Shakirah Namwanje

There is much about the Trump administration’s abrupt suspension of global HIV funding that feels capricious and cruel to Shakirah Namwanje.

Just waking up one day and everything has shut down has been devastating mentally.

But it’s the cuts to HIV prevention services that have left her baffled. Aside from programs to help mothers prevent the transmission of HIV to their newborns, Washington has suspended all prevention funding.

I am a person living with HIV and I have a passion for prevention because I never got the chance to protect myself. Where we are now, treatment has improved, there’s a lot that has improved, but really living with HIV alone is not easy. With the stigma that comes with it. With the daily medication that you have to take. It’s generally not easy. And also treatment is expensive.

Prevention being that it’s not lifelong. It’s usually for the periods when people are at risk. They can take it. They can stop taking it. It’s relatively not as costly. But also, it’s to give people the chance. We have the prevention tools. We have moved really in science. And for us to close the gap or to end AIDS in general, we really have to make sure that we are stopping the infections that are happening.

And now there are more prevention tools then ever before. There are condoms and oral pre-exposure prophylaxis medicine, which is widely available in Uganda. But programs were also just beginning to introduce revolutionary new prevention methods to the country. These include a vaginal ring that, once inserted, can be left in place for a month to help prevent HIV transmission and an injectable form of PrEP that only needs to be given once every two months to stop infection.

Those initiatives were largely funded by the United States and have now all but disappeared. This has devastated the communities of girls and young women that Namwanje works with as the director of ACTS101 Uganda.

We bridge the gap between the research and the community and de-medicalize science. To say how can we present HIV prevention to young people as self-care? How do we engage communities right from the development stage, the introduction stage, such that they are informed? They are able to demand for the products. They are able to benefit from the products. They are able even communicate and say this is what we want for ourselves.

The betrayal is deeper than just losing the promised access to these tools.

[Ugandan] women participated in these studies. They’ve been part of the process. They knew we’re doing this, we’re sacrificing our bodies to get the evidence. So we got the evidence. And even when we got the evidence, we said, We are moving to roll out such that communities can start now accessing their products.

And right now we are going back to say, Oh, we cannot give you products. Or we don’t have funding for these products. It’s really, really unfair.

Women across Uganda were actually enrolled in implementation studies, the final stage before the ring and the injectable would be widely available. The participants were working with researchers to figure out how best to introduce the products and talk about them so that people would actually use them. Those studies have now been halted, even though there are still rings and injections on hand for the abandoned research.

We have a request for the [injections] to be donated to government, since it was donated by Viiv¹, not the [U.S. President’s Emergency Plan for AIDS Relief]². But then we have the [rings] that were actually donated by PEPFAR. So those are still in stock and seated. The team have to seek approval from PEPFAR, which is currently unavailable, to get that approval for it to be donated. And if we can’t get the approval, there is likeliness for the product to be destroyed.

That would be a stunningly cruel blow, even for a U.S. administration that has persistently demonstrated its lack of concern for the people it was previously assisting.

Communities have been excited. They have been waiting for these products. And somehow, I don’t know how or where or what, we need to put our heads together to make sure that they get these products. People have preferences. People have things that they want and they don’t want. And those preferences and choices change over time. So we should be able to provide a range or a basket of options such that they can be able to choose.

Our government really cannot support the prevention gap that we have. That is the reality. I don’t know what they’re going to tell us, but the reality that we know is they are not able to cover that gap. Women, we carry the burden. So we have the fear that it’s really going to fall onto us to see that the infections are increasing among adults and girls and young women just like they have been. And that is not fair.