Challenges and Issues the LGBTQ Community Face with Cancer
The LGBTQ community celebrated Pride month in June, and, despite the ongoing pandemic, Pride month rallied on with its message of awareness and acceptance of individuals from the LGBTQ community.
Often heteronormative ideals assume struggles of the LGBTQ community are limited to denial of freedom to be who they are. And it definitely is the biggest challenge they face; however, it is not the only one. Heterosexual society may assume the struggles the LBGTQ community face are limited to those that center around the denial for them to simply be as they are.
The challenges and issues the LGBTQ community face are intersectional. They transcend and overlap class, culture, race and can hinder access to education, jobs, opportunities, and most importantly, healthcare. Equal access is often filled with hurdles because, while we have progressed as a society to think as individuals where we can embrace our own gender, identity, and who we love, we still lag behind in accepting that differences can often correlate to different needs. And those needs require understanding, validating, and support throughout our collective system.
Cancer and LGBTQ
While any person receiving a cancer diagnosis may experience detrimental psycho-social implications to their general well-being and overall quality of life, those in the LGBTQ community may see that exacerbated. This can extend to numerous parameters of their personal, social, and professional life.
Currently, there is not even one cancer registry that collects information about gender identity or sexual orientation. Without this data, the experiences and outcomes for LGBTQ cancer survivors are often left to assumption. Coupled with stigma, bias, and myths surrounding the community, these assumptions can lead to discrimination and compromised care.
LGBTQ Community and Cancer Risk
Due to unequal access to care and systemic discrimination, the LGBTQ community may find itself at a higher risk for some cancers. For example, studies have shown that the LGBTQ community uses tobacco at nearly twice the national average and its initial use can be traced to early experiences of discrimination, bullying, and internalized homophobia in LGBTQ youth.
Some cancers also seem “endemic” to certain disadvantaged populations. For example, Lesbians are considered to have the densest cluster of breast cancer risks (Cochran & Mays, 2012). Gay men have high rates of human papillomavirus infection (65% in gay men who are HIV-negative and 95% in gay men who are HIV-positive) (Margolies & Goeren, 2013). When HIV infection is coupled with high tobacco use, the risk increases dramatically for anal and other cancers (Sahasrabuddhe et al., 2013).
In Trans individuals, exogenous hormones may increase the risk for multiple cancers (New York Department of Health, 2013).
The unique barriers the LGBTQ community face play detrimental roles in accessing the health care system, for both preventive and essential care, resulting in disparities in cancer risk and treatment.
Issues in Accessing Healthcare for the LGBTQ
● Fear of discrimination: LGBTQ individuals often worry that revealing their sexual orientation or gender identity will jeopardize the quality of health care they receive and eventually the outcome of their condition.
● Previous negative experiences: Previous unpleasant experiences in healthcare systems.
● Lower rates of health insurance: LGBTQ people are historically more likely to be uninsured than their heterosexual counterparts (Krehely, 2009). Health insurance policies sometimes do not recognize unmarried partners or same-sex married partners. This makes it harder to get the needed health care coverage. Legal protections against discrimination at both the state and federal levels are inconsistent.
● Outright denial of care: While the understanding of LGBTQ identities is growing, homophobia and transphobia still remain unfortunate realities resulting in some of this community having to fight for the care they deserve. For example, research suggests one in five transgender patients have been turned away by a health care provider.
UNIQUE CHALLENGES FACED BY THE LGBTQ COMMUNITY IN CANCER CARE:
1. Sharing Their Diagnosis
After a cancer diagnosis, the first human response is often to share that information with loved ones and seek support from family, friends, and the treating team. Such basic intent is often clouded with fear for the LGBTQ community.
One is faced with the dilemma of whether it is safe to come out to their oncologist and treatment team. Even those who otherwise may be comfortable revealing their sexual orientation or gender identity may find themselves fearful of alienating a provider when they have a life-threatening illness such as cancer. The latest research supports the idea that an empathic oncologist can help survivors understand their diagnosis, endure difficult treatments and perhaps even fare better medically.
2. Unrecognized Family Systems
LGBTQ people create families in ways that are often unrecognized in a health care setting. Administrative barriers snowball for this community, e.g., intake forms ask only about legal marital status, rejecting same-sex non-legal partnerships. Healthcare teams hence may not ascribe same-sex non-legal partners as important decision-makers for treatment.
3. Insufficient Support Throughout Cancer Care
Cancer treatments are known to affect sexual functioning; however, the impact of cancer on LGBTQ sexuality is rarely spoken about.
For example, after treatment for prostate cancer, the experts state that most men can still have an erection “good enough for intercourse”. This is not helpful for a gay man who needs to have a stronger erection for anal sex or know if it's even safe to do so. Even when fears are shed and the patient may ask these questions, the oncologist may often be ill-equipped to answer.
4. Ineffectiveness of Support Groups
The partner of the Lesbian breast cancer survivor may often be the only woman in her caregiver group. Similarly, the gay male partner of the prostate cancer survivor will, most likely, be the sole man in his caregiver group. This greatly diminishes the likelihood of receiving knowledgeable support for some of the stresses and sexual difficulties they have.
SUGGESTIONS TO LESSEN CHALLENGES FACED BY THE LGBTQ COMMUNITY
1. Facilitate Disclosure
Professionals can do so by using gender-neutral terms (e.g. partner) and not using language that makes assumptions about the person with cancer (e.g. Mrs). Usage of correct pronouns also makes them feel acknowledged and hence promotes disclosure. When supporting (or caring for) LGBTQ patients not making assumptions about individuals in the LGBTQ community, their sexual orientation, relationships, living arrangements, or support network helps to normalize their choices and helps foster a healthy working relationship.
2. Access to Support
The LGBTQ community may feel isolated when using cancer support services. Healthcare providers can strive to ensure that activities and discussions develop services specifically for LGBTQ individuals, like providing dedicated support groups.
3. Access to Information
Written materials on cancer may assume heterosexuality which can be offset by also providing and/or displaying materials that incorporate the LGBTQ experiences. When healthcare settings demonstrate they are LGBTQ-friendly by proving these materials in their waiting area, website, or even by wearing an LGBTQ-friendly badge, these actions contribute to the improvement of representation and great access for the community.
4. Involving Partners and Caretakers
Most cancer patients wish to have their partners and caretakers involved in their care and this is no different for the LGBTQ community. They want their partners' involvement to be welcomed, appreciated, and respected by their cancer professionals.
5. Community Effort
It is the willingness to learn more about LGBTQ individuals, their experiences, and the challenges they often face. It is the use of terminology that embraces the LGBTQ community as an important way to begin to help. Members outside of the LGBTQ community can come together to create spaces that are inclusive and healing where every person no matter their identity or sexuality feels safe to be themself.
*Sharika Amin is a licensed Clinical Psychologist working in Kashmir with Doctors Without Borders.
Sharika received her MPhil in Clinical Psychology at Dr. Ram Manohar Lohia Hospital (PGIMER) and Masters in Clinical Counseling and Applied Psychology at Delhi University. We thank Sharika for volunteering and helping the GRACE community!
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