Activism

Sue Friedman

Diagnosed at 33, Sue Friedman had already undergone treatment when she found out about the BRCA2 mutation that had given her a 9-in-10 chance of developing hereditary breast cancer.

Three years later, in 1999, Friedman founded FORCE: Facing Our Risk of Cancer Empowered, an organization advocating for awareness of hereditary breast and ovarian cancers. And they’ve had a pretty big year.

In April, the Supreme Court heard arguments about whether Myriad Genetics, Inc. had the right to patent the BRCA1 and BRCA2 genes. What seemed like an obscure matter was a life and death issue for many Ashkenazi women who, like Friedman, are far more likely to carry the mutation than the general population.

Friedman wrote an amicus brief to the court, expressing her concern at the implications of Myriad’s monopoly over the genes. Tests would be more expensive, and less accessible, she argued, because of the company’s control over research.

Then, in May, Angelina Jolie came out with a revelation in the opinion pages of the New York Times: After testing positive for a BRCA1 gene mutation, she had opted for a double mastectomy.

For activists like Friedman, 50, this was a long-awaited chance to bring attention to a health risk that she and others had been facing in silence and, mostly, alone.

Partly as a result of Friedman’s efforts, FORCE’s 15th anniversary will be a happy one: In June, the Supreme Court ruled that human DNA cannot be patented without being altered in some way, a victory for BRCA positive women.

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