For the last two weeks, I had recurring intermittent pain in my gut. At one point in my life, I might have popped some Tums and turned back to my work, but not now. This time, I ran off to see my doctor, seeking reassurance that I didn't have ovarian cancer. In November, I lost my fourth dear friend to the disease and I was still feeling heartbroken and vulnerable. I was all too aware that this could be my turn, the moment when a doctor's appointment turns from a simple exam into a huge health problem. What would I do then?
The truth is that health care for LGBT people is fraught with discrimination. Once we add a catastrophic illness into the mix, the stakes become higher and the systemic failures more glaring. If you have cancer, it's hard to have the time and energy to fight the system, along with the disease. Until now, there was no guidebook.
In a recent study conducted by the National LGBT Cancer Network, we found that if LGBT cancer survivors believed they had to choose between good medical treatment and social acceptance, many chose to hide their gender identity and sexual orientation. As a lesbian survivor told us,
I was never out during the whole process to anyone. I had no one... visit me for fear of my gayness being discovered and then the doctor "accidently" not removing all the cancer lesions. It would have been nice to have my partner with me because she understands lots of medical things and I have no clue about medicine at all. My family refused to come and told me they hoped I would die from the cancer.
On the other hand, those who felt safe bringing their whole authentic selves into treatment found it profoundly beneficial to their healing. As this survivor told us,
It was very comforting and supportive for me to have my relationship with my partner be so accepted by my healthcare team. It took some of the worry out of the equation and allowed me to let go and have those around me really care for me. It meant I knew I could trust the medical team to support me and my family through cancer.
With generous funding from the Palette Foundation, the National LGBT Cancer Network has organized our collective treatment experiences into a map of LGBT-welcoming cancer treatment facilities across the country. The state-by-state directory is on our website under the OUT & Surviving banner.
We supplemented stories that survivors sent us with a rigorous investigation of our own and included only those places that met our strict criteria. For inclusion, they needed to do more than meet the Joint Commission's requirement to have an LGBT nondiscrimination policy posted: we needed to also know that the staff had received cultural competence training, that their intake forms reflected the variety of relationships and gender identities within our community, that they had experience with this population and that they had a designated liaison to address the concerns of LGBT patients and families.
We contacted every one of the 67 NCI-designated Cancer Treatment Centers and ultimately only added 43 of them to our list. We partnered with the Gay and Lesbian Medical Association who loaned us their provider directory to cull from. Every facility that wasn't up to our standards was offered cultural competence training to help them better understand the needs and challenges of LGBT cancer survivors. They were also directed to HRC's Health Equality Index for more information.
The ultrasound showed me to have two healthy ovaries. I am safe. For now. But, I also have a directory in my virtual back pocket, should I ever be diagnosed with cancer. The directory is not perfect and it is not complete; it is a work in progress, requiring LGBT survivors and caregivers to keep alerting us to errors and additions. It takes all of us to make a difference in the lives of LGBT people with cancer and those at risk. Stay in touch and tell us about your experiences. Tell your friends about the directory.