Sarah K.

Flavia Kyomukama, the executive director of the National Forum of People Living with HIV/AIDS Networks Uganda, puts me in touch with Sarah K. Sarah has been calling Kyomukama several times a day, desperate for advice. Kyomukama thinks it is important that I understand why.

Sarah is a linkage case manager at the Mukono General Hospital. It is a fancy title that obscures what she really does, which is anything she can to help someone newly diagnosed with HIV.

I do everything. I do their counseling, talk to them, encourage them to talk to their peers. You see these people who have been having HIV for many years, you just get that courage.

I explain how to live positively, the way she’s supposed to eat, the way she’s supposed to live. How’s she supposed to treat the kids. To know to just test the kids and the husband.

When I meet her late on a Friday afternoon, it’s immediately apparent that she must be good at her job. She is warm, welcoming, reassuring. In the midst of a crowded hospital, she will focus on what you’re saying to the exclusion of anything else. She is also, it becomes clear, extraordinarily passionate about the work. It is borne out of her own experience being diagnosed with HIV more than a decade before.

The day you realize that you’re HIV-positive, you just think about death.

My first born was falling sick. He was a boy, one year and three months. I was pregnant. I think I was five months, around there. I didn’t know that I was HIV-positive. And then I was tested.

Her son was, as well. They both immediately started treatment, and when her daughter was born four months later, she did not have the virus.

My son is making 14. He’s taller than me. He’s bigger than me now. I’m proud of him.

In the quick action to save her son’s life, she understood the importance of helping the newly diagnosed to accept their status and to commit to treatment. It is now her mission.

She worked in specialized HIV clinic within the Mukono Hospital complex, set just off of the busy highway connecting Uganda’s capital, Kampala, to Jinja. They see a steady flow of patients, including people from either Kampala or Jinja who do not want to go to a clinic closer to home for fear they will be recognized. Mukono is the perfect refuge.

As many as 15 people would come every day to be counseled and tested for HIV.

Then there are the sex workers stationed nearby, who draw their clients from the truck drivers heading back and forth to the Kenyan port, Mombasa. The women have come to rely on the HIV treatment or prevention services that Sarah’s clinic offers.

The reason that Sarah has been frantically calling Kyomukama is that, in the aftermath of President Donald Trump’s order to halt all U.S. global health funding, people have stopped coming in for testing and for the treatment and prevention services. Rumors are circulating that without U.S. support, HIV services have been completely eliminated. On a recent day, only one person came for testing.

Now they are just scared, because they think very soon there will be no more. People are scared. On social media, everyone is saying there is no medicine, no medicine.

They are thinking, if I’m tested positive and then I don’t get drugs… Let me stay not knowing my status.

The reality is that while much has been paused, services do still exist if patients go to the outpatient ward of the main hospital at the front of the complex. The health workers there, paid by the Ugandan government, have taken over the treatment and prevention services that were offered at Sarah’s specialized clinic.

Because her clinic was funded by the U.S. government, the staff were told they had to shut down while the Trump administration conducted a 90-day foreign aid review.

Some of them, when they reach there, they find the building closed and they just go home. That’s the challenge we are facing. We are giving [services], but the challenge which is there is that it’s in a way that people are not used to.

Her clinic also had to suspend its efforts to reach out to the community, including campaigns to encourage people to come for testing. The Ugandan government-funded health workers don’t have the capacity to take over those tasks.

People used to go for outreaches and bring customers. They get tested. When these new clients come, we write down their sexual partners and sometimes we give calls¹. But now there are no more calls, because of what is going on.

It’s not just that they can’t get people in for testing. Without the community outreach, the counselors can’t get information out that services do still exist or to counter the rampant misinformation being spread about the current situation.

They’re saying [in the community] we’re going to give you dresses to identify you as HIV-positive. Others were saying that they’re going to give them tags to identify that this one is HIV-positive.

I get, like, 20 clients a day who call me, asking me, What’s going on? Are we going to have the medicine? Are we going to die? They’re just thinking about dying.

Her biggest concern is reserved for the couples where one member is HIV-positive and the other is uninfected. Her clinic took special care to monitor those couples, ensuring that the one who is HIV-positive was sticking to treatment and their virus remained undetectable. That means they cannot transmit HIV. At the same time, they offered prevention options, including daily pre-exposure prophylaxis pills, to the HIV-negative partners, so they would feel doubly protected against the virus.

They are getting challenges. They are scared. They are scared of HIV. Now they are separating with their partners. The negative is asking herself, himself, that in case there is no more [anti-retroviral treatment], how can I risk to go with this person?

Things were easy, but nowadays, things are going to be tough.

Sarah tells people to come to the outpatient center. She tells them that even though her contract has been suspended, she is still volunteering from the main hospital every day. She can help make sure their services are sustained. Still they don’t come.

[Other outpatient clients] can point at them, they think they are HIV-positive. They think maybe you are a womanizer, you are a sex worker, you go with many partners. That’s what the challenge is.

Sarah admits she doesn’t know what to do. Kyomukama has assured her that what she is doing now is critical: showing up every day at the outpatient center and helping where she can. But it doesn’t feel like enough, especially when she knows that so many people aren’t accessing the services they need.

I myself, I was scared. I spent like three days having sleepless nights asking myself, What’s next? But one thing, what encouraged me, I asked myself, When I’m down, who’s going to lift those ones who are down?