Opok Martin Cankara

When Opok Martin Cankara joined The AIDS Support Organisation in Gulu 20 years ago, the community-run group only had only enough life-saving treatment for 30 clients. The team decided who would receive the medicine based on how sick a patient was.

For those who were ill, but not quite ill enough, the TASO team could only hope that more treatment would become available before their health deteriorated further.

It was not a good experience working with an HIV setting. You see somebody in a clinic today. After one week, you will not see the patient. He’s already dead.

Over the years, more anti-retroviral treatment slowly became available. But the need still outpaced supply. The TASO clinic is in center of Gulu, which is the hub of northern Uganda. It draws clients from across a region with one of the highest rates of HIV in the country.

That meant the clinic was still unable to provide treatment to all the clients who needed it.

We moved from 30 to 300. From 300 to 900. And then a new guideline was brought in.

In 2016, the Ugandan government announced a policy of “test and treat.” Any client who received a positive HIV diagnosis could immediately start on drugs. It didn’t matter how sick they were.

That is when we enrolled massively.

At TASO Gulu, the number of clients living with HIV has ballooned to nine thousand.

And up to today, we have never run out of ARVs.

In a matter of months, that may no longer be true. Nearly all of TASO Gulu’s funding was eliminated in the sweeping cuts President Donald Trump’s administration enacted on foreign aid. That includes the funding TASO relied on to deliver ARVs to those nine thousand people.

The ARVs may not be enough now, and the clients will not receive the ARVs. That is the fear. We are in the frontline. We are scared, but we feel we should not show our scared to the client. They will become more scared than us.

The stock we have is the one we received in January. We are not very sure whether we are going to receive another stock this week or next week. What we have can take us for another three months. But we don’t have enough, especially the pediatric ARVs.

This is deeply frustrating to Cankara, who has spent 20 years developing systems to make it easier for people to get tested for HIV and stick with the daily treatment. As he has discovered, the more accessible those services are, the more likely it is that people will use them.

Those who are at risk, they can shy away to come openly for testing. But when you carry the massive HIV testing [to them], they can also come in. Though you can test 500 and you get only two positive, it would be a great work done.

As the clinical linkage officer, he also spearheads the process of delivering treatment to 80 different locations every six months. Most of the time, that means driving the van himself to remote communities hours outside of Gulu.

We take the drug from the facility. We go and meet at that central point where the clients come together, and they pick their drugs.

But now those services are collapsing. TASO Gulu does not even have the money to track down clients who do not pick up their treatment.

The only follow up we are doing at the moment is through phone call. If you miss your appointment, we just call you to come. But physical follow up, we cannot do it now.

In the long run, the impact will be the emergence of new infections, because the system is now broken.

It is not until the end of our interview that he mentions he is also lost his job because of the cuts. In fact, TASO Gulu was forced to lay off most of its staff. This was not immediately apparent because, even without a salary, Cankara and the rest of the team are still showing up every day, trying to salvage the services that they can.

They meet with clients who come to the clinic, and Cankara continues to deliver the remaining ARVs to communities when he has enough money to fuel a vehicle.

None of the TASO staff have ever gone away. We are still volunteering. And we still want to support the clients who are attached to us. These nine thousand clients, we cannot just leave them just like that.