Patient Perspective: Switching to Long-Acting Injectable ART

My Early ART Experience
I was diagnosed with HIV infection in 2009. My first medication was the 1-pill regimen efavirenz/emtricitabine/tenofovir disoproxil fumarate. I had really vivid dreams when I was on that regimen and a very disturbed sleep experience. But I did pretty well on this drug and had no side effects aside from the sleep disturbances.

Over the next several years I took multiple oral regimens. Rilpivirine/emtricitabine/tenofovir disoproxil fumarate was much gentler, but did require that I take it with food. Since I started antiretroviral therapy (ART), I had experienced issues with the inability to lose weight because as much as I improved my eating habits—and I even started working out—losing weight became really difficult. Eventually my doctor decided to switch me to dolutegravir/abacavir/lamivudine and I did really well on that drug. Later I switched to bictegravir/emtricitabine/tenofovir alafenamide and appreciated that it was a  small pill. But when I learned about a potential injectable regimen, I decided that that was what I wanted to be on.

I was pretty consistent with my pill taking; I rarely ever missed a dose. For me, missing a dose meant I was off schedule by a few hours—I’ve never gone a whole day since being diagnosed that I’ve missed a pill. I’ve been undetectable almost the whole time since being on ART.

My Interest in Long-Acting ART
I’ve been interested in long-acting injectable ART for a long time. I first heard about the injectable regimen a few years back when it was actually still in clinical trials. When I heard it was approved and people were trying it, I inquired about it with my doctor. The clinic told me that there was one person in the practice that was on long-acting cabotegravir/rilpivirine and I would be the second.

I really wanted to be freed from having to take a pill daily. I don’t take any other medications than those required for my HIV. Sometimes my schedule changes and I always had this worry of “should I take the pill now? Is it too late? Do I wait for the next one?” To be free of those worries is a great relief.

I really had no hesitation in trying it because the doctor told me it would be safe to go back to oral medications if I did not do well on the injectable. I certainly wanted to protect my undetectable status. The only side effect I’ve had is soreness where the medication is injected. 

My Experience With Long-Acting ART
It’s definitely been a big relief for me to be on long-acting injectable ART. First, it frees up my evening because I don’t have to worry about taking my pill at a certain time. My medications always made me very sleepy, so once I took them, my evening was over. I would try and take them at about 10 or 11 PM, but the whole prospect of remembering to fit them in was overwhelming.

Traveling has also been easier for me. Even though my medications were once daily, I’d hide them and take them on the sly. I feel that stigma is the biggest issue with HIV. The condition itself can be well managed and my experience proves that. But carrying around my medication and worrying that someone would see it and know what it was—that was unnerving. Now I’m just able to be like anyone else and travel without medication.

Although it’s a big commitment to have to go into the office monthly, it’s an even bigger commitment to have to take a pill daily. I would definitely recommend long-acting ART. For me, it really has given me a lot of my life back.

Your Thoughts?
Do you have patients who have started or are considering long-acting injectable ART? How are you managing them? Join the discussion by posting a comment.