‘An Obligation to Make Things Better’: Coping With Cancer Disparities Among LGBTQ+ Communities

You say in your presentations that potential cancer disparities for LGBTQ+ people are often due to discrimination and stigma. What do you mean by that?

The majority of the LGBTQ+ population that has cancer is over age 55. Many of these people have lived experiences of stigma and discrimination. Some of that stems from participation in the military or being closeted earlier in life when it wasn’t accepted to be out of the closet in American society. In some parts of the country, there are still very real reasons for LGBTQ+ people to not feel safe being out in their day to day lives.

Many of these people lived through the HIV and AIDS epidemic where a serious health crisis facing gay and transgender members of the community was not acknowledged or addressed sufficiently by the health care community or by our government. The message that LGBTQ+ people received was that their health care and well-being were not important. Social messages such as these, and direct experiences of stigma and discrimination, become internalized, leading some to not feeling safe about showing up for medical care. For these reasons, LGBTQ+ people experience a tremendous amount of medical mistrust.

→ New Study Shows LGBTQ+ Adults Face More Discrimination in Health Care

Those and other stresses, like discrimination in housing and employment, can compound with cancer-related stresses to create more psychological distress when recovering from cancer. These complex stressors are particularly problematic for transgender and gender-nonconforming populations. We have anti-trans legislation on the books in states like Florida, Texas, and Alabama.

However, in my experience and research, once LGBTQ+ people come into care and treatment, and realize they have providers who are trained, respectful, and take care of them, then a lot of that medical mistrust evaporates, and people are able to focus on their recovery from cancer.

Are there gaps or obstacles to providing the best cancer care to LGBTQ+ communities in the U.S.?

The amount of training that doctors receive in medical school on providing optimal care for LGBTQ+ patients tends to be four hours or less. It’s not adequate. Providers need to understand specific gaps in their education with regard to care – like, who needs to be screened for what? How do we hold sensitive conversations with diverse patients? How can we best include the unique partners, caregivers, and families of LGBTQ+ patients in their cancer care. At the CU Cancer Center we work on training quite a bit.

Another gap is that we don’t have adequate data collection on sexual orientation and gender identity that’s nationally consistent, so it’s really challenging to conduct research on cancer health disparities across sites. And making changes in the electronic health record so that we can access more of that data has been really challenging. In Colorado we do have spaces in the record for patients’ preferred name and pronouns, and that matters a lot. If someone comes in and they’re gender non-conforming or transgender and someone calls them by their biological birth name, it can be very uncomfortable for them.

→ CU School of Medicine Faculty Member Receives NIH Award for Hospice Care for LGBTQ patients

For all of these reasons, we need to think about providing safe and affirming care for LGBTQ+ patients, beginning in the parking lot, going through the entire cancer center, and then back out into the parking lot. How do we let them know they are welcome? Do they see something that lets them know they’re welcome, like a safe-zone sticker or a rainbow flag? Are their loved ones and support people, who might not be their parents or spouse, greeted with a welcoming environment? Do we have anti-discrimination policies?

Our goal is to increase patient-centered care and communications. If we create that for one population, we create that for all populations.

You just submitted an RO1 research grant proposal focused on improving cancer care and outcomes for LGBTQ+ people. Can you tell me about it?

The grant will be based at the CU Cancer Center and four other sites nationwide, so we can compare and contrast best practices among cancer centers.

We’re looking at things like data collection – are we collecting all the information we need about LGBTQ+ patients, not only to provide better patient-centered care, but also for research purposes? We’re also looking at improving policies and procedures at cancer centers so that patients know they have non-discrimination policies to protect them. We’re working on training for staff, providers, and administrators, so that everyone in the organization is up to date on best practices for providing care and a welcoming environment.

And we’re looking at what patients need directly – do they need more LGBTQ+-specific information about their cancer? How can we reduce isolation when they’re in cancer treatment and survivorship care? Do they need LGBTQ+-specific support groups?

It will be a few months before we know if it is accepted, but we are hopeful it will be so we can continue this important work.

Are there aspects of your personal experience that inform your work?

I came out of the closet in the 1980s, during the HIV and AIDS epidemic. I was in Oklahoma, and several friends died of AIDS. No one was talking about it and there was no help. There was a lot of stigma and discrimination about screening and treatment, and often there still is.

That experience launched my desire to pursue a career in research and focus on LGBTQ+ health care. Someone needed to do it, I felt that I had the capacity and interest. I have always felt an obligation to try to make things better for people in my community.

Are you hopeful about progress ahead?

While this discussion of health and cancer disparities facing the community sounds terrible, where we are now with regards to LGBTQ+ health versus 20 years ago is night and day. We’ve made huge strides. We have better care and safe spaces. We recognize that LGBTQ+ people have different health care needs.

A good friend of mine who is trans reminds me often that LGBTQ+ people ‘are extremely resilient. We have taken care of ourselves for a long time.’ Although I know this to be true, I look forward to the day when we don’t have to take care of ourselves so hard. I’m glad we’re getting to a point where we’re making some inroads, where we have research collaborators and trained health care providers working together provide better health care for LGBTQ+ people.