Such was the case heard at the Supreme Court this morning. I was honored to be asked to speak by rally organizer Breast Cancer Action. My remarks are below.
Good morning and thank you for being here! My name is Lori and I have breast cancer.
· I am here today, to stand arm-in-arm with my BRCA sisters because we are all in this together.
· I am here today as a metastatic patient and because every day for the rest of my life, I will live with this disease. I need every viable avenue of research uncovered, because if I live long enough, each treatment will probably stop working for me.
· I am here today because we must stop trying to turn America PINK; and instead unite our focus on research, not ribbons.
· I am here today because 40% of the human genome is ALREADY patented, denying information about our bodies and preventing cures.
· I am here today because stumbling blocks on the path to a cure must, MUST be removed.
· I am here today because lives on are the line.
· I am here, perhaps most importantly, because I am the mother of a sweet, smart, wonderful 14-year old son who deserves to have his mother see him dressed for his first date, help him choose a corsage for prom, watch him graduate from college. He deserves to see my smiling through my tears on his wedding day. And breast cancer is slowly taking me away from him…
Today’s Supreme Court hearing will impact our ability to understand our cancer risk, as well as that of our mothers and sisters and daughters. It will determine our ability to make informed decisions based on reliable information. It will determine the path to new interventions.
Today’s hearing is about that, and about Myriad’s profits.
As it stands right now, not even my own doctor can examine my genes, and scientists can’t study them, so that Myriad can make money.
Because patents are about money – about the right of an individual or company to receive time-limited profit from their ideas and their efforts to bring them to the market place. Patents exist to spur expensive research and innovation. But when it comes to blocking access to our genes, patents do the opposite.
Gene patents block channels of research and restrict innovation. The BRCA gene patents exist at our expense so that Myriad can profit.
· Does Myriad care that their test is too expensive for so many of us? NO
· Does Myriad care that there are errors in their test – both false negatives AND false positives? NO
· Does Myraid care that there is no verification test? NO
· Does Myraid care that their test is outdated; that the science has passed them by? NO
Unlike most of the scientific community, where global sharing of pertinent understandings that can benefit the common good is prevalent, Myriad chooses to hide their BRCA discoveries, hoarding information that impacts our lives.
What else might be hidden in the gene code that Myriad controls?
· Information for others who have strong family histories of breast cancer and are testing BRCA negative?
· Additional help for us as we decide whether to amputate our breasts and remove our ovaries in hopes of saving our lives?
· Information about other diseases and disorders?
And…if Myriad controls our genes, perhaps they should be held accountable when these genes mutate and malfunction. But of course that won’t happen…
I grew up in the early days of the feminist classic Our Bodies, Ourselves. I was taught that my body was MINE, that •I• made decisions about it. But with the emerging prevalence of gene patenting that is no longer true.
You can’t patent Laws of Nature. You can’t patent the wind, though you can a turbine; you can’t patent the sun, only solar panels. Are not our bodies the result of Laws of Nature as well? If not, then why stop at genes? Next it will be a blood, our organs…
We know the idea is preposterous. And we know that today is that day things can change, that this error can be righted, that justice can prevail, that his wrong can be righted.
Thank you for your passion, for being here, for standing together with us.