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Chicago filmmaker and BRCA-positive woman celebrates liberation of her genes

Before last week, Myriad Genetics owned a patent on BRCA1 and BRCA2, known as the breast cancer genes.

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Chicago filmmaker and BRCA-positive woman celebrates liberation of her genes

Chicago filmmaker Joanna Rudnick prepares for an MRI. She tested positive for the BRCA1 mutation at 27 and decided to document decisions made thereafter in the film, ‘In the Family.’

BRCA Kartemquin Films/Joanna Rudnick

Joanna Rudnik’s mother was in her early 40s when she was diagnosed with ovarian cancer. Fearing a similar fate, the Chicago filmmaker decided to document her family’s history—and her own predisposition—in the 2008 film, In the Family.

She was single and just 27 years old when she tested positive for a mutation of the so-called breast cancer gene. But Rudnick desperately wanted children. She wasn’t ready to lose her ovaries to lower her risk of cancer.

She then had to decide between surveillance and surgery.

But at least she had a choice.

Not many women get that choice. Because not many women have access to the information she had; to know that they are possibly living with a ticking time bomb inside of them.

Those who test positive for BRCA mutations have up to an 85 to 90 percent lifetime chance of developing breast cancer. And up to a 50 to 60 percent life chance of developing ovarian cancer.

Dr. Olufunmilayo Olopade directs the Cancer Risk Clinic at the University of Chicago. She said many family members live under a cloud of fear.

Olopade’s been working for more than nearly two decades to open up genetic testing to all women.

“I spent my time as a cancer geneticist and expert in cancer-risk assessment actually calling insurance companies to advocate that women would benefit from the test and they should cover it. Sometimes when it’s denied, then the women can’t afford it, then they just don’t take the test,” Olopade explained.

See, many uninsured or underinsured women couldn’t afford the test. And really, most third-party payers didn’t want to cover the BRCAnalysis test. Because it generally cost over $3,000.

The reason? There’s just one test. A Salt Lake City-based biotech company called Myriad Genetics had a monopoly. They obtained patents on the two genes back in the 1990s, eliminating any chance of market competition.

Near the end of filming, Rudnik went to Myriad’s offices to confront them. She met with the founder and Chief Scientific Officer Mark Skolnick. He said the bottom line is that women were getting tested—in fact, he claimed she would not have been tested were it not for Myriad. And that doctors were “not prepared to do this.” He claimed that Myriad has addressed every problem that came up and solved it because they had a commercial interest.

The Supreme Court ruled that Myriad’s interests did not give them the right to patent parts of naturally-occurring genes. The unanimous decision came at an especially significant time for Rudnick.

Thursday was her 39th birthday.

In December, Rudnick was diagnosed with breast cancer—just a few months after giving birth to her second daughter. She just finished chemo and recently underwent a bilateral mastectomy and an oophorectomy.

“I just want better choices for my daughters—because I don’t want my daughters to go through what I went through and I want them to have better options” Rudnick said.

Soon after the Supreme Court delivered its decision, several labs announced plans to offer genetic testing. One lab, DNATraits, said it planned to offer the BRCA test in the U.S. for $995—that’s less than a third of the current price.

Rudnick called the court’s decision an absolute victory. But she believes it needs to be taken a step further. Now that women’s genes have been reclaimed, she says it’s time to collect the data Myriad compiled—so that better, cheaper tests and treatments can be developed.

In Honor of the Supreme Court’s decision, PBS has posted Rudnick’s film, In the Family, on its website. It can be viewed online, free of charge.

Katie O’Brien is a WBEZ reporter and producer. Follow her @katieobez.

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