LGBTQ Breast Health & Awareness: An Interview with Elijah Grossman, Susan G. Komen Puget Sound
December 2016 | Elijah Grossman, MSW (he/him/his), Community Advocate, Susan G. Komen Puget Sound
Telll us a little bit about your background and professional life.
I have been an LGBTQ rights activist and advocate for a decade, most recently serving as a member of the LGBT Commission for the City of Seattle. I earned my undergraduate degree in Sociology from Virginia Tech and recently graduated from the University of Washington with a Master of Social Work degree with a concentration in Community-Centered Integrative Practice, meaning I work with community-based organizations to create systemic change.
As a transgender man, the LGBTQ community’s access to equitable health care is near to my heart. I transitioned socially, medically, and legally in rural Virginia where I literally had to drive over 100 miles to find a doctor willing to treat me. I have always been incredibly open throughout my journey because I want to help folks understand what it is like to navigate the world as a transgender person.
Now I am amplifying more voices from the LGBTQ community in my career as a Community Advocate at Susan G. Komen Puget Sound where we are developing an LGBTQ breast health toolkit to supplement LGBTQ cultural sensitivity curricula. We hope that by increasing provider knowledge about the LGBTQ community we will help bridge trust between the community and the health care system, thereby increasing the rate that the LGBTQ community accesses preventative care such as mammography while also working toward systemic change that increases broader health equity for the LGBTQ community.
You recently conducted research on Breast Cancer and the LGBTQ Community. What were some of the key findings from this research?
Komen Puget Sound knew from external research that the risk for breast cancer is high for sexual minority women, and our 2015 Community Profile Report examining underserved populations in the Puget Sound area highlighted that the local LGBTQ community faces several barriers when accessing health care including social stigma around LGBTQ identities and a lack of cultural sensitivity from health care providers. In order to increase health equity for the LGBTQ community, Komen Puget Sound plans to develop an LGBTQ breast health toolkit with breast health education components for the LGBTQ community and cultural sensitivity components for health care providers. Our first step was to learn more about the experiences of the LGBTQ community when accessing heath care in Washington State, and these are some of the findings:
- Our research indicates that 31% of the local LGBTQ community typically either delays or never seeks preventive care such as mammography, pap tests, STI testing, etc. Transgender and gender non-conforming people are much less likely to seek preventive care than cisgender sexual minority women. In fact, 41% of transgender men, 39% of gender non-conforming people, and 29% of transgender women typically delay or never seek preventive care compared to 21% of cisgender sexual minority women.
- The two primary reasons that the local LGBTQ community delays or never seeks preventive care are lack of cultural sensitivity from health care providers and uncertainty of recommendations for screening guidelines. In particular, of people who indicated they delay or never seek preventive care, 83% of transgender men and 67% of gender non-conforming people reported that the reason was because of lack of cultural sensitivity from health care providers.
- Only 60% of the LGBTQ community in Western Washington age 50-74 had their recommended mammogram in the past two years. This compares with 76% of the general population in the Komen Puget Sound service area.
- Six out of seven people assigned male at birth and three out of ten people assigned female at birth received no information on breast health while growing up. None of these people were cisgender men, and all of them need to be aware of the breast cancer screening guidelines. When we leave people assigned male at birth out of the conversation around health care guidelines for breast cancer we put people at risk.
Were there any findings that surprised you?
Yes! Over half of participants in our research indicated that they always see a health care provider who either specializes in LGBTQ health or who is sensitive to LGBTQ identities. However, even when only looking at data from participants who always see an LGBTQ-friendly provider, just 29% rated their provider as “excellent” in the provider’s ability to understand the patient’s gender identity and/or sexual orientation.
In fact, 34% of people who always go to an LGBTQ-friendly provider rated that provider as neutral, poor, or very poor in their ability to understand the patient’s gender identity and/or sexual orientation. These numbers are even grimmer when we look at the entire sample, but surprisingly not by much. This highlights how much room for growth there is in LGBTQ cultural sensitivity in health care systems and the need for training in medical school.
How can LGBT Older Adult Service Organizations and LGBT Community Centers support Breast Cancer Awareness and Screenings?
- Encourage folks to get their mammograms! Early detection is vital.
- Support community health workers and patient navigators who help to guide people to and through the health system. Community health workers are often volunteers or underpaid, yet they work tirelessly as advocates for people in underserved communities by providing outreach and education, transportation to treatment, navigating difficult insurance policies, connecting folks to patient assistance programs or other resources, and more.
- Share knowledge around risk factors for breast cancer, and the known guidelines for screening for all genders. This can be difficult particularly for transgender people, because guidelines shift depending upon age at the start of transitioning, hormone usage, and surgery status, but there are some common misconceptions about risk factors that can be debunked. For example, many people dismiss their risk for breast cancer because they do not have family history, but only 5-10% of breast cancer diagnoses are from genetic mutation. Sites like World Wide Breast Cancer use gender-neutral language (this particular site uses lemons as a metaphor for anatomy) to teach about what breast cancer looks and feels like.
How can people learn more about your research?
You can check out the full report on LGBTQ health care experiences in Washington State for free here. If you are interested in learning more about the plans for our LGBTQ breast health toolkit or interested in joining our coalition please contact me at firstname.lastname@example.org or (206) 633-0303 ext. 106. We would love participation and feedback from as many people and identities as possible, particularly from people of color and from the transgender and gender non-conforming community!