Sex workers band together to fight for healthcare justice

KAMPALA, UGANDA — Namusisi Allen does not tell her clients she is HIV positive.

The men who pay to sleep with her do not need to know, she says. She would lose business. Allen receives antiretroviral therapy and has undetectable levels of the virus in her body, meaning there is a less than four percent chance of transmission during her work. Because she uses condoms, the likelihood of transmission is even lower, according to the Uganda Aids Commission.

Namusisi Allen believes that having HIV does not hinder the ability to live, and those who are positive should not be seen as less than those who are negative.“We all have to die,” Allen says. (Nicole McPheeters | The Media School).

“I insist on using a condom” Allen says.  “Some people do not want to, but I say no, and I do not take their money.”

Sex workers like Allen have the highest prevalence of HIV in Uganda, but struggle to receive proper health care due to the criminalization of their profession.  When sex workers seek testing or medicine, they can encounter stigma, discrimination and even arrest.

Commercial sex work is a primary driver of the HIV virus in Uganda. Although the Uganda Aids Commission estimates the Ugandan sex worker population to be around 54,000, sex work accounts for 16 percent of new infections in the country. According to the 2015 UNAIDS Uganda progress report, 37 percent of sex workers are HIV positive, and prevalence is 18 percent among their partners.

Several organizations founded by commercial sex workers have stepped in to improve sexual and reproductive care access for these at-risk women. One such group is the Women’s Organisation Network for Human Rights Advocacy (WONETHA).

Daisy Nakato, founder and executive director of the WONETHA, says there is a widely-held perception that sex workers deserve to contract HIV. Nakato is a former sex worker currently living with HIV.

Daisy Nakato works for WONETHA, an NGO that works to promote sexual education, economic status and social change of adult female sex workers in Uganda. Nakato founded the organization in 2008 along with Catherine Namagembe and Macklean Kyomya. (Nicole McPheeters | The Media School).

“Our work is not accepted as work,” Nakato says. “We are criminals before the people, and many health workers share that perspective.”

A report by the International Community of Women Living with HIV Eastern Africa (ICWEA), found that in extreme cases, health care workers have coerced sex workers living with HIV to undergo sterilization in the form of tubal ligation.

Katrina* was nineteen years old when doctors at a family planning clinic recommended sterilization.

“I did not refuse because this was the clinic where I would get my HIV medication. The health worker also knew that I was a sex worker and didn’t have a permanent partner,” Katrina says.

“At first I thought it was okay, but there was a time when I got married to a man after one year, and he wanted a child that I could not give him. I had lied to him that I would one day give birth, but when he discovered the truth, he beat me and chased me from his home.”

When Allen goes to receive her antiretroviral treatment, she does not say she is a sex worker.

“I see no reason for telling them,” she says. “They are treating me very well, they care about me. I see no reason why I should open up about my job.”

Nakato says there is a gap in cultural and educational backgrounds that leads to misunderstandings between sex workers and health professionals. Health care workers may not understand why women would engage in sex work or they may have preconceived notions of how a sex worker looks or acts.

“They must know what we think, what we feel, why we do this work,” Nakato says. “When you do not involve us, we are alienated. We should work as a team, and not just be seen as sex workers.”

WONETHA refers sex workers to the Most at Risk Populations Initiative (MAPI), a clinic at Mulago hospital in Kampala that specifically addresses the health care needs of high-risk HIV populations like sex workers. The health workers there are trained to know what types of questions to ask.

“They do not ask you to bring your partner there,” Nakato says. “The person handling sex workers knows not to ask for that, or for the number of partners the woman has had, because a sex worker may not know.”

In addition to the clinics it holds at Mulago each Friday, MAPI also visits sex workers in their own communities to test and treat women for HIV. They work with local women who help with engagement and distribution.

Betty**, a 45-year-old single mother of four, is in charge of dispensing condoms when MAPI visits her brothel in Kampala’s Kisenyi slum.

The entrance to the brothel where Betty works is in a narrow alley in Kisenyi slum. (Victor Grössling | The Media School).

Betty, a 45-year-old sex worker, sits in her stall in Kisenyi slum. She has been working for the last 15 years to put her four children through school. Betty hides her face because her kids don’t know about her work. (Victor Grössling | The Media School).

She says she is tested by MAPI every three months for HIV and remains negative after 15 years of sex work. Like Allen, she insists on using condoms with her customers.

“I will fight the men who do not want to use condoms,” she says. “I chase them out.”

Betty says most of the 80 women in the brothel prefer to use condoms. Many of the women who work with her have children and do not want to get sick or spread the virus. Betty cannot afford another child. She engages in sex work to pay for her current children’s education.

Her oldest child studies medicine at Makerere University in Kampala and she hopes to retire under his care once he graduates. If men become aggressive when Betty rejects them, she uses a stick to cane them from a distance.

Still, she says men often offer extra money for unprotected sex, and many women accept.

Dorothy Namutamba, Programmes Manager at ICWEA, says many efforts to distribute condoms are unsuccessful because sex workers are so economically dependent on men.

“Without ending the dependence, women lack the power to negotiate safe sex,” Namutamba says.

Nakato says sex workers need a program that combines condom distribution and negotiation skills workshops. According to UNAIDS Uganda, 21,718 sex workers were reached by Most At Risk Population services between October 2015 and March 2016, though much of the outreach programs focused exclusively on condom distribution and testing and treatment of HIV. Nearly all the programs were based in Kampala.

WONETHA does offer skills classes to sex workers so they are empowered in their negotiations. Allen credits her experience at WONETHA with her ability to reject unprotected sex.

“Before WONETHA, I couldn’t even speak about my job or my status anywhere,” she says. “But since I have inform
ation I am more comfortable.”

Allen was 18 years old when she began engaging in sex work. She worked at a bar where she would serve customers who used her body without paying. When she discovered the opportunity to make more money through sex work, she found a street where women operated and asked them about their business. They gave her information about their job and Allen chose to join them.

Eventually, Allen fell ill and could not work every day. Her friends decided to take her to Mulago Hospital, where she was diagnosed as HIV positive. She started antiretroviral therapy that day and now has an undetectable viral load.

“I am good in timing my medication very well,” Allen says. “So I’m fine. I’m just fine.”

Allen took classes through the Functional Adult Literacy program at WONETHA to learn English, and was hired from that program to become a peer educator. She went through three months of training on sexual and reproductive health and learned about self-esteem and confidence. She now works as a paralegal for WONETHA as a result of the certifications she earned in their classes.

“Being positive is not the end of the world,” Allen says. “We are all equal in the end.”

[*Katrina is an alias used by ICWEA to conceal the identity of the woman quoted in their 2015 report, “Violation of Sexual and Reproductive Health Rights Of Women Living with HIV in Clinical and Community Settings in Uganda.”] [** Betty is not her real name. Her identity is being concealed so she can avoid discrimination and harassment.]