Beatrice N., Enid K., Jowerica B. & Racheal M.

The brothel is not easy to find. You pass a church, turn behind some warehouses redolent with the smell of dried fish and then climb four flights of metal stairs attached somewhat precariously to the side of a building.

When we finally arrive at the top floor, Melb Simiyu of the Alliance of Women Advocating for Change ushers me in front of her. She is worried the sex workers will be pushy, even aggressive, and wants to guard me from them. But the women barely register our small party, which also includes another outreach worker from AWAC. 

There are dozens of women lounging on pieces of cardboard in what was once a large, airy hall. It has been subdivided into makeshift rooms with curtains in place of doors. The rooms rent for an hour, a day, a week; whatever the sex worker’s budget allows.

We make our way to the back, toward the Goodlife Pub. A sign painted next to the bar demands payment only in cash. There are also posters warning against the spread of mpox. Others advertise an Easter holiday trip to nearby Jinja, a city made famous as the source of the Nile River.

The back wall is all tinted windows overlooking a bus depot. We watch the endless flow of people and vehicles during the short wait for Beatrice N. to arrive. She is wearing a dress of pink and red flowers set against a black background and, rather incongruously, a knit cap despite Kampala’s late March heat.

Beatrice first encountered AWAC in 2015 during an impromptu protest a group of sex workers launched against some local health facilities. They were angry at being turned away when they went to get basic services. AWAC’s Executive Director Macklean Kyomya somehow learned of the conflict and offered to liaise with the police on behalf of the sex workers.

I didn’t know anything about HIV before that. I wasn’t taking any precautions. Condoms were there, but we were really not taking it seriously. When she came with the awareness, we also tested and most of us had HIV.

Beatrice started anti-retroviral treatment in 2018. By then her colleagues had already voted to make her a peer leader. A modestly paid position through AWAC, it requires her to encourage people to get tested or take advantage of prevention services.

I was a female sex worker. I had the experience, and I knew how to handle female sex workers well.

I collect them in smaller groups – 10, 15, 20 – then provide the information to them. If they agree, then I call the team of health workers to do the HIV testing and other health services. I also do door-to-door as I wait for the clients. Some few have some information, but they need emphasis. There are others whom you reach, and they don’t have any information.

I have a notebook. Whoever I take for initiation, I record them in the notebook. Even the date when this person is supposed to come back for a refill. Then I keep on reminding them.

Among us, the female sex workers, HIV had reduced compared to that time.

Then came the order from U.S. President Donald Trump administration halting most HIV services. This was particularly disruptive to sex workers, who had come to rely on drop-in centers created specifically for them. The centers offered an escape from the harassment they might face at government-run facilities. They were almost exclusively funded with U.S. money.

We heard Trump had removed aid from Africa, especially the medication. The ARVs. So female sex workers in the hot spot were stressed. Some of them, especially those ones on ART, most of them started taking alcohol to death. To the highest. They became drunk. They lost hope.

They had pressure which they didn’t have before, so they went back to the risky behaviors. Not using condoms. They didn’t care who they go with just because they had lost all hope. After all, ARVs were going to be removed, so they were dying soon. Even up until now they are still scared. They don’t know what is going to happen.

Those ones who were supposed to go for the refills of ARVs, because they had the wrong information, they didn’t go. And they didn’t communicate.

We also got many calls from clients who were disturbed, inquiring what they were going to do next.

During our conversation, Beatrice mentions that several of the sex workers she supports ran out of ARVs in the days immediately after the Trump administration suspended U.S. aid. They refused to venture to government facilities to look for refills.

After officials authorized U.S.-funded treatment services to resume in early February, she sent messages to her clients that ARVs were becoming easier to find. That they needed to restart their treatment before it was too late. Many did. Others are still lost.

I ask Beatrice if any of the women are nearby and might be willing to meet with me. She leaves to make some calls. Minutes later, Enid K. is bounding down the hallway, grinning broadly to reveal two blackened front teeth. She’s coming from running errands and has on a brown tank top, her braids cinched by a lacy turquoise cloth flower that she is pleased to have admired.

Still grinning, she tells me she resumed treatment just days before.

When the stop-work order came, that is the time when I was supposed to go for my refills. I didn’t get them. They informed us they had closed the facility. I was very scared of what is going to happen to me. Then I ran out of ARVs. I started getting some effects.

Enid gestures to her knees, elbows and knuckles, where the skin is noticeably darker than the rest of her body. She turns in her seat and lifts up her skirt to reveal more dark blotches on her calves.

They are like rashes. I think this is the effect of not taking drugs. They are very painful, but the pain is reducing now that I am taking the medication.

This is the longest I have gone without ARVs. It was for two months, from January. I was worried. I even started taking alcohol. I was thinking that anytime I am going to die. It was that life of hopelessness. Then the peer leader called me and informed me the drugs are now there.

I have not yet gotten used to the medication. Because of that period I spent without taking drugs, I am getting worried. I feel like fainting. I think it could be a result of not taking the drugs. I worry because I am a mother who has children I have to take care of.

The last time I went to pick my drugs, the health workers told us we have to take care of the medicine and take it very well. Even the health workers don’t know what is going to happen next.

Jowerica B. worries more about the effects she does not see. A peer educator like Beatrice, Jowerica understands how valuable she is to her community.

I talk well with a person. This person becomes a friend. I escort this person to a facility. This person talks to a health worker and in most cases, they are tested. And when the person is HIV-positive, I follow up. I continue to provide counseling, because I have the skills.

The people have much trust in me, even more than the health workers at the facility, because I am the one who reached them first and escorted them to the facility. I support them to get their drugs from the facility. I have a big number of clients.

She travels to four different facilities each week to collect medicine for those clients.

Then I was totally stopped. I could not do anything because even the health workers at the facility communicated to us not to go there. Then the clients used to call me, requesting me to help them pick their drugs from the facilities. I had to tell them to go and pick for themselves.

If their preferred facilities were closed, she referred them to government-run clinics.

Most of them didn’t get the drugs.

She worries that they have lost faith in her. That they do not understand there was nothing she could do. It doesn’t help that since services resumed, there have also been changes at the health facilities. Clinicians that the women had grown used to have been shifted to other departments or decided they didn’t want to risk additional instability and quit.

They are seeing new faces. They’re not used to them yet. Some of them are stigmatizing, so it’s also affecting them somehow.

It took only a few days to destabilize a system she has been helping to construct for years. Even if some order returns, Racheal M. predicts the fallout will last for months. The grandmother wears an AWAC-branded vest in khaki, which underscores the no-nonsense approach she brings to her work as a peer educator.

Our viral load, especially the ones who are taking ARVs, is going to be affected. It will not suppress because there are no ARVs. And these people are working on a daily basis. So the chances of reinfection automatically is going to increase because they will not be taking their ARVs.

She also points out that the sex workers who are HIV-negative can’t access condoms or post-exposure prophylaxis, which can mitigate the risk of infection.

Of course HIV infections are going to increase. We need the aid to continue, such that people continue getting their medication and things move the way they have been moving, because they have been okay, at least.