I stopped taking my HIV pills

“My only concern,” my doctor told me with an excruciatingly heavy pause, “is that you’re working a lot back there.” That was the politest way I’ve ever heard someone say I have a fat ass.

I understood why he broached the subject so deliberately. One of Philadelphia’s top HIV doctors, he served on the Cabenuva approval study here and is also now an expert at dealing with my shifting personality and occasional, sometimes warranted, sometimes not, outbursts.

I was excited by the prospect of Cabenuva’s new injectable HIV treatment, which includes injections of two drugs, cabotegravir and rilpivirine, given monthly or every other month by a healthcare professional. So any concern, let alone this concern, was a touchy subject. Also, my mom used to buy me jeans from the husky department at JCPenney. And while my doctor’s remark today is indeed a compliment based on feedback from the men I date, it’s still a topic fraught with anxiety and self-doubt.

It’s kind of like my relationship with HIV. It’s not like I ever wanted to be HIV positive. But it’s so much a part of who I am now that, well, it’s complicated.

For about a decade, I’ve been taking a pill once a day every day. I have never noticed any side effects, although it could be argued that weight gain could have been attributed to them.

Membership has been a part of my life. Getting access to my meds when I was unemployed, uninsured, even homeless at one point, just wasn’t a top priority. It was the priority.

As a result, I have had little to no HIV-related complications. There is still so much work to be done: just over half (55%) of HIV-positive people in Philadelphia, where I live, are on medication and virally suppressed. Nationwide, the figures are only slightly better, at 64%.

Even so, the idea of ​​tossing the pills entirely for a once-every-two-month doctor visit would take some getting used to, though now jeopardized by a flesh-and-blood peach emoji.

“Is my butt so fat you’re worried I can’t inject?” I asked, puzzled. I Gained Weight During the COVID Quarantine, But Was It Really That Much?

“No, no, we can do it,” he assured me. “We just have to make sure. We may need a larger needle.

“I always say that on dates,” I joked. Balance the tragedy and trauma with a cheap laugh, I say.

Seriously, the new pace of treatment would take some getting used to.

Josh Kruger

First, we need to make sure I’m still undetectable, as I’ve been for nearly a decade. Then, we schedule the day for the first treatment: two injections, one into the muscle at the top of each cheek. I should continue taking my pills about four days after the first treatment before stopping altogether. Thirty days later, I get two more injections as part of my starting dose. After that, I go every two months for the same treatment, continuing to have my blood drawn to make sure everything goes as planned.

Simple. Guy?

After repeating the “one pill once a day” mantra for nearly a decade, my first impulse was to embrace the supposed freedom of not taking any pills. The pill-based treatment sounds simple, but those viral suppression figures tell a different story. Clearly, if it’s that simple, why are so few people undetectable?

Basing your life-saving care on your ability to maintain access to and take your medications, no matter what, every single day is great until you can’t anymore. More precisely, you cannot take your medicines if you have no place to store them. It’s hard to top up anything if you’re too depressed to do the things necessary to stay in touch with care.

In a study published in February 2022 in BMC Infectious Diseases, researchers found that “homeless patients were half as likely to achieve viral suppression as those who had permanent or stable homes.” Researchers including Vladimir Berthaud, MD, MPH; Livette Johnson, MD; and Ronda Jennings, reported that study participants who were undetectable, with viral loads of less than 20 HIV copies per milliliter of blood, were overwhelmingly and stably harbored.

“While 74 percent of permanently housed patients achieved viral suppression,” they wrote, “a much smaller proportion of homeless patients (54.7 percent) remained virally suppressed.” Having been homeless myself, I know all too well the difficulty of maintaining HIV treatment while trying to sort through everything else.

So it makes sense to completely bypass the process with injections. However, even in studies where the injections receive high marks from consumers, their effectiveness is about the same as the pills in terms of treating HIV. Conversely, emerging studies of Apretude (cabotegravir), an injectable drug used as pre-exposure prophylaxis (PrEP), in which HIV-negative people take drugs to prevent HIV, show that the injections are even more effective than their pill counterparts .

When the pills go away, does part of me go with them?

The record, therefore, places injectables in an equal or superior place to traditional treatments. This makes it an especially effective tool in the “HIV treatment and prevention toolbox” advocates and providers so often talk about. Of course, injectables won’t end the epidemic. No single treatment will do that. But they appear to offer an alternative intervention preferred by HIV-positive users — in one study, 98 percent of people preferred Cabenuva over their previous pill regimen — that’s also even more effective at preventing HIV among HIV-negative people.

However, the idea that people will be able to readily schedule appointments months in advance and stick to them isn’t exactly a given. It is possible that the people most likely to benefit from and need bimonthly injectable HIV drugs – those with intermittent connections to care or unstable housing, or who are members of traditionally underprivileged communities – will be the least likely to adopt Cabenuva as treatment.

It’s not yet clear whether we’ve learned anything from accessing PrEP and can apply it to Cabenuva. But we miss an opportunity if we don’t. “Blacks in the United States account for less than 10 percent of PrEP prescriptions, but we account for 40 percent of new HIV cases,” national HIV counselor Leisha McKinley-Beach explained to WordInBlack.com writer Alexa Spencer . “You know, there’s something wrong with that picture.”

Unless America finally takes its equity efforts seriously, the same structural barriers and problems that we find in PrEP treatment or access in general are likely to plague injectables, no matter how many people who take injectables say they prefer them. .

That doesn’t mean they’re something to dismiss as irrelevant to all but the most privileged, though. In my case, despite being a cisgender white guy, I’m also currently accessing treatment through Medicaid while living in the poorest big city in America.

For me, around the 29th of every month is treatment day. Can’t go more than a week before or after that date. Since I get it every other month, I check to see if treatment is on that month or if it’s one of my “bye-byes,” as the NFL calls its off weeks. I break it down like this so I can remember it and explain it to people.

Part of me doesn’t trust. What if my butt is really too fat? No pills? No “proof” that I’m in treatment and not just saying I’m undetectable as some people worry? Being under 40 with a granny-style pill organizer is something I won’t miss, but it’s been a part of my life this entire time. When the pills go away, does part of me go with them?

These questions are trivial, however, when you zoom out to the entire HIV-positive population.

Josh Kruger

If those figures for viral suppression are what they are now, will they improve as more people switch to Cabenuva or similar treatments with such a complex process to start? And if someone has trouble with adhering to something as simple as one pill once a day, what are the chances they’ll remember “two injections given twice separated by 30 days and then a round of two injections every 60 days thereafter?”

And have we started learning about equity and access to care, or are we just churning out reports with recommendations for meeting the diversity and inclusion requirements that come with federal grants, and then leaving those reports in drawers or on PDF download pages rarely visited hosted by the state and the ASL?

At the end of the day, heady concerns like these weren’t strong enough to overcome the clear scientific evidence showing that Cabenuva is, without a doubt, superior to pill regimens. I was sure I would regret not at least trying it.

“So are we doing this?” my doctor asked me.

We set a day for me to come back. I had to check my labs again. Once they are healthy again, the order would go through the pharmacy, even if the treatment is done in the doctor’s office. Suddenly, I got nervous again. He was more of an excited nervous, sure.

The data was just too compelling, so I ignored the jitters and braced myself to never again have to say, “I take a pill once a day,” in reference to my HIV treatment.

Now, it would be, “I get two shots once every two months.”

Maybe it’s not a clever slogan. But, based on the research, I have an almost 100% chance of preferring it.

#stopped #HIV #pills
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