Stefani Moore has been living with HIV since 1990, but if you ask her age, she’s very likely to give you an old Phyllis Diller line: “My number is unlisted.”
“The fact that I even know who Phyllis Diller is and that I have a 30-year-old son should give you some clues,” she joked.
While people living with HIV may change treatments for many reasons—the old regimen stops working, side effects make it intolerable, or just to simplify treatment—some of those early to switch to long-acting injectable Cabenuva (cabotegravir/rilpivirine) did so because age and other health conditions made it the right option for them. Moore is one of them.
Indeed, for some older people living with HIV, the real advantage is the lower impact on the liver—because it’s not an oral drug, it doesn’t have to be metabolized by the gut through the liver before circulating in blood—and the kidneys—the slow, steady release of the drug from the intramuscular injection means there’s no spike in drug levels to overtax the kidneys, said Mark Watkins, DO, an HIV provider at Philadelphia’s Mazzoni Center.
Plus it’s not a drug combination that contains Viread (tenofovir disoproxil fumarate), which impacts the kidneys more than other HIV medications. It’s one example of how different treatments work better for different populations (see sidebars for more considerations about switching to Cabenuva for elders living with HIV and youth living with HIV).
Bill (not his real name), a 69-year-old retired IT engineer from the south of New Jersey, is another person who switched to Cabenuva after decades on HIV treatment. For him, it was a practical decision. Bill has been living with HIV since 1998, and while he’s had an undetectable viral load for much of that time, he also has high blood pressure and diabetes.
The latter meant that lab results showed that there was “still a lot of protein in my urine”—a sure sign that his kidneys were struggling. Bill was the first person treated at the Mazzoni Center to receive the shot. And it was with an audience. Everyone else was learning as much as he was.
For him, the advantage wasn’t a stop to daily pills. He was used to that.
“It’s not as easy as just waking up in the morning and popping two pills in your mouth,” he said of the switch. “But it’s much better on my kidneys, so I’m taking off something that could go on to become another problem.”
Not everyone who switches does so because of diseases of aging. For some, it’s to avoid such diseases and the pain of avoiding daily pills. Victor Hurdle, 46, has only been living with HIV for a fraction of the time Bill has, having been diagnosed with the virus on his 40th birthday. And he has no such chronic conditions that can lead to kidney damage. But he doesn’t want to get them, either. So when Watkins told Hurdle about the monthly shots, he decided to switch as a preventative measure.
“I didn’t want to find out 10 years down the road that ‘Oh, I should have switched because of [kidney impact],’” he said.
For Hurdle, the switch to Cabenuva has been mostly about convenience. As someone without other chronic conditions, he was unused to taking a pill every day. It took him years, he said, to realize he could use an app to remind himself to take his pills. And there were a few times that he traveled for his job as an event planner when he just plain left his medications at home.
One time, Hurdle remembers getting a prescription sent to a pharmacy in New Orleans where he was visiting. Now he realizes he could have signed up for his meds to be mailed to him, but at the time these were all things he had to learn.
But now with Cabenuva, Hurdle can go on a trip, like the 12-day trip he took recently—his first since the start of the COVID-19 pandemic—and he didn’t have to set any timers or worry about remembering to pack his pills. Now, his only concern is to make sure he’s in Philadelphia every 28 days so he can walk over to Mazzoni Center for a top up for another month.
“If you’re, like anyone else, where life is getting in the way of remembering to take your pills, you should seriously consider Cabenuva,” he said. “Three days of minor pain [from injection] is well worth the sacrifice. You don’t have that anxiety or trepidation. It’s gone.”
For Moore, living with HIV for more than 30 years means she’s taken her share of pills—probably more than her share of them. She remembers “brutal” years, when the 19 pills a day she took “tore me up.” She remembers more recent years, when the number of pills went down to four and they didn’t hurt her system quite so much.
And then there were the last few years, when just two pills with dinner were all it took to keep Moore’s HIV viral load undetectable and her CD4 cells high. But then in January 2021, Watkins of the Mazzoni Center, her provider, told her that though her HIV labs were spot on, her kidney function tests weren’t.
“We have got to get you off these pills,” Moore said Watkins told her.
She decided to try the two intramuscular shots in the hip of Cabenuva—the only treatment she would need for a month. The first shot was a doozy, leading her to limp around for three days. That’s gotten better. And so has her routine.
When, in September, her labs showed her kidney function wasn’t declining any longer and she still had an undetectable viral load, she was thrilled—so thrilled that she was willing to make the “nightmarish” drive from her country home outside of New Hope, Pennsylvania, to Mizzoni Center’s Philadelphia center city clinic once a month to get the next shots.
She is hoping the Food and Drug administration will approve Cabenuva for dosing every two months—research is ongoing—and for it to be more widely available. That’s the only thing that would make it better, she said.
“After 20 years of taking those pills every day, to not have to take those pills every day, I love it—I mean I just completely and utterly love not having to take all these pills,” said Moore. “It’s a game changer. It’s a life changer.”