Flavia Kyomukama

Flavia Kyomukama signed the contract to become executive director of the National Forum of People Living with HIV/AIDS Networks Uganda in December 2024. Any campaign to improve the lives of people living with HIV runs through NAFOPHANU, which means that Kyomukama was stepping into a role as one of Uganda’s most important activists.

She could not have anticipated the crisis that would erupt just weeks into her leadership, though. I’m meeting with her on February 12, just over two weeks after President Donald Trump issued an order pausing all HIV programs funded by the American government. In Uganda, U.S. funding supports nearly every aspect of the HIV response. And so Kyomukama is already mobilizing for the worst.

We have actually started engaging in palliative care associations to be on standby. We might need the morphine, we might need the counseling, we might need the end-of-life discussions.

As people with HIV, it’s really an emergency. Anything that attacks our treatment, our way of work is actually an attack on our lives, but also an attack on our livelihoods and our wellbeing and our sense of belonging.

It has never happened before. It’s unprecedented. Even COVID, by the way, we were given two weeks to prepare. To see how we get our treatment. To see how we work. But this one is different. People don’t have salary, people don’t have allowances, people don’t have clinics to go to.

We knew that the U.S. would stop. Or donors would stop at one time. But we didn’t think that they would come one day and say, Today. And we think it is really not human for anyone to do that to a whole population of about 30 million people who are accessing life-saving treatment.

Among her immediate tasks is to tap NAFOPHANU’s network and begin documenting the impact of the suspended services. Already she is hearing reports that mothers who are HIV-positive are being denied access to nevirapine. The drug – given to both the mother and the newborn – is crucial to help prevent the transmission of the virus during birth or while breastfeeding.

We have cases of people saying when they went to deliver, to get nevirapine, and they were charged 10,000 [Ugandan shillings], which is about two dollars. Others have been charged five dollars. So it’s going to be very expensive to access health. It is illegal. It’s not supposed to be charged, especially in public health facilities.

We are worried that there will be a spike in mother-to-child transmission because a number of women may not be able to afford that amount of money to get nevirapine.

I am meeting Kyomukama at a café on the grounds of the National Theatre in the heart of downtown Kampala. The Ugandan Parliament tower looms over us from across the street. She has agreed to meet me here early in the morning because she plans to lobby some parliamentarians after we finish.

She is doing all of this – the organizing, the advocacy, the interviews – without pay. Like almost any organization involved in the HIV response, NAFOPHANU was also supported by the U.S. government. Their funding is suspended, so she stopped paying herself on January 28.

Still, she knows she has some influence. And she wants to use it to convince her representatives to start putting pressure on Ministry of Health officials. From her perspective, they don’t seem to understand just how calamitous the situation is.

The government recently raised the circular that all stand-alone HIV clinics are going to be integrated¹. It is a good procedure. It’s a good process. It’s a good spirit. But we can’t do it now because the government is also constrained by resources.

So the integration is going to harm very many. We are hoping that while the integration comes, the community systems are not disrupted because we already have those people, those community health workers, who have been supporting from the homes to the facilities. From the homes to ensure people can access treatment, they are referred. Those who need counseling, they are given basic tips.

There is a lot of frenzy around here. People are saying, How are we going to survive? Especially now we are going to be taken to the main facilities. How do we stand there? Some of the people are not disclosed to their partners, to their families. So how do people stand there in the queue to wait for ARVs?

And we know that our public facilities, they don’t have space. The workers, they have not been trained. The majority of them have not been trained on how to manage HIV cases.

If you are looking at those who have been served by the [drop-in centers]², by the safe spaces, by the shelters, those are the most abused communities. DICs, shelters, safe spaces, user-friendly corners may not be easy to phase out, because these are community structures. These are structures that have been set up by communities to protect their own and also to provide friendly and more inclusive services so people feel free.

So even when the government phases out these user-friendly corners, they may not necessarily phase out because these are within communities. The only thing that will phase out is the funding to them.

Instead of an integration plan, Kyomukama is pushing for the government to commit to covering the lost American funding – at least for the 90 days that Trump says he will need to evaluate U.S. global aid spending.

We are only saying now, can we have a catch-up plan for the 90 days? Parliament will receive requests from line ministries. Central Hill³ has not shown us that they require any support to beef up whatever is going on.

So Parliament cannot wake up and say, give us a supplementary for something that they have not been requested. This is the third week [since the initial stop-work order from the U.S. government]. Nineteen days to be exact.

We are still going to have to count on the Minister of Health for action. This is an emergency. It’s a crisis. Where is the Office of the Prime Minister? They are supposed to manage the disasters and emergencies.

Right now it is 19 days. We have not seen action that shows that this is a crisis and taken as a crisis and managed as a crisis.

It’s the moment actually to even push [Ugandan President Yoweri Museveni] further because the elections are coming, and we need to let him know that sick people don’t vote. That he needs to give us treatment to be able to stand upright and go and vote for him.

The government is not her only target. She has spent the past weeks in regular meetings with the other funders that Uganda has also relied on to support its HIV response, including the Global Fund to Fight AIDS, Tuberculosis and Malaria. She is now convinced they will not offer any relief.

I sit on the Country Coordinating Mechanism⁴ of the Global Fund board in Uganda. Yesterday we were called to one of the committees. And it was open to the public and we presented our statement. But they have been also quiet, the Global Fund. I’d say they are not going to talk. They didn’t say anything.

We have asked for an extraordinary board meeting, which I think will come. Because we want to hear what the Global Fund is saying. The country team was here that week over the freeze. They kept quiet and went back to Geneva. They didn’t say anything. They were not allowed to speak. So we are continuing to push to hear people speak.

Eventually, Kyomukama arrives at the cause of this chaos and the main source of her frustration: President Trump. Her tone, which has been professional and straightforward for the better part of an hour, now turns to bitter sarcasm.

America has become great again. You have shown us that they are great and we do understand. If I had an opportunity to kneel before Trump, to meet him and kneel down, I would. For 22 years⁵, we have been happy knowing that we have a life. We can live until until something else kills us.

To the American taxpayer, what I would say is thank you very much for keeping us alive. I was diagnosed with HIV in 1994. That’s about 31 years ago. And for the last 22 years, I’ve been taking a pill, which has kept me alive.

She reverses course. She wants Trump’s supporters to understand the President’s Emergency Plan for AIDS Relief has not been purely altruistic. That Ugandans played a role in their own salvation.

We have also been part of the guinea pigs who are part of the research. We have also supported the American pharma, because they test on us. So that is being used globally. Our blood flew to America. They got a product that is serving the world and I believe even some Americans could be taking.

We offered ourselves so that the American pharma can thrive. The American researchers can get accolades. We are treated, but the Americans are getting accolades. They are known for the trials and innovations. What President Trump has done is a breach of this relationship.