By Tiffany Rice
Lesbians and bisexual women are both underrepresented populations in current research on aging and health disparities, according to a review of available literature. Traditional health literature has grouped lesbians, gay, bisexual and transgender (LGBT) people, ignoring the differing health needs of each group. Further review of research reveals that even less is known about the health concerns of elder Black lesbian and bisexual women.
Because of this gap in research, contemporary researchers have deemed cancers—particularly gynecological cancers—an overlooked health disparity impacting lesbian and bisexual women. Gynecological cancers are a group of cancers impacting sex organs in the pelvis. Cervical cancer, also called uterine cervix cancer, is the second most common form of gynecological cancer impacting Black women, following uterine corpus cancer.
Cervical cancer is caused by human papillomavirus (HPV), a type of skin virus. Because of cervical cancer’s slow growth rate it is the easiest gynecological cancer to prevent. The median diagnosis age is 48, and women older than 65 represent 20 percent of newly diagnosed cases.
About 12,000 new cases of cervical cancer occur each year in the United States, leading to 4,200 deaths. Screening via regular Pap tests allow healthcare providers to find and treat abnormal cells before they turn into cancer. Most cases of cervical cancer occur in women who have never been screened, or in those who have not been screened in the past five years. Between 2011 and 2012 there were 2,170 Black women diagnosed with cervical cancer. Based on figures from a national sample, about 38 percent of lesbians, compared to 13 percent of the general population, did not report receiving regular cervical cancer screenings.
Cervical Cancer Risks Factors
Risk factors for cervical cancer fit into a number of loose categories, including: behavior risks; social or demographic risks; and, medical or genetic risk factors. Behavioral risks include smoking, past sexually transmitted infections, lack of Pap tests and diets lacking fruit and vegetables. Social and demographic factors include parity (birthing children) and poverty. Medical or genetic factors include use of birth control, family history, age, immunosuppression and use of the anti-miscarriage drug Diethylstilbestrol (DES).
Lesbian and bisexual women of color have been shown to exhibit more behavioral risk factors for cervical cancer than heterosexual women. And being an elder Black woman may bring a host of other risk factors that are not as prevalent in younger populations. For example, elders constitute a large portion of people living in poverty in the United States, with women experiencing double the rate of poverty as men. Other possible risks are higher rates of autoimmune disorders like lupus and the number of children one has over one’s lifetime.
Barriers to Screening
While increased risk of cervical cancer may point to a greater need for screening among elder Black lesbian and bisexual women, barriers exist that make access difficult. While the overall rates of cervical cancer have decreased in the past 50 years because of affordable and readily available Pap tests, Black lesbian and bisexual women are still not visiting their gynecologists as often as other populations. Literature consistently points to the role of education and discrimination as barriers to screening in Black women. Black women who have attained higher levels of education are more likely to obtain Pap tests.
Many women have ill-conceived notions leading them to disregard the need to be screened. This disregard can come from elder Black lesbian and bisexual women or from treatment providers. Many providers buy into the dangerous misconception that women with same sex partners do not or have never had sex with men. One’s sexual history with men inappropriately becomes the deciding factor of whether or not to screen.
Another barrier to cervical cancer screening faced by elder Black lesbian and bisexual women is discrimination from healthcare providers. Discrimination can be because of race, age, sexual orientation or gender presentation. Women who present in a gender-nonconforming manner often experience discrimination based on their gender presentation and perceived lesbian sexual orientation. On the other hand, bisexual women routinely experience being judged as promiscuous by healthcare professionals.
What Providers Can Do
In addition to engaging in reflective practice, providers must actively advocate for programs that address disparities experienced by this community. They must recognize the history of invisibility and discrimination that acts as a barrier to early detection and treatment. Outreach must be transformed to reflect inclusive methods of engaging community members. Such methods recognize that individuals are embedded in multiple communities. The values of these communities must be recognized and engaged in the process of developing interventions.
Providers and consumers also must consider building coalitions to educate and advocate for increased attention and funding to support education efforts. Both providers and consumers must raise their level of awareness to include existing resources. For example, the Mautner Project is a national lesbian health service that offers trainings and referrals for service providers. The agency also provides referrals, educational programs and social services for elder Black lesbian and bisexual women with cancer.
Other programs include:
Tiffany Rice is a social work Ph.D. candidate at Morgan State University in Baltimore, Md., who currently works as a research associate, specializing in qualitative research.
This article was brought to you by the editorial committee of ASA’s LGBT Aging Issues Network (LAIN).