Cancer Care for the LGBTQ+ Patient: Creating Equity in Oncology and Community

by Hailey JohnstonSurvivor, Hodgkin’s LymphomaJanuary 26, 2021View more posts from Hailey Johnston

Lesbian, gay, bisexual, transgender, queer/questioning, plus (LGBTQ+) folks come from a variety of cultures, ethnicities, races, age-groups, and life experiences. These highlighted intersections are to act as a guide for the LGBTQ+ community, allies, and medical professionals on barriers the LGBTQ+ community faces in cancer-related care, what resources are available, and how we can support equitable change in oncology care and cancer community spaces.

The LGBTQ+ community faces more barriers to healthcare than their heterosexual and cisgender peers. In a recent rollback on protections for sexual and gender minority individuals stated in section 1557 of the Affordable Healthcare Act (ACA), healthcare providers can now deny services to the LGBTQ+ population if they ‘disprove of’ their sexual orientation and/or gender identity. What does this mean for the LGBTQ+ community? Studies have shown that LGBTQ+ individuals disproportionately face discrimination in healthcare throughout history and do not have full access to preventative care or treatment options for cancer.

The discrimination LGBTQ+ people face in healthcare is multi-faceted and prevalent in several different ways. LGBTQ+ individuals experience homelessness and unemployment at significantly higher rates than those who identify as cisgender and heterosexual. These, among other factors such as transportation and rural location, substantially reduce the LGBTQ+ community’s access to healthy living and inhibit the ability to obtain health insurance. If an LGBTQ+ individual has health insurance, not only can healthcare providers legally deny them treatment/care on the basis of ‘religious freedom,’ but the privatized nature of the United States healthcare system allows insurance companies to choose what they cover on their available insurance plans. Gender-affirming surgery is often not covered under insurance and is considered ‘cosmetic’ and ‘non-essential.’ For individuals who have had their gender marker legally changed from male to female or female to male, insurance may also deny coverage on lifesaving cancer preventative care. For example, transgender men who have not undergone a bilateral mastectomy or hysterectomy may have a more challenging time receiving or may be denied insurance coverage for breast and cervical cancer screening such as pap smears and mammograms if they have legally changed their gender marker to ‘male.’

Due to these barriers regarding healthcare and more, distrust in healthcare professionals providing quality medical treatment is common among those who identify as LGBTQ+. The community experience with discrimination, perceived stigma, and the aforementioned systematic barriers have decreased the likelihood of having designated primary care physicians and utilization of healthcare services in comparison to their cisgender and heterosexual counterparts. Distrust is especially prevalent among racial and ethnic minority LGBTQ+ community members due to experiencing racism, xenophobia, and language barriers with medical professionals in addition to discrimination based on their LGBTQ+ identity.

With a lack of access to health insurance and discrimination within our healthcare systems, LGBTQ+ individuals are at higher risk for several different cancers (e.g., anal, penile, and oropharyngeal). LGBTQ+ individuals also have a higher chance of being diagnosed at a more advanced cancer stage than those who are heterosexual and cisgender. And in a survey published by the Journal of Clinical Oncology, 45.6% of respondents being medical oncologists, 53.1% of participants felt confident in their knowledge of healthcare needs among lesbian, gay, and bisexual patients, and only 36.9% felt confident in their understanding of healthcare needs for transgender patients. Though these numbers are relatively low, 95.3% felt comfortable treating lesbian, gay, and bisexual patients, 82.5% felt comfortable with treating transgender patients, and 70.2% of participants indicated a strong interest in education on the unique healthcare needs of LGBTQ+ patients.

While there is a clear interest in LGBTQ+ health education among Oncology professionals, it has yet to be widely integrated into the medical school curriculum and training. Medical students are beginning to push for the adoption of this education. This education is crucial for medical professionals to receive because, through being informed on LGBTQ+ care, the community will have greater access to the healthcare they need. LGBTQ+ organizations, such as Escape and the Transgender Cancer Patient Project, offer services to provide general education on the community and how medical staff and health-related paperwork can be more inclusive of the LGBTQ+ population until formal instruction is a part of medical training.

Additionally, outside of systematic barriers, there are also community barriers for those who identify as LGBTQ+. Family and faith community rejection is common among those who identify as LGBTQ+, creating more significant hardship during a cancer diagnosis. Without family support, LGBTQ+ patients may have increased difficulty getting basic needs met, such as food security, a clean space, transportation to chemotherapy and radiation, and help to navigate everything that comes with the cancer experience. Support networks may look different for LGBTQ+ cancer patients while undergoing treatment and survivorship due to familial alienation. ‘Found’ or ‘chosen family’ are often used in the community to describe people in their lives who have taken on domestic roles after experiencing separation from the family they were raised within.

Community is a crucial element in navigating a cancer diagnosis, but there are very few resources for inclusive cancer-specific support for the LGBTQ+ population. While cancer support organizations might not exclude people based on sexual orientation or gender identity, they may not always be safe for this population. Those within the LGBTQ+ community may feel like they cannot be their authentic selves in these spaces. Through LGBTQ+ cancer specific support communities, individuals can build friendships and found family, share what they’re going through with people who understand on a deeper level, and share information on doctors who provide affirming care.

Organizations that are working toward eliminating these barriers both systematically and communally are Escape, the Transgender Cancer Patient Project, and Queering cancer. Escape primarily serves LGBTQIA+ individuals who have been affected by cancer between the ages of 13 and 39. Escape currently provides the largest online LGBTQIA+ cancer support groups, and they have taken measures to privatize their support spaces to reduce the risk for those who are not out to their families. Escape also offers a blog, LGBTQIA+ education training for medical professionals, online community events through Zoom, and information on advocating for yourself as an LGBTQIA+ cancer patient. Escape plans to expand their offerings in the future to include: a database outlining affirming doctors, a podcast, summer camps/retreats, an app for the community to connect, in-person support groups, and an allyship space for those interested in creating equity for this population. Escape is also in the process of obtaining non-profit status, and they are currently accepting applications for board members.

The Transgender Cancer Patient Project is created by and for transgender cancer patients. The Transgender Cancer Patient Project’s currently offers the largest transgender cancer patient online support community. They also provide zines about the transgender cancer patient experience as well as zines that act as fun educational materials about pronouns and trans identity! The project works hard to make all their resources accessible, and you can read their zines online for free!

Queering cancer is a new database that outlines hundreds of articles, websites, and other resources, specifically for the LGBTQ2+ cancer community. Queering Cancer also offers support groups and a blog for those within the community. You can find Escape and the Transgender Cancer Patient Project in their database, as well as a wealth of other information and supports.

All of these organizations are working diligently to serve this population of cancer patients and survivors, but it’s not enough. The protections for LGBTQ+ patients in the United States, ensuring equal healthcare has been stripped away and research is scarce on cancer and the LGBTQ+ community. The fight for equal rights is a constant uphill battle, and there is so much more work that needs to be done to create equity in this community. Cancer can happen to anyone, regardless of sexual orientation or gender identity, and we need healthcare and cancer support that is inclusive of all people. How can you get involved?

For more information on the organizations mentioned and additional support, please contact Escape at escape.yac@gmail.com or contact us through our website at escapeayac.org.

Sources

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Burns, K. (2020, April 24). The Trump administration will now allow doctors to discriminate against LGBTQ people. Retrieved November 02, 2020, from https://www.vox.com/identities/2020/4/24/21234532/trump-administration-health-care-discriminate-lgbtq

Cohen, R. D. (2019, January 20). Medical Students Push For More LGBT Health Training To Address Disparities. Retrieved November 02, 2020, from https://www.npr.org/sections/health-shots/2019/01/20/683216767/medical-students-push-for-more-lgbt-health-training-to-address-disparities

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Shor Salkas, M. (2018, March 02). Join Us in Celebrating Transgender Cancer Survivors – CONQUER: The patient voice. Retrieved November 02, 2020, from https://conquer-magazine.com/issues/2018/vol-4-no-1-february-2018/636-join-us-in-celebrating-transgender-cancer-survivors

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This article was in our December 2020 Magazine – Click Here to view that issue!


All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://www.elephantsandtea.com/contact/submissions/.

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