Working Together to Advance Cancer Control and Reduce Stigma: Anal Cancer Prevention in the Nigerian SGM Community
, by Rebecca Nowak, Ph.D., M.P.H. Assistant Professor, Institute of Human Virology, University of Maryland School of Medicine Associate Member, Population Science Program, University of Maryland Marlene and Stewart Greenebaum Comprehensive Cancer Center
Pride month reminds us to take the time to honor those in sexual gender minority (SGM) communities and their continued struggle to secure one of life’s most basic rights: the right to live free from stigma and discrimination. Although some progress has been made on securing these rights, SGM communities continue to face unrelenting pressure to keep their true identities hidden from their families and communities in most of the world. Moreover, institutionalized discrimination contributes to poor health outcomes in all aspects of healthcare including cancer control.
Much of my research is based in Nigeria where the Same-Sex Marriage Prohibition Act was signed into law in January 2014. This law criminalizes same-sex sexual practices and prohibits the gathering of SGM communities with penalties of up to ten years of imprisonment. Such laws codifying already pervasive sentiments against SGM communities in Nigeria have significant implications for engaging the SGM community in HIV care and prevention. (1) The marginalization of SGM communities in Nigeria (2) undoubtedly contributes to new HIV infection by making it difficult, if not impossible, for the SGM community to seek out and receive appropriate healthcare such as HIV preventive services without exposing their sexual identities and making them subject to stigma, discrimination, and possible criminal prosecution.
Fortunately, Nigerian government agencies including the Federal Ministry of Health (FMoH), the National Agency for the Control of AIDS (NACA), along with the President’s Emergency Plan for AIDS Relief (PEPFAR) in Nigeria are acutely aware of the discrimination that SGM communities face in that country and the effects it has on achieving control over their country’s HIV epidemic. There are now up to 15 clinics in Nigeria, known as One-Stop Shops (OSSs), that provide safe spaces for SGM communities and other vulnerable individuals to receive HIV care and prevention outside of usual healthcare settings. I began and continue to work with the first OSS fittingly called TRUST which was opened in 2012 by the Institute of Human Virology, Nigeria, an affiliate of the University of Maryland School of Medicine, and has engaged over 2000 people in the SGM communitiy. (3), (4)
Beyond basic care, the Nigerian OSSs provide social support—a key promoter of engagement in care for marginalized groups—to the Nigerian SGM community. Studies conducted as part of our work with TRUST showed that stronger social support was associated with a greater likelihood of HIV testing, antiretroviral therapy (ART) initiation, and HIV viral suppression within six months of starting antiretroviral therapy (ART). (5) We also found HIV knowledge within the SGM community—another important factor in HIV prevention and treatment—improved with continued engagement in care. (6)
As a pilot feasibility study, I incorporated anal cancer prevention for those who sought care at TRUST in 2016-2017. At the time, we conducted over 500 anal cancer screenings within a year—a significant level of participation by the Nigerian SGM community considering the high levels of institutionalized discrimination. (7) Because of the safe spaces and support afforded to the Nigerian SGM community by TRUST and the various OSSs, that level of engagement endures today. This past fall, we conducted a survey to ask members of SGM populations living with HIV if they were worried about anal cancer and would be interested in being contacted in the future for anal cancer screening at TRUST. Within a month, 800 people in SGM populations answered the survey, 93.0% had concerns and 99.5% asked us to call them if screening became available.
Now firmly established, we have an opportunity to leverage the social networks and safe spaces provided by OSSs such as TRUST to make additional progress in establishing equitable healthcare for the SGM community. One area for such progress could be in the prevention of human papillomavirus (HPV) associated cancers. Approximately 70% of the SGM community living with HIV are infected with high-risk HPV that causes pre-cancer (high-grade squamous intraepithelial lesions [HSIL]) and anal cancer. (8) Until recently, the administration of HPV vaccines prior to the initiation of sexual activity was the only effective way to prevent anal cancer. Thankfully, this is no longer the case.
A recent randomized U.S. clinical trial, the Anal Cancer—HSIL Outcomes Research (ANCHOR) study, reported that treating anal HSIL as compared to a wait-and-see approach reduced the risk of anal cancer by 57%. (9) The findings from this study are timely as we continue to celebrate the remarkable progress and continued challenges facing SGM communities. OSSs, like the one established by TRUST, can introduce clinic-based effective treatments for anal pre-cancer to improve the health of the SGM community and translate the findings of NCI-supported cancer prevention trials to eligible populations worldwide.
Providing sexual health care to SGM communities cannot eliminate the discrimination, familial, and societal stigmas faced by SGM communities, nor can it take the place of true acceptance by their communities. But creating networks of support that focus on education, affirming healthcare, and cancer prevention together with continued resource allocation and advocacy will help us advance the goal that all of us should be striving for: a world in which individuals may live their lives authentically without compromising their health outcomes.