detection, should be FURIOUS that they will never know if their treatment was necessary or not. Rather than thanking pink ribbon culture, they should be protesting its complacency and myth-mongering, bringing their pressure to bear on making change so their sisters, mothers, nieces, daughters do not have to go through the uncertainty that they did.
I am sobered and inspired by Kusher's example. She, too, is a journalist, diagnosed young with cancer. She stood up to the status quo, stood up to ridicule, refused to yield to "good enough." I don't know why she has been virtually lost to history--I had never heard of her until I started reporting this story. Maybe there is more there than I know. But it seems to me that it's time to bring her back.
I don't stand with pink--but I do stand with Rose.
(photo from RKBAC.org)