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LA ART Journey
My Journey to LA ART: Why I Switched and What It’s Meant for Me

Released: September 22, 2023

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Key Takeaways
  • For patients with treatment experience and resistance to ART agents other than cabotegravir and rilpivirine, LA ART may be a way to simplify their regimen.
  • Self-administration of LA ART, if available as an option in the future, would give patients the agency to further improve their quality of life.

I am 61 years old and acquired HIV approximately 41 years ago. By 1988, I had begun experiencing symptoms of what was then called “ARC,” or AIDS-related complex. At the time, my only option to access antiretroviral therapy (ART) was to volunteer to be a guinea pig in the AIDS Clinical Trials Group’s early azidothymidine studies. That began an 8-year-long odyssey of monotherapy and then dual therapy, which was, sadly, “state-of-the-art” treatment at the time.

Unfortunately, as we know well today, these single and dual HIV treatment regimens didn’t work, and I developed resistance to the drugs one after another. By 1992, with no active drug treating my HIV, I ended up in the ICU with Pneumocystis pneumonia, 2 collapsed lungs, and a T-cell count of only 2. I was fortunate to pull through, and I continued to battle along until 1996, when protease inhibitors first became available and I was finally able to begin an effective combination ART regimen.

Drug Resistance
Because of my resistance to ART caused by my history of taking monotherapy and dual therapy, I had preexisting resistance to nucleosides and certain protease inhibitors, and I had to switch regimens many times over the years. But I was fortunate to find an ART regimen that worked, and I have been stably virologically suppressed ever since. Twenty-five years after first starting ART, I found myself on a somewhat unconventional regimen of raltegravir, oral rilpivirine, boosted atazanavir, and maraviroc. My regimen had a strong protease inhibitor and integrase inhibitor backbone and was nucleoside sparing because of my drug resistance.

Adverse Events and Comorbidities
As I have aged, I have developed hypertension and gastroesophageal reflux disease (GERD). Managing my GERD while taking rilpivirine created challenges. I knew not to take my antacids too soon before or after my morning rilpivirine dose, but often I would have breakthrough heartburn in the middle of the night and have to wake up and take another antacid. So, the following morning, I’d have to count the number of hours since I last took an antacid to know if I needed to delay my morning dose of rilpivirine.

These drug–drug interaction challenges were my motivation for switching to a regimen that contained long-acting (LA) ART. When LA ART first became available, I was ready to switch because I had been keeping up with all of the data and knew this was an effective option for me.

Unfortunately, that was during the early part of the COVID-19 pandemic, and my clinic was unable to overcome the logistical barriers to administer LA ART. To me, these logistical challenges have been the most onerous part of accessing LA ART. My insurance requires that I be the one responsible for coordinating the delivery of the drug to my clinic for my injection appointment. My experience has been that the American healthcare system is very fragmented and dysfunctional, so it took about a year for all of the logistical barriers to be addressed so that I could finally start LA ART.

Starting LA ART
I have tolerated the injections well. I might have a sore butt for a couple of days due to being injected into big muscles on both sides, but taking an aspirin or an ibuprofen helps. Switching to an injectable version of rilpivirine has allowed me to manage my GERD without drug–drug interactions, making a big difference in my quality of life while allowing me to continue to effectively manage my HIV.

Decreasing My Polypharmacy
When I first started treating my HIV, I had to take not only the ART, but also medications to prevent opportunistic infections and to manage the adverse events of the ART itself. At one point, I was taking 50 or 60 pills a day.

Over the years, I’ve been fortunate to lower that pill count dramatically, but I’ve never been a candidate for the simple 1-pill-a-day regimens because of my acquired drug resistance. And as I have aged and acquired other comorbidities, I’ve had to start adding more pills back in to treat new conditions.

I still take pills twice a day, and I’ve always been grateful to have these treatments available and fortunate that I tolerate them well. Although my switching to LA ART has not created a pill-free HIV regimen like it can for other people living with HIV, I now have fewer pills and fewer drug–drug interactions and food restrictions, which is less for me to worry about.

Self-administered LA ART
As a patient advocate, I encourage the empowerment of patients to provide their own care whenever possible. Certainly, many people have experience with self-injecting medications such as enfuvirtide/T-20, insulin, growth hormone analogs, or testosterone. So, the self-injection experience is there, and a lot of people would love to bypass all the logistical issues of having these drugs administered in a clinic setting. To be able to just go to the pharmacy, pick it up, and self-administer would be liberating.

For certain populations, such as people who’ve had silicone injections in their buttocks to combat wasting or trans folks who receive silicone injections as part of their gender-affirming care, there is a need for alternative LA ART injection sites, such as the thigh muscle, where they can self-administer their ART. For many people living with HIV, self-administration of LA ART would be a huge plus, and I look forward to us getting there.

Your Thoughts?
What experiences have your patients had when switching to LA ART? What is your approach to educating patients about what to expect and how to manage injection-site reactions? Join the conversation by leaving a comment.