I probably speak for other folks living with HIV when I say that I have a chronic recurring nightmare in which I somehow “forget” to take my HIV meds, fail to take them with me on a trip or suffer some natural disaster like a flood or hurricane in which I lose them. What would I do? If I could not get back on meds immediately, would I develop debilitating resistance? Once reunited with my meds, could I just jump back on them or would I need a doctor’s visit, testing, etc.? And if I could not get back on meds quickly, would I progress swiftly to AIDS, illness and death?
I decided to take these questions to my former HIV doctor, Antonio Urbina, MD, longtime medical director of Mt. Sinai’s HIV clinic in NYC’s Chelsea neighborhood, where he counts many long-term survivors among his clinic’s roughly 5,000 patients. He’s navigated patients through every variation of these scenarios, so here’s what he had to say.
Let’s start with an open question: Should you worry if, for whatever reason, you don’t take your HIV meds for an indefinite period of time?
Urbina: For the most part, you’re going to be okay. With most of the current HIV regimens, many of which are single-pill, if you’re undetectable, you’re not going to have viral breakthrough and develop resistance from not being on them for a few days and you can just restart when you’re reunited with your meds without having to see your doctor or have a resistance test. Although you would want to have a viral load test within about a month of restarting just to make sure you’re still undetectable.
But basically your virus wouldn’t become detectable until you’d been off meds for one to two weeks, jumping higher [if you had stopped] two to four weeks, and then showing really significant rebound within eight to 12 weeks. And of course one usually doesn’t show symptoms of viral progression and AIDS for months or even years without meds, depending on one’s treatment history.
So, no real worry then about a temporary interruption?
The only worry is if, for some reason, you go off one or some of your HIV meds and not others (SEE My unexpected treatment failure). This scenario could pertain to long-term survivors who’ve developed resistance and are on more than one pill, or maybe a combination of pills and an injectable med like Sunlenca (lenacapavir). What would happen here is that you would be on a suboptimal regimen and you could develop resistance to the med(s) you are still on...
...and even the ones you are off? That seems to be what happened to me.
The longer you stayed on that suboptimal regimen, the more you would court even deeper resistance that would really complicate finding a working regimen going forward. So it’s very important, if you take more than one pill or med, to either make sure you take them all or none at all. In other words, if you don’t have access to Pill #1, do not take Pills #2 and #3 until #1 is back in the mix.
Most of us know about U=U, that if you’re undetectable then you can’t transmit the virus to sexual partners. But what if you become detectable?
Research shows that you are highly unlikely to transmit HIV sexually with your viral load anywhere below 1,000. Having said that, you can’t know what your viral load is off meds day to day unless you’re tested—so until I’d been back on meds for a few weeks, I would probably refrain from condomless sex with an HIV-negative sex partner unless they were on PrEP [the HIV prevention regimen].
What if you do develop resistance to a med that is in virtually every HIV regimen, such as tenofovir, which is what happened to me? Are you screwed?
It’s true that developing resistance to tenofovir would be a concern because it is found in so many regimens and because other drugs in its class (NRTIs, or “nukes”), like abacavir and AZT, are not as desirable because of side effects. However, these days, you could put together a regimen with no NRTIs whatsoever, such as a regimen of a boosted protease inhibitor like Prezcobix (darunavir + cobicistat) and an integrase inhibitor like Tivicay (dolutegravir). Other new meds that have helped many drug-resistant folks get to undetectable include Sunlenca (lenacapavir), Rukobia (fostemsavir) and Selzentry (maraviroc).
And in the very worst-case scenario of not being able to put together a regimen that gets you to undetectable, because you’ve amassed so much resistance, then research has shown that staying on a regimen that suppresses your HIV partially is better than being on no regimen at all, because, over time, drug-resistant HIV tends to become less virulent.
The other thing I should add is that, if you do develop resistance and need to switch meds, you need a provider who is really proficient in interpreting resistance tests to help you figure out a new regimen. Especially if your provider is new to or not very familiar with HIV medicine, don’t hesitate to seek a second opinion, or to ask your provider if they can consult with a more experienced colleague before prescribing your switch.
What about another worst-case scenario of losing your meds in a natural disaster or some unforeseen circumstances?
In the U.S. in 2024, it’s very unlikely that you are not going to be able to get new meds in a reasonable amount of time even after a natural disaster. A provider’s call to your insurer could probably sort that out, and additionally, one of the reasons we have the AIDS Drug Assistance Program (ADAP) within the Ryan White CARE Act is so that no person living with HIV ever goes without HIV meds—even if, say, you had to move states because of a natural disaster, such as people who fled New Orleans for Houston after Hurricane Katrina.
But again, even if for some reason you were not able to go back on HIV meds for a very long time, it would nonetheless be a very long time—months or even years—before you would develop AIDS and get sick. It’s far from ideal to be off HIV meds, because active HIV can create damage in the body in all sorts of ways, but it’s highly unlikely that you’re going to get sick and die anytime soon if you go off your meds.
What’s the final takeaway?
You should do everything possible to stay on your meds because you’re healthier with your HIV fully suppressed, but if for whatever reason you are off meds for a few days or even a few weeks, you can probably restart with very little harm done.