March 6, 2023
On the Journey to More Inclusive Health Experiences
Reading time
Kelly Brown
Earlier this year, we were fortunate to have Ira Feinstein join the Totally Clinical podcast to share his story of learning that he carries the BRCA1 gene and subsequently navigating medical care as a transgender man. We originally connected with Ira through the LGBTQ+ advisory group we hosted last year in collaboration with the Center for Information and Study on Clinical Research Participation (CISCRP). There are a few things from the podcast that I would like to reflect on.
“I was surprised with how small things can be easily changed and make a huge difference even if you just have it on the form to acknowledge their gender,” Ira says. “But that's a small thing that tells somebody ‘I'm welcome here’ and that those small changes have been happening.”
I find that this quote nicely sums up one of the reasons that diversity, equity and inclusion initiatives are so important, whether in the context of clinical research, healthcare overall, or other aspects of life in general. It’s a basic human need: we want to feel like we belong. Progress is made in a series of small steps forward, and as the report points out and Ira reiterates, small things can be very impactful. Medical forms are one example, and we are seeing progress towards a broader range of options for gender identification.
Complicated Experiences with Medical Providers
A few times during the podcast, Ira talks about needing to feel both safe and respected. When it comes to medical care, which can also be when we are most vulnerable, everyone wants medical staff to treat them with respect and create a safe environment for an open discussion. Still, one of my takeaways is that it is hard for LGBTQ+ people. Ira describes his disappointment of reviewing medical notes from a cardiologist who made him feel welcomed as a transman only to find “she” written throughout his notes.
“It was a very strange experience because the doctor had been very welcoming, and he had said he had worked with trans patients before. He had been respectful in person. And then I read my notes,” Ira explains. “I felt like somebody had punched me in the gut. Whether it was an accident or was an automatic thing that had happened when he verbally put the notes in, it just caused that distress to arise all over again.”
Ira’s complicated engagement with medical providers started early in his life and before he transitioned. His mother and both maternal and paternal grandmothers died of breast cancer. His intuition told him he needed genetic testing to see if he had a harmful variant. As a 20-year-old, he convinced doctors to test him, and it confirmed he had a BRCA1 gene mutation.
Knowing was just the beginning of the battle as Ira set out to research cancer options. Given a likelihood that he could develop breast and ovarian cancer, Ira first had a mastectomy and then a later hysterectomy. In what might be described as a twist of fate, the gene mutation gave him the opportunity to explore his gender.
“I remember getting my genetic testing done and realizing that having the mutation would give me this opportunity to explore my gender without ever having to name my gender identity or my gender confusion to the medical community,” Ira says.
But at the same time, Ira was also worried about what the doctor would think of him.
“I didn't have any reconstruction because I couldn't bring myself to have the conversation with the surgeon that maybe I wanted construction to look more masculine. At the time I thought, if I have this conversation with this doctor, she may think that I'm crazy. She may think that I'm too confused to have a mastectomy. She could have thought any number of things and the power that a surgeon or any sort of doctor can have on your medical wellbeing and your mental wellbeing for that matter – it wasn't worth the risk.”
Championing Diversity, Equity and Inclusion for Everyone
We are fortunate that people like Ira are willing to share their stories, which I believe will be for the betterment of inclusivity. For all his experiences, Ira is optimistic for the future of medical care for LGBTQ+ people. While change is slow, he has seen changes over his life. And I like his vision for physicians “coming to each patient in a place of neutrality without making grand assumptions about who they are and what they want for their life.”
With an open mind, kindness in our hearts, and empathy towards the struggles of each of us as human beings, I hope we will see momentum carry forward diversity, equity and inclusion initiatives.
