Joweria Kasiir

Joweria Kasiir is almost single-handedly keeping the HIV services at Kamuli General Hospital afloat.

When I meet her, she is bargaining with a young mother holding a newborn. The woman was diagnosed with HIV before the baby was born, but for reasons Kasiir is trying to tease out of her, has not started treatment and did not get enrolled in a program to help prevent her from infecting her child during birth. The woman is now afraid to get the baby tested for HIV, even as she continues to breastfeed him, which can also transmit the virus.

According to the hospital protocol, this woman should be consulting with the pediatrics department. But they do not want to take responsibility if it turns out the baby is infected. They have passed her off to Kasiir, who is now using every strategy she can think of to get the woman to get the baby tested and, if he’s positive, to sign them both up for treatment immediately.

The woman finally gets up to leave. It’s not clear what she will do next. Kasiir, a bullishly determined woman, is frustrated.

I want to help her get back to those facilities. But this is somebody who is not serious. She may not go back.

There is still a waiting room full of patients to see, though, so Kasiir must move on. She tucks the woman’s file away on her desk so that she’ll remember to follow up with her later.

More than three thousand people living with HIV received treatment at the hospital in eastern Uganda before the U.S. aid cuts. They visited a specialized clinic staffed by Kasiir, who runs the office, and another government health worker. The colleague suffers from chronic pain, though, and is rarely at the clinic. It also featured a fleet of peer counselors and community outreach workers, all paid through the U.S. President’s Emergency Plan for AIDS Relief.

Few of them are around anymore. Some PEPFAR funding has been restored. But there has been a confusion of messages from Washington canceling and then reinstating support over several months since the initial January order halting all U.S. aid. That has left the U.S.-funded staff uncertain if they are allowed to work.

Organizations which are supporting us, they have been on an off. Like now here, we’ve been working with the [Makerere University Joint AIDS Program]¹. MJAP is the organization supporting us, like they deployed some clinicians, counselors. They give some stipend to the linkages. [The linkages] are expert clients who support us in the clinic. Because we need them. They are doing peer-to-peer counseling, peer-to-peer support. They are doing given a lot, like supporting us in these other ways.

Because me, being a health worker, I may be here prescribing, but I cannot write an appointment. I cannot handwrite registers. We have data clerks, but those are an online system. They work on that. They cannot handwrite at the same time, do the soft copy work. Because here, there is a lot of work. We need support from our expert clients. Ever since HIV clinics started, because it started with the government, but the government cannot stand alone. They needed the support from organizations.

That is almost all gone. Now all Kasiir can do is open the clinic doors at 8:30 each morning and see patients until the waiting room empties. The U.S. eliminated all of the funding for HIV prevention services or to do community outreach. Not enough people are showing up for their treatment and drug supplies are dwindling. She knows a crisis is looming.

We still have drugs. As long as drugs are there, for us we are there as health workers. Some other facilities stopped working even when the stock is there. But now for me, I continue services as long as the requirements are there.

But we are not doing anything like outreach, because we have no support. There’s a big impact, because most clients are got from outreaches. Like even when clients are lost. There are those who need to be followed up when they miss their appointment. We need to follow them up.

You find that we still have some airtime to call. First, we call our people to remind them about appointments. Even at the end of the day, those who have missed, we call them so that they can come. Now it is rainy season, people will be concentrating in the garden, but we talk to them. We are telling them we are struggling, so you people keep your appointment.

The other challenge has been on viral load². At times they say there is no transport to take to [the Central Public Health Laboratories]³. Now, this time, they are telling us there are no forms.

Overwhelmed by the amount of work, Kasiir recently called some of the expert clients for a meeting.

We talked to them to see if they can continue supporting us. If they can support us for the few hours. They need to eat. They need to do some other work to support themselves. But those who are willing to support, if they accept, they can be around to support us.

She has no money to pay them, but she is desperate for their help to stave off a bigger emergency. Kasiir has actually been instructed by the Ministry of Health to close her specialized HIV clinic and fold the services into the general outpatient unit at the hospital. She fears that will mean losing even more clients. People are still afraid of the stigma that will attach to them if a waiting room-full of people learns they are HIV-positive.

People are not comfortable going to OPD. Actually, when they come, we have some meetings with them to ask if at all they can feel comfortable like that. Actually, we’ve never gotten anybody appreciating it.

Some people just say, For us, we shall just die. We can’t mix with those people. And the health workers, themselves, have their attitude. When a client goes to OPD for something, the moment [the health worker] get to know that this person is positive, they say you go the other side. Your health workers are there. Your doctors are the other side.

That one is not good. People will stay home.

For us, we are maintaining, we are trying, until when they come and force us to take people to OPD. We have no mandate to refuse, because this is a command or a directive from the ministry.

As they tell us to integrate, they should come and first tell us how we should integrate. And we get to know how things are going to move forward. How we should guide the clients as they come. How is it going to be? Not just waking up one night and say, Now you people go to OPD. People will be stranded, because things can’t work the same, like how things have been working here. And also it needs time to transition these clients, you transition them slowly. So it is a process. You can’t just wake up one night and say, All people need to be prepared. HIV is something, not easy.

Of course, the situation is still bad, because there is nothing like change we are seeing. But for us, we are just stubbornly moving. I’m carrying on my department.