For Oliver L., getting access to cabotegravir was a godsend.
Oliver started taking an oral HIV prevention pill six years ago for two reasons. To begin with, she loves her boyfriend, but she does not trust him not to cheat on her and infect her with HIV. Also, she sometimes must do sex work in order to make money to survive. She wanted to protect both of them.
The oral prevention method, known as pre-exposure prophylaxis, is extremely effective, but only if you remember to take the pill nearly every day. Oliver remembered.
I’ve been swallowing that PrEP.
But the pills come in packaging that looks similar to the anti-retroviral drugs prescribed to people living with HIV. That became a problem for her.
Taking oral PrEP, my boyfriend, he started saying it’s ARVs. For me I’m pretending about [being HIV-negative].
She did not want him to know why she was taking PrEP, so she tried to explain it away as another medicine recommended by her doctor. But they still fought regularly about it.
Then last year, a friend told her about an implementation study that was taking place. The researchers were looking for women who used oral PrEP to see if they might want to try a different method. It’s a silicone ring impregnated with anti-HIV medicine. Inserted into the vagina, it stays there for a month, slowly releasing the drug.
Oliver decided to give it a try, but found it also came with problems.
Sometimes my man wants to use his finger in my private part. He found [the ring] and he started saying, Maybe I’m using family planning. That I don’t want to have a baby with him. So he started to quarrel with me. I can’t say, I’m using it because I don’t trust him. He has a lot of women, so I have to protect myself.
And when he’s not around I have to struggle to find money. But sometimes I’m going with someone I don’t know, and I have to protect myself.
Then Oliver got word that the study, known as MOSAIC, was expanding. The researchers would also be offering a long-term injectable, cabotegravir. Known locally as CAB-LA, it requires only a shot every two months.
In Uganda, the wait for CAB-LA has been interminable. Early clinical trials were actually conducted in Uganda, along with several other African countries. Results came out more than five years ago showing that injectable PrEP was superior to oral PrEP. While people in the United States gained access to CAB-LA in 2001, Ugandans are still waiting. The trial that Oliver participated in was supposed to be one of the last steps ahead of finally rolling out both the vaginal ring and CAB-LA.
CAB-LA solved all of her problems.
I was happy when I was using that one. I’m protecting my life.
She had only gotten a single injection when one of the researchers contacted her to tell her the study, which was scheduled to run through 2028, was ending. The study was paid for by the U.S. government and the Trump administration was ending that support. Even if Washington eventually restored funding, the pause would corrupt any findings. There would be no more shots or rings.
Oliver is extremely soft-spoken, to the point I had to get her to repeat herself often. But when I ask her to describe how the abrupt ending of the study has affected her, she is instantly animated.
How am I going to protect my life as they are now going to stop? I have to go back to work. The injection is not there. The ring is not there.
Her only option now is oral PrEP, which was already widely available before the trial started. Except that prevention services in Uganda are largely funded by the U.S. government, which means that even sourcing oral PrEP is now difficult.
I don’t know what to do.
Oliver is not the only one who is upset.
Betty A. was selected by her fellow sex workers years ago to become a PrEP ambassador. Among her responsibilities, she worked with one of the local HIV service organizations to recruit women to join the MOSAIC project.
I was already there, working with these young girls. I told them when they brought in the oral, and when they brought in the ring PrEP and the injectable. That’s when I came in and started telling them about other choices so that they can make their own choice. They were so happy about it. They love the ring and injectable so much.
For the injectable, they don’t give it from the community clinic. You just pick your time, you come to the facility, they inject it from here. Then the community members, they will not be knowing that you are using any method to prevent AIDS.
It fell on Betty to tell the study participants in her community that it was ending early. That the ring and the injectable would no longer be available, at least not in the immediate future.
They were used now to the injectable. So they have a lot of complaints. You find when you go there to the community, you them that now the injectable is already stopped. So they have to continue using the oral. You find that they don’t want to come because they are already used to the injectable.
They are not coming now, because they complain that taking medicine every day, it is so hard for them. They always ask me, Have they brought their injectable? Then I always tell them that it’s not yet. But in case of anything, I’ll let them know.
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