Growing up in an informal settlement in Western Kenya, I lived in a society that labeled young women working in bars as “bad girls” who would teach the good ones “bad manners.” Nobody, not even their families, wanted to be associated with them. My family took in a cousin of mine who had been excommunicated by her family for working as a bar waitress in our hometown. I loved her dearly — she was my hair and fashion stylist and we got along very well as she was just three years older than I.
Mercy Mutonyi at the IAVI HVAD 2019 workshop
I always thought HIV was a disease that could never touch my family or anyone close to me. And then my dear cousin, who was then 18 years old, became infected with HIV and later died due to AIDS-related complications. After her death, I realized anyone can be infected with HIV, and everyone needs access to quality HIV treatment and prevention services irrespective of what they do for a living. My cousin, my friend, and my hairstylist need not have died due to something that could be prevented, treated, and managed.
The stigma and discrimination surrounding HIV are major barriers to ending the epidemic. The stigma toward certain categories of people like bar hostesses and sex workers makes things even worse. For five years, I have been an advocate for female sex workers (FSWs) and vulnerable young women in Kenya, making sure that they have access to HIV prevention and treatment services. These two categories of women are among the groups of people at a higher risk of contracting HIV. Due to stigma and criminalization, they are often unable to access the services they need.
Growing up and through my work, I have had FSWs share their personal experiences with me. I got to understand better the many challenges they face and how they contribute to the high prevalence of HIV. I started working at the Bar Hostess Empowerment and Support Program (BHESP) in 2015. BHESP is a community-led organization whose mission is to influence policy and facilitate the provision of quality health services, human rights awareness, legal services, and economic empowerment for sex workers, women who have sex with women, women using drugs, and bar hostesses in Kenya. When I joined BHESP, the clinic that was supposed to provide HIV comprehensive prevention, care, and treatment to most at-risk populations, or Drop-in Centre (DICE), did not yet have the capacity to offer the anti-retroviral treatment (ART) package. Often, I would refer women to the public facility for ART initiation, but many would drop out of treatment due to negativity and judgmental treatment from the health care workers and stigma and discrimination from the community. Other times, my clients were unable to stick to their treatment because they had been arrested for sex work and were denied drugs while in police custody. I felt driven to do more to address their unique challenges by advocating for strategies that would enhance their access to and acceptance of HIV prevention and treatment interventions. Through consultations with the Kenya National AIDS and STI Control Programme and the county government and by training of law enforcers on sex workers’ rights, the key population DICEs were expanded to offer comprehensive services including ART services.
I later found myself serving as a project manager for the PEPFAR-funded Determined, Resilient, Empowered, AIDS-free, Mentored, and Safe (DREAMS) Innovation Challenge. My new role gave me the opportunity to represent young people and FSWs in technical working groups and task forces addressing the structural HIV interventions such as policies, environment, and harmful social norms. Additionally, as a member of the county adolescent girls and young women technical working group, I have been able to share the needs for youth-friendly services and information as well as the right to be treated with dignity and not to face discrimination by health care workers.
As I was growing up, my dream was to be a nurse advocate like Florence Nightingale. I am glad that through living my dream, I can make a difference in the lives of many young women who shouldn’t be made to suffer as my dear cousin did.
