Who Owns Our Genes?

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.

Cleaning out the Cobwebs

I must admit, I have been neglectful of late and it’s gotten a bit dusty around here. As it is wont to do, life took over. The cobwebs aren’t just virtual, though – they are metaphorical as well; it’s pretty dang dusty inside me head of late! So here’s a quick update of what’s been keeping me busy:

The Stolen Color From My Rainbow

I’ve been pondering this post for about nine months, since October, when our concerns with “pinkwashing” peak each year. That is when it first occurred to me that I resent giving up pink. Today’s release of the new film Pink Ribbons, Inc. prompted my return to the subject. (I already have my tickets for tonight’s showing at the Laemmle.)

I have never been a huge fan of pink. Too girly, maybe or too cheerful for my “take no prisoners” and follow no rules self. But that does not change the fact that pink should be mine to reject, not “theirs” to take away. The color has been usurped by the cause marketing world as a vehicle for selling products, most of which do nothing to impact breast cancer.

As the movie explains, the ribbon didn’t even start out as pink in the first place. It began in the early ‘90s as a peach ribbon, created by Charlotte Haley, whose grandmother, sister and daughter all had breast cancer. Ms. Haley used handmade ribbons to bring awareness to the lack of funds directed toward breast cancer prevention by NCI. She is rumored, ironically, to have rejected Estee Lauder when they approached her about co-opting the ribbon as a broader symbol of anything but her personal awareness campaign. Enter pink…

In the breast cancer world pink may be the most divisive thing of all! Some love it, some hate it, but no one seems to be quiet about it. The division doesn’t help us! We, the breast cancer community, must come together. We must give up the pink war. We must use the vast resources at our disposal to strategically focus on curing breast cancer. We need to prevent disease. We need better treatment. We need prevent metastasis. And we need to prevent people from dying. We don’t need pink.

A few weeks ago I came home with new pajamas. As I was putting them away husband noticed and said, “But they’re pink…” Yes, they were pink! Why shouldn’t they be? I want the beauty of my rainbow back, in all its colors!

National Breast Cancer Coalition

There are countless breast cancer “charities” out there…from beheamoth organziations of international scope, to local support centers active in our various communities. NBCC is of particiular note as a stand-out national advocacy organization supporting an agenda of finding a cure, and I proudly join them next month as we work to move that agenda forward! In addition to Joy’s wonderful overview of NBCC, there are some valuable & important links to related projects and efforts.

NATIONAL BREAST CANCER COALITION
–by Joy Simha, NBCC Executive Committee

At The National Breast Cancer Coalition every bit of business we do begins with a moment of silence (MOS) to remember an incredible breast cancer advocate who has died since our last gathering. The MOS grounds us and reminds us about why we are there. And every day as I sit down to my desk to write, I look at the faces of all the women I know who have died of breast cancer. I also, in some cases, look at the faces of their children, because I know that I want to end breast cancer because they are without their mothers.

Not Funding Mammograms for the Cure

In a thinly veiled move that defies explanation, Susan G Komen For the Cure has chosen to pull the plug on mammograms for low-income and/or underinsured women. What might their next step “for a Cure” be?

Slate on Komen     Jezebel on Komen

There IS Something You Can Do…

The outpouring of love and support, from both my in-person and online communities has been so profound and I simply don’t have words for how touched I have been. Many have asked if there’s anything they can do. For the moment, we need your thoughts and prayers as we all find our “new normal.” But there is one thing you could do for me….

I’ve blogged before about the importance of research and the need to fill clinical trials, and as many of you know I spent my summer working on my first scientific peer review panel for the Department of Defense. And there is one certainty…we cannot cure this disease without evidence-based scientific research. And we cannot complete research studies without subjects. So if you’d like to do something for me (which is really for all of us), please follow this link now to the Love/Avon Army of Women site and sign up. All women are eligible, irrespective of breast cancer history. In signing up you are committing to read periodic emails about breast cancer studies. (You won’t be eligible for most of them.) You are not committing to participate in anything! If you’re eligible you will get more information to help you decide if you’d like to participate. Some studies are involved, and others require you swab your cheek. Your information is only shared with researchers once you indicate interest. It’s always up to you, but you just might be a part of the cure!