Paula Ettlebrick died of ovarian cancer last week and a whole movement grieves her loss. Her beauty, passion, and intelligence do not come around very often. My close friend Adria died six years ago after a losing struggle with ovarian cancer and she was mourned by her lover, her son, an entire caseload of psychotherapy clients, and me. We played tennis together every Thursday at 1 p.m. for 15 years. Ruth, one of my best friends since college, died of ovarian cancer three years ago. I have not yet recovered.
I will skim over the story of Shirley — my friend of 30 years with two young children, a partner, and ovarian cancer — as well as the dozen women I love who are breast cancer survivors. Oh, yes, I have a friend with lung cancer, too.
This is an epidemic. Our leaders, our friends, our lovers are getting cancer at a disproportionate rate and no one seems to be up in arms about it. Yet.
There are no T-shirts, no slogans. We view each lesbian who gets diagnosed with cancer as a personal tragedy, not a national scourge. When we learn about Cynthia Nixon or Wanda Sykes getting breast cancer, we are upset, of course, but we think of them as unlucky individuals.
It is a plague, I tell you, and the cause is found not in differences between our bodies and those of our heterosexual sisters, but in the social conditions in which we live. We need to do something. Be loud. Angry. Big.
Only 5% to 10% of all cancers can be traced to heredity, like a broken BRCA gene. Most causes are unknown, but many are linked to behaviors that are more prevalent in the lesbian community. The stress and stigma of living as sexual minorities takes its toll on our bodies. More and more research supports the idea that experiencing prejudice leads directly to health problems. As a group, we also smoke more, drink more, and eat a less healthy diet — all of which increases our cancer risks.
Then, instead of being extra vigilant about cancer screenings, we avoid the health care system. A large Harris Interactive poll of primarily white, middle class and educated lesbians found that 75% of them, the more privileged subset of all lesbians, avoided or delayed health care. Imagine what the numbers would be for lesbians of color, those who are poor, less educated, gender non-conforming, undocumented.
In most of my life, 2 + 2 = 4. I count on that. Higher-cancer-risk plus lower-cancer-screening must equal both a higher incidence of the disease and cancer found at a more advanced stage. But because no cancer registries collect information about sexual orientation (or gender identity), we remain hidden in the data. So, I can’t prove we have more cancer. Yet.
Look around you right now. How many lesbians do you know with cancer? More than your heterosexual sister, I am sure.
And what are we doing about it? Helping out with childcare or transportation or food during a friend’s chemotherapy is not enough. After someone we love dies of cancer, mourning is essential but not enough.
When our gay brothers died of AIDS, we organized, we demanded, we shouted. It is time for us to do that for our lesbian sisters today. If Paula Ettlebrick’s work changed your life one tiny bit, do not just weep alone. Do not just write a condolence card. Write the card, but then stand up, be angry, demand that we not lose another lesbian, another lover, another movement leader to cancer.
The last time I spoke to Paula, about a month ago, she wanted to work with me to organize the first conference in this country addressing cancer in the LGBT community.
Here is my preliminary list of demands. Add yours in the comments section below.
1. Demand that all hospitals and all cancer registries collect information on sexual orientation and gender identity, so we can prove our rates are higher. Without this data, we will not get federal recognition and funding.
2. Demand that more research be funded on lesbian cancer risks. We need to know more and have studies with larger samples.
3. Demand that all health care facilities — including cancer screening and treatment services — make LGBT cultural competence training mandatory, making it safer for us to use these services in a timely way.
4. Demand that these services reserve budget money to reach out to our community, showing us it is safe for even gender-nonconforming lesbians and transgender guys to get respectfully screened for cervical cancer and breast cancer.
5. Demand that all oncologists learn about our sexuality so they can answer questions about our sexual practices post cancer treatment. Currently, they cannot.
6. Demand that all places that offer cancer support groups create one for LGBT survivors and caregivers, thereby improving the quality of life currently reported by lesbians and bisexual women after their cancer diagnosis.
7. Demand affordable health care for all, a system that does not require legal marriage to an employed partner to get coverage.
Until our demands are met — until it is safe and affordable to engage with the health care system — you may not want to go alone to the doctor. But, we must go. Go in pairs, go in packs.
If you love her, get her screened. Today.
Liz Margolies is the founder and executive director for the National LGBT Cancer Network.