Bernard Etukoit

Bernard Etukoit understood that The AIDS Service Organisation could not falter.

We are the oldest HIV civil society organization in the country. And one of the very, very early ones globally. We have that commitment. We have that unwritten contract with people who are HIV-positive.

For many Ugandans, TASO, which was formed in 1987, is synonymous with care for people living with HIV.

TASO has built on that early history. It now receives support from the U.S. government and others to help run 11 centers providing HIV services to 78,000 people. The organization also helps prop up government HIV services in Uganda that support an additional 200,000 people.

Though the organization was severely impacted by the U.S. global aid freeze announced by President Donald Trump’s administration just a few weeks before we meet, Etukoit knew he had to figure out how to keep as many of those programs running as possible.

If we had closed, even announcing that we had closed, it would cause a lot of panic. That would be an indication that it is all over. It is that bad.

We moved very fast to manage the fears in the short term. We communicated through our stakeholders that we are not closed. We are not closed. We are open.

But only with some significant sacrifices on the part of the staff.

We allowed our centers to open with a limited number of staff. We allowed them to work, to handle the provision of drugs, life-saving care. And because we have a small amount of money that we have raised locally, we have allocated a limited amount of money to enable the staff that are at the center to work.

Many are just volunteers. That aspect of volunteerism is inbuilt in our value system and the commitment to HIV-positive people is very big.

There are some services TASO has had to suspend, though, because it cannot afford to maintain them without support from Washington.

The waivers we receive¹ have a checklist directly at what areas to do, what areas not to do. Not all some components of prevention can be implemented, especially community-based. And the medical male circumcision².

Etukoit acknowledges the organization was taken largely by surprise by the Trump administration’s move.

We expected something but not to that scale. Not to that scale and not that quick. We expected if anything had to come up, it would be a gradual process.

And even though the TASO programs have continued to operate, he knows that has not mitigated the worry among Ugandans as other clinics shut down or reduce their services.  

There is fear and panic. It caused a stampede among people who are HIV-positive and, by implication, their families. Of course, we are communities and societies. Even those who are not yet infected, you fear that supposing it happens, I would have access to treatment and survive.

In the weeks since the announcement, he has been tracking how Washington’s actions have disrupted an HIV response that has taken decades to develop.

People devise means to survive. One of the observations beginning to peak is people themselves trying to rationalize their drugs. We have not pitched that from our system, but we have heard what is happening out there. Maybe hoping that if I miss two days, I still have stock for another time.

What we are also observing is the progressive increase in number of people coming to our facilities to test for HIV. We do think some of them may actually be people who already know their status and are receiving drugs elsewhere. But if they come and test with TASO, they will be initiated on treatment. The reality is they want a buffer for themselves. We think that is one of the reasons why people are showing up now for testing.

It could also be because other facilities are closed, so there is nowhere to test. Or it could also be people who have been fearing to test but think they could be HIV-positive. And if they are, this is the time to quickly come and have a test and maybe get some drugs before you completely have nothing available.

Even as he observes how people are adjusting in the short term, Etukoit is trying to prepare for what is still to come. That future is complicated by a U.S. administration that is inconsistent in its messages and by a Ugandan government that seems unwilling or unable to make up any funding shortfalls.

What I do postulate is the country will not run completely out of ARVs. There are 1.4 million who are on treatment. There will be some of them that will still continue having ARVs, because they can afford to pay for it. That is one. Two, the government of Uganda will be able to afford ARVs for some people. Some of the people.

But without the U.S. government support, whatever happens, there will be people who cannot consistently access anti-retroviral drugs. So the intermediate- to long-term impact will be, of course, people not having drugs. You have more sick people, because they are not accessing treatment.

He starts to speak haltingly.

Potentially, unless government channels resources, there is a likely collapse of the public health system. Because health system strengthening is part of the larger [HIV] program. The emergency treatment was gradually significantly transitioned to supporting the health system.

And it ranged from laboratory support, including human resources for health. Recruiting and paying. We’re supporting districts to recruit and even support paying staff. Refurbishing those laboratories, supplying the reagents, movement of samples.

So there is a knock-on effect on the health system itself. This funding supported directly and indirectly to keep the health system afloat.

But also, very critical, is dealing with the emerging epidemics. COVID-19, Ebola and then the other hemorrhagic fevers. So whenever those epidemics have come in, and they are quite frequent now, the civil society recipients of the U.S. government funding have responded very robustly to support the public health system. So there will be issues around managing, dealing with, epidemics because of that. The containment will not be as easy or as fast or as robust as it had been.

Despite everything he has just detailed, it turns out Etukoit is still an optimist. I ask him if it will still be possible to meet the commitment made by global leaders, including U.S. officials, to end AIDS as a public health threat by 2030.

When the resources are available, the interventions, new information and knowledge, new tools, it could. Let’s hope that this money comes soon.