Pride Month: Addressing and Overcoming Health Disparities for LGBTQ+ Cancer Patients
Editor’s Note: This blog was originally published in June 2020 and has been updated for relevancy and comprehensiveness.
Every June, Pride Month is celebrated across the country to commemorate the 1969 Stonewall Inn uprising and to celebrate diversity, promote dignity and equal rights, and increase visibility.
The Cancer Support Community (CSC) recognizes that it is more important than ever to celebrate and support community while also acknowledging that there is much work needed in overcoming health disparities in the LGBTQ+ (lesbian, gay, bisexual, transgender, queer, and the plus sign includes other identities) community. Health disparities occur when certain populations have a disproportionate burden of disease, like cancer, due to social, environmental, and economic factors.
The LGBTQ+ community has long faced discrimination, bias, stigma, and inadequate healthcare. LGBTQ+ individuals also often face barriers to accessing care within the healthcare system. Cases of discrimination or harassment and negative experiences with doctors or nurses in the past may cause LGBTQ+ people to not seek medical attention when a health concern occurs.
CSC is committed to addressing and reducing the health inequities faced by the LGBTQ+ community.
Barriers to Care
In 2016, the LGBTQ+ community was identified as a “health disparity population” by the National Institute on Minority Health and Health Disparities (NIMHD), noting growing evidence showing that LGBTQ+ populations have less access to healthcare and higher burdens of certain diseases such as cancer (NIMHD, 2016). NIMHD reports that stigmatization, hate-violence, and discrimination are still major barriers to the health and well-being of LGBTQ+ individuals. LGBTQ+ people of color may face even bigger barriers to health equity and access to cancer care because of a host of factors, including:
- systemic racism
- lack of trust of the healthcare system
- lower levels of cancer prevention, screening, and early detection
- challenges around access to high-quality cancer care
- cost of care
The need for a safe space inside the doctor’s office is critical to the well-being of a patient, yet the fear of discrimination can cause many LGBTQ+ people to avoid seeking healthcare. In a National Center for Transgender Equality survey report, 23% of transgender respondents did not see a doctor when they needed to because of fear of being mistreated as a transgender person. In addition, 25% of survey respondents reported a health insurance issue related directly to being transgender (James et al., 2016). Another study from Lambda Legal showed that 56% of LGB people and 70% of transgender people reported experiencing discrimination by healthcare professionals, including refusal of needed care, being blamed for their health status, and harsh language (Lamda Legal, 2010).
Cancer survivors in the LGBTQ+ community face a unique set of challenges, as well. There is an estimated 420,000 to 1,000,000 LGBT cancer survivors in the United States (Kamen, 2017). Disparities in cancer survivorship include higher post-treatment stress levels, challenges with relationships and substance abuse, and relatively poorer overall health. Studies have shown that LGBTQ+ people have 1.5 to 3 times higher rates of psychological distress than non-LGBTQ+ cancer survivors (Kamen, 2017).
The Need to Eliminate Health Disparities
It is important to understand how to close these gaps in healthcare, because some studies have shown that the LGBTQ+ community has a higher risk of being diagnosed with certain cancers relative to non-LGBTQ+ people. According to a 2018 study, gay and bisexual men are about 20 times as likely as heterosexual men to develop anal cancer (Patel et al., 2018). Other studies have shown that “lesbian and bisexual women may be at increased risk for breast, cervical, and ovarian cancer compared to heterosexual women” (American Cancer Society, 2020). Because none of the large national cancer registries and surveys of new cases of cancer collect data about sexual orientation or gender identity, we still do not know nearly enough about cancer in the LGBTQ+ community.
Last year the previous Administration released a final rule that undermined Section 1557 of the Affordable Care Act (ACA), the law’s primary anti-discrimination provision. Section 1557 of the ACA prohibits discrimination based on race, color, national origin, sex, age, and disability in health programs and activities receiving federal financial assistance. It is the first federal civil rights law to prohibit discrimination in healthcare based on sex. Since the rule had potential to encourage discrimination in healthcare, CSC joined more than a dozen patient groups in filing an amicus brief ("friend of the court").
In May 2021, the current Administration reversed the policy, stating that it would interpret Section 1557 to include discrimination on the basis of sexual orientation or gender identity. CSC applauds this decision. We believe that discrimination on the basis of sex, gender identity, transgender status, sexual orientation, and similar characteristics has no place in our healthcare system.
Addressing the health disparities that the LGBTQ+ community faces is a step towards improving the health and well-being of the LGBTQ+ people with cancer and survivors. CSC will continue to advocate for healthcare policies that break down inequities and enable all individuals to have access to affordable medical care and support.
LGBTQ+ Cancer Resources
Whitman-Walker Health, a leading nonprofit community health center in Washington, D.C., is committed to meeting the healthcare needs of LGBTQ+ individuals.
As a Health Care Partner, Whitman-Walker utilizes CSC’s social and emotional support programs. Whitman-Walker assures that people can be themselves at their organization. Their healthcare professionals are dedicated to treating people with dignity, respect, humility, and empathy.
There are other resources that can help LGBTQ+ people with cancer and survivors find resources and pro-LGBTQ+ medical providers to ensure a safe space. These include:
- National LGBT Cancer Network
- The National LGBT Cancer Project
- The Gay and Lesbian Medical Association (GLMA)
- National Institutes of Health: Sexual & Gender Minority Research Office
American Cancer Society. (2020). Cancer Facts for Lesbian and Bisexual Women.
Lamda Legal. (2010). When Health Care Isn’t Caring.
James, S. E., Herman, J. L., Rankin, S., Keisling, M., Mottet, L., & Anafi, M. (2016). The Report of the 2015 U.S. Transgender Survey. Washington, DC: National Center for Transgender Equality.
Kamen C. (2018). Lesbian, Gay, Bisexual, and Transgender (LGBT) Survivorship. Seminars in oncology nursing, 34(1), 52–59.
National Institute on Minority Health and Health Disparities. (2016). Director’s Message for October 6, 2016.
Patel, P., Bush, T., Kojic, E.M., Conley, L., Unger, E.R., Darragh, T.M., Henry, K., Hammer, J., Escota, G., Palefsky, J.M., & Brooks, J.T. (2018). Prevalence, Incidence, and Clearance of Anal High-Risk Human Papillomavirus Infection Among HIV-Infected Men in the SUN Study. The Journal of Infectious Diseases, Volume 217, Issue 6, 15 March 2018, 953–963.