Brought out into the open

May 21, 2013

The discussion about breast cancer and its causes--and the health care industry's failures--needs to be brought out of the shadows, writes Leela Yellesetty.

ANGELINA JOLIE'S recent announcement, via an op-ed article in the New York Times, that she underwent a preventative double mastectomy has received no shortage of commentary. Unfortunately, some, including on the left, found this an appropriate opportunity to make derisive sexist jokes at her expense.

Most people, however, applauded Jolie's bravery in making public what must have been an agonizing decision. For the millions of women and their families, my own included, who have dealt with breast cancer and mastectomy, Jolie helped to bring the experience out in the open and challenged the notion that losing your breasts somehow makes you less of a woman.

Jolie's piece also created an opportunity for a much-needed public discussion about the tragic lack of access to life-saving medical testing and treatment for too many. The test for BRCA1 and BRCA2 gene mutations--the presence of which have been shown to greatly increase the risk of breast cancer--costs upwards of $3,000.

What Jolie did not mention was why it costs so much. The company that administers the tests, Myriad Genetics, holds a patent on BRCA1/BRCA2, which gives them exclusive rights to conduct the test, even though other institutions are able to offer superior tests at a fraction of the price. In a grotesque illustration of upside-down priorities, Myriad Genetics' share price rose 4 percent after Angelina Jolie announced her mastectomy surgery.

Angelina Jolie
Angelina Jolie (Alex Villarreal)

As Ellen Matloff, director of genetic counseling at the Yale Cancer Center and a plaintiff in a lawsuit against Myriad Genetics, put it: "You shouldn't be able to patent a gene...This is patenting genes that we're all born with. The technology for testing those genes, which is sequencing, was already available."

Matloff has been joined by a coalition of women's health groups, patients, researchers, genetic counselors and scientific organizations representing more than 150,000 geneticists, pathologists and laboratory professionals in challenging Myriad Genetics and the legality of gene patents in general.

The case is currently before the U.S. Supreme Court, and a decision is expected this summer. While it may not have been her intention, Jolie's New York Times article came out at a perfect time to raise awareness about this lawsuit and mobilize popular pressure on the Supreme Court to rule on the side of public health, not corporate profit.

THE ISSUE of genetic testing is far from the only example of how the quest for profit severely undermines the fight against breast cancer.

While certainly these tests and treatment options should be available to those who need it, regardless of income, only 1 percent of women are thought to possess BRCA1 or BRCA2. For most women, genetic testing and preventative mastectomy--a surgery which carries its own significant risks--is not a likely course of action.

As activists in groups like Breast Cancer Action (BCA) have argued for years, with all the hype around genetic testing, too little research has focused on the far bigger environmental factors contributing to skyrocketing cancer rates. As BCA states on its website:

A growing body of evidence from experimental, body burden and ecological research indicates that there is a connection between environmental factors and breast cancer. There are over 85,000 synthetic chemicals on the market today, from preservatives in our lipstick to flame retardants in our sofas, from plasticizers in our water bottles to pesticides on our fruits and vegetables.

The U.S. government has no adequate chemical regulation policy, which allows companies to manufacture and use chemicals without ever establishing their safety in humans. As the use of chemicals has risen in the U.S. and other industrialized countries, so have rates of breast and other cancers.

One reason why there isn't more research or action on environmental factors is that there are powerful interests whose profits are at stake. As the excellent book and documentary Pink Ribbons, Inc., points out, in many cases, the same companies that donate and sell promotional pink products for the "cause" also produce products that contain known carcinogens.

Because of the lobbying of the powerful tobacco industry, it took decades to establish the connection between cigarette smoke and cancer. Once the connection was recognized, thousands of lives have been saved. Yet today, smoking, like genes or diet, can be chalked up to an individual risk factor.

Much more difficult to take on are the societal risk factors--of living in a world where the pursuit of profit consistently trumps concerns about public health. Only through collective action can we hope to reverse these sick priorities.

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