Macklean Kyomya

Macklean Kyomya was born in 1983, the first of her mother’s seven children. Her father was polygamous and, though she remembers him as always hustling, he struggled to provide for all of his families.

At some point of time, we could not afford even the basics, like a matchbox.

Somehow she managed to start high school in the capital, Kampala, 130 miles from her family in Masindi. They had selected the school because it seemed like she would have more opportunities in Kampala after she graduated. Then her family’s money ran out. Kyomya found a sponsor to support her through the end of her studies. But his money was stolen. That precipitated several desperate weeks in search of a job. She applied at gas stations and to be a cleaner, but they all turned her down.

The issue was how do I survive? How do I make money? I can’t go back to the village. I remember at night I called one of the girls, she was called Sylvia, and I told her, Sylvia, I always see you going out in the evening. Where do you go to? They had their own circle. And they would go to the club, they would go to the streets. But nobody knew.

They took her to a club called Panther.

I was very scared, very naïve, still very tiny. I’m not even certain what I’m getting into. But determined because I have to survive. They started giving me tips: You find a man who’s ready to dance with you. Take boys. Give them company for pay.

Kyomya was soon a regular at Panther, protected by a manager the women called Big Punisher. That hardly made the work less frightening. But Kyomya kept returning because she could find no other way to save money to go back to school.

At some point, on an otherwise routine evening, Kyomya and her friends were approached by a woman from an organization called Lady Mermaid. She wanted to talk to them about HIV.

None of us wanted to listen, but for some reason, I was seated on a veranda, and I had nothing to do, so I kept listening.

A few nights later, Kyomya and her friends were at a club when a man started buying them booze. They drank it, and before he could request anything in return, they left the club and started running back to their hostel. One of her friends fell behind.

She was tiny, but she wanted to look like a model. So she would wear these shoes that were like crutches. But that meant she couldn’t run. She was beaten by this guy. They raped her in front of my eyes. It was very painful. Unfortunately, she got pregnant and she was hurt. That’s when I remember that I need to call this woman from Lady Mermaid.

That was the start of Kyomya’s activism. She spent years with Lady Mermaid and then went on to help build several different organizations to provide support for sex workers. Finally, she launched her own – Alliance of Women Advocating for Change – in 2015.

The organization has grown dramatically over the 10 years since. It has a drop-in center in Kampala that provides nine thousand people people with HIV treatment. They also have branches in other parts of the country and count at least 32,000 clients. They have funding to screen for cervical cancer and to provide mental health support. They also spend a lot of time helping women who have been beaten, raped or experienced other forms of violence. But preventing and treating HIV is at the heart of all of their work.

AWAC received its first grant from the President’s Emergency Plan for AIDS Relief in 2020. Kyomya said it was that money that helped them to expand and to professionalize.

We know that PEPFAR money has saved a thousand, not even a thousand, a million communities of our own key populations¹. It has empowered us to speak out, to engage in professional dialogues. If you come to do an audit to an organization that has been implementing, for example, PEPFAR funding, you find that we have our records, we have staff, we are complying with the policies of the country.

And every [key population] organization who is bringing service delivery, you ask this question, they will tell you the same. Many of us, we really benefit.

For marginalized communities, for the people that are at risk, we have survived on American support, American aid, to be honest with you. They will tell you, if it wasn’t for the American government, I wouldn’t be alive today. I wouldn’t have seen my children in school.

I’m speaking to her two weeks after President Donald Trump issued an order halting all work performed with PEPFAR money until the U.S. government can complete a 90-day review of its foreign aid spending.

We got this communication. I think it was last week, but one. You know, English is funny. For some of us, English is not our first language. So we didn’t understand the weight, the magnitude of the stop-work order. We are calling it the Trump stop-work order now.

We didn’t understand what that meant, but what we saw immediately was [the Infectious Diseases Institute] ²writing that all activities should be put on hold. It meant activities of outreaches, door-to-door distribution of commodities, condoms, self-testing, these refills of [anti-retroviral drugs] and [pre-exposure prophylaxis]. Walk ins who wanted to do their tests or counseling. Everything had to stop immediately.

All this was a confusion for us. Why? Because it was a bit hard and tricky for us to kind of breathe or take in. There wasn’t any warning that the stop-work order has been signed. Maybe tell all your clients or let them come and pick their medication for this period of time, maybe three months, so that they’re able to cope.

When all this happened, even at the government facilities that we work with, all of them immediately stopped. People disappeared. Some girls would go for a refill, they were told to sort it themselves. There are no staff. Or come back tomorrow.

A second letter arrived just days later.

So we got the first [letter] stopping us from doing anything. The second one was terminating the contract between us and the implementing partner. No more contract between us. No more binding agreement.

That was the end of the hope we had. It was no more. We are asking ourselves, How do we proceed with this? Here we are, they are saying the contract is no more, but even before the [90-day] evaluation is actually completed. So how do we deal with it?

[The implementing partner] was telling us, whoever continues to do any work, it is voluntary. It’s on your own risk. Even if a client walks in, do not give out any medication. Do not give out any commodity.

We have many clients who started walking in. As we were still trying to accept that reality, we still had some stock for ARVs and PrEP. They’re coming for their refill. When we got terminated, if you were here within our database, we are giving.

If we do not, then they will get expired. We still have PrEP. ART is finished. Right now, as we speak, services are not there. Those who are on ARVs, those who are coming from far, they are not all on ARVs. Some people are still struggling. Others are being told to share with a colleague. That was a taboo. You’re not allowed to share your treatment. Right now, it’s the order of the day. People are actually sharing the ARVs. People are actually sharing their PrEP.

We can’t imagine starting this journey and that someone is surviving on drugs. Then all of a sudden, their life ends because nobody can actually be able to provide this treatment or care.

At this point, she breaks down in tears. 

We do not know how long this is going to take. We don’t know what is happening. Nobody is telling you. Maybe this is the future. But we know that for the key populations, we are the target. We are not very sure whether it’s an intended mission to sweep us away. I mean, because we’ve had the waiver, but what was approved does not include any key populations’ priorities or needs.

I ask her about the arguments coming from Washington, that there is no reason the United States should be responsible for so much of the HIV response in countries like Uganda.

I know where they’re coming from on the issue of government taking responsibility, holding our government accountable, which we really love. And I must say that we’ve been on the front line for pushing for that agenda. We see government taking up ownership. But we thought this was going to be a very planned journey both with us, the communities, but also with our government as they transition.

Trust me, we knew that time was coming. And when you visit many of our organizations, especially for the key populations, like when you look at the past five years and the current approach that we’ve been using, you would see that integration of resilience and sustainability has been part and parcel. Integration of HIV, sexual and reproductive health, economic empowerment, mental health has been really prioritized. But this immediate stop-work order has been a huge blow for us. And at some point, we are not sure what we did to Trump.

In the immediate wake of the U.S. order, the Ugandan Ministry of Health has decided to close the drop-in centers, like the one AWAC runs in Kampala. Instead, officials want the outpatient facilities at government health centers and hospitals to provide all HIV services.

The Ministry of Health is saying such spaces are no longer valid. The government cannot absorb all of the drop-in centers. So they are looking at actually closing them. Closing them up so that they are no more.

But remember these are safe spaces. I’m talking about the nine thousand-plus numbers which directly we work on. What we have done is to mobilize, to bring back people to care, to ensure that people stay in care, to ensure that when someone is actually positive living, they do not have to disappear because there was no one to talk to them. Someone will keep coming back.

Why in the first place had we separated to have specific services or service points at the facility, you understand? Because the reasons why people could not go at that time, they have not changed. They have not changed. And they are going to continue. So literally people will not go. And for me, the worst thing is, once we neglect that, no one is safe.

No one is safe, because key populations, sex workers, men who have sex with men, transgender persons, they are our children, they are our relatives, they are people who integrate with the entire population. We have gone back to zero steps. And if nothing changes, we are going to guess there are so many numbers of people that are going to pass on. To die.

So that’s why we feel that it’s an intentional deliberation of actually sweeping away key populations. It’s painful to say this, but this is what we are seeing.