Friday Feature – Joanna Rudnick
This is the first of a biweekly series that will feature our talented grantees’ projects and ideas. We’re excited to provide our grantees a space to share their thoughts with you, our readers, and we welcome all responses and discussion. Our first week’s grantee is Joanna Rudnick, filmmaker of In the Family, who writes about her experience with breast cancer and Myriad Genetics. Be sure to check out her clip at the bottom of this post.
When I heard that the ACLU was challenging the patents on BRCA1 and BRCA2, I was in between my bi-annual MRI monitoring for breast cancer and packing to attend the Facing Our Risk of Cancer Empowered (FORCE) conference in Orlando, which was celebrating 10-years of advocacy around issues affecting high-risk women.
During the 13 years that women have had blood drawn to determine whether they have an extremely high risk of developing hereditary breast and ovarian cancer, Myriad Genetics, a private company based in Salt Lake City, has been aggressively defending the patent they have on our genes.
Did they invent the genes? Of course not. Yet some loophole in the U.S. Patent System gave Myriad a monopoly on the “breast cancer genes.” Myriad is allowed to send cease and desist letters to Universities and labs across America, essentially cutting off all efforts to develop a better diagnostic test, and a cheaper test that would be more accessible.
I shared my story of testing positive for the BRCA1 mutation (Ashkenazi Jews, like me, who have a 1 in 40 chance of carrying the mutation) in the documentary In The Family, which was nationally broadcast on PBS’s P.O.V. series in October 2008. The focus of the film was the life-saving yet excruciating consequences of learning that I was living with an up to 87% lifetime risk of developing breast cancer, and an up to 60% lifetime chance of developing ovarian cancer.
During the filming process, I was lucky enough to get a second opinion—I was re-tested in Canada, outside of Myriad’s lab. The result was still unfortunate. I had the mutation, but I also had something most women and men who test for this mutation don’t have—the security of a second opinion. If women are removing their breasts and ovaries based on this information, is a second opinion too much to ask for?
Over the last 8 years, I have pleaded with doctors and scientists to tell me more about my odds of developing cancer. Their answers are always the same: One day, we will understand how other genes, so called “modifier” genes, increase or decrease your risk. Genes don’t act in isolation. How can we find out how BRCA works with other genes if Myriad’s patent limits this essential research?
And for women like Martha Haley who want to know if BRCA is the culprit in their breast cancer, should the over $3000 cost of the BRCAnalysis® test be a barrier to that information?
Martha, who appears in In the Family eventually gets testing through an Avon-funded program for under-insured women at John H. Stroger Jr. Hospital of Cook County (the hospital made famous by ER). Dr. Pam Ganschow, who gives Martha her test results, applied for the Avon program when she was running into barriers with Myriad’s special assistance program. She tested four women through Myriad’s program vs. over 100 through the Avon grant in the same amount of time.
Why is this test $3000? I went to Myriad’s headquarters in Salt Lake City, Utah, to find out. After an extensive tour of the lab, I sat down to interview the Founder and Chief Scientific Officer of Myriad, Dr. Mark Skolnick. The lab was beautiful and state of the art, but Skolnick’s answers surrounding the fixed pricing, ethics and detrimental consequences of gene patenting were unsatisfying and dubious (“people don’t complain about having patents for their Ipods”), leaving more questions than answers and leading to where we are now with the ACLU challenge.
Please visit the ACLU site to sign a message of support for the plaintiffs in their case against Myriad Genetics.