If you’re HIV negative, PrEP vastly reduces the likelihood you’ll acquire the virus. Unsurprisingly, it’s hugely popular with gay and bi men. Once you start taking the daily medication, you just keep taking it, right?
Well, actually, it’s not so straightforward. A study from Australia found that one in four PrEP users stopped taking their PrEP during the pandemic. Another 5% switched from daily dosing to on-demand dosing.
Queerty spoke with doctors from sexual health clinics in the US who reported similar findings.
It’s not just because some people were having less sex: Some patients felt less comfortable traveling to clinics whilst they were supposed to be staying home. Others didn’t take to telehealth services.
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“There’s that digital divide,” says Dr. Maya Green, Medical Director for Howard Brown Health and Founder of HIV Real Talk, a community-based HIV screening and prevention project in high-risk communities in Chicago.
“There’s the access to care issues that a lot of people experience, and then certainly if you were in a community that has been marginalized, the access to care has some strains on it. The pandemic snapped the small strings holding that process together for a lot of clinics and a lot of PrEP access.”
Related: Gay men already have begun their ‘Hot Vax Summer’ of hookups – are you prepared?
However, things have definitely been returning to normal this year.
Jorge Roman is the Clinical Director of San Francisco AIDS Foundation. He noticed a big upswing in services since February. It’s now back to pre-pandemic levels. Talk of a “Hot Vax Summer,” with the newly-vaccinated throwing themselves back into dating, has seen many resume their sex life with gusto.
Because of this, if you have interrupted your normal PrEP routine, it’s very important to start again. Everyone we talked to said there are some things you should bear in mind.
1. Don’t stop straight after a sexual encounter
“If someone is taking PrEP daily and engages in unprotected sex with somebody, our recommendation is always to take PrEP for at least one month after that sexual encounter,” Roman told Queerty. “That would be the first place where people are putting themselves at risk if they start and stop it too suddenly.”
Like the Australian study, Roman says he knows of some men that have switched to taking PrEP on-demand during the pandemic.
This means taking a double dose 2-24 hours before sex. You then take a single dose 24 hours after that dose, and then another 24 hours later. Studies have found this to be as effective as taking PrEP daily.
However, it should be noted, the FDA in the US approved PrEP as a daily medication only.
On-demand dosing requires knowing in advance when you might be having sex and a certain amount of planning. Many people prefer the simplicity of taking a daily pill and knowing they’re always prepared for sex. This leads us to the next point….
2. Don’t stop unless you know for certain you won’t be putting yourself at risk
Roman says failure to take PrEP as prescribed can lead to people becoming HIV positive. He’s seen it.
“Over the last year, I would say it was individuals who had a prescription for PrEP and maybe not filled it or were thinking they weren’t at high risk so were going to utilize on-demand strategies, and just didn’t take those first two pills and thought, ‘I’ll just start taking it after the encounter and I’ll be OK.’
“So there have been many cases where the individuals had a prescription, knew what they had the option of doing, and unfortunately didn’t.”
WH Harris is a TeleKind Provider, which alongside Kind Clinic, is a program of Texas Health Action. He’s similarly experienced people believing they wouldn’t be putting themselves at risk.
“I have had a couple of patients who stopped taking PrEP as directed during the pandemic thinking that they were not going to be sexually active, then unexpectedly they engaged in sexual intercourse.
“Months down the line their HIV test came back reactive. The risk is there.”
3. If you stop, always take an HIV test before restarting PrEP
This is crucial. Again, those we spoke with said they’d known individuals who stopped taking PrEP, contracted HIV, and then wanted to start PrEP again without knowing they were positive.
“If someone was off PrEP and had a sexual encounter with someone who happened to be HIV-positive who wasn’t controlling their viral load, and then decides to re-start PrEP, the concern is they’re on a medication that prevents HIV but doesn’t control HIV,” says Roman.
“If they were to become HIV positive, and restart PrEP, there is the danger they’d develop resistance to the class of medications that PrEP – Truvada and Descovy – falls under. That is always the concern.”
In other words, if you’re HIV-positive and take PrEP, it can seriously screw up your treatment options further down the line.
Dr. Green remembers one such case of seroconversion.
“I’ve seen just one person,” she says. “They restarted PrEP without knowing they were HIV positive. Luckily that person came in, said ‘Hey, I need my labs.’ They had started PrEP again just a couple of days earlier. We were able to get that result and do what was needed for the patient.”
Always get tested for HIV before starting or restarting PrEP. If your insurance doesn’t already demand it, it’s also a good idea to get tested every three months for HIV and other STIs, and check your kidney function.
4. Remember to take PrEP for a few days before any risky sex
If resuming a daily dose of PrEP medication, also remember that it takes a few days to reach full effectiveness. Around a week for Truvada for anal sex, or 21 days for vaginal sex and injecting drug users who share needles.
5. Finally, if you struggle with a daily pill, stopping and starting may soon be less of an issue
The Covid pandemic has turned our lives upside down in many ways. Although PrEP is highly effective at protecting you from HIV, getting back into a routine can be hard. And some people, for whatever reason, will always struggle to take a daily pill.
Fortunately, further treatment options might soon be available. Two of the clinicians we spoke to expressed excitement about Cabotegravir. This injectable form of PrEP, which can be given by a doctor every couple of months, is expected to be approved for use by the FDA later this year or early next year.
“That’s going to be another really great medication in the toolbox for patients who want to take PrEP,” says Dr. Natalie Vanek of Legacy Health in Texas. “I think that’s going to be a game-changer. I’m really looking forward to that for our patients.”
Related: FDA says injectable PrEP a ‘breakthrough’ therapy as it pends approval
Vanek also says the pandemic has had some unexpected benefits.
Although she works from a large clinic in Houston, the increased use of telehealth has seen a big increase in gay men accessing PrEP from more rural areas of her state.
“Maybe they weren’t so comfortable seeing providers in the more rural communities,” she says. “Now they can see us just by the click of a few buttons on their phone or computer, and they’re more comfortable coming to a facility like ours. We’ve gotten so many more patients on PrEP.”
Getting people on PrEP is one thing. Keeping them on it is another.
“People tend to go on and off PrEP for a variety of reasons,” says Vanek. “They may be in a relationship, or maybe that relationship has stopped and started, and that’s OK, but as long as someone thinks they might be at risk, we certainly want them to be on PrEP and stay on PrEP.”
Her sentiments are echoed by Jorge Roman.
“Right now, in San Francisco, we want to put the message out there that people get back into their normal routine with PrEP.
“Look at sexual health care as one of those routine things that they need to get back into, so going in every three months for a check-up. They can have conversations with people like myself who can help guide their sexual health plan to keep them HIV negative.”
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Me2
I have no doubt that prep has saved lives and driven down positivity rates, but I do have concerns about the long term effects of the drugs. With science being what it is today, I’m hopeful we’ll have an HIV vaccine in my lifetime. Until then it’s still mostly condoms only for me.
Bromancer7
The two drugs in Truvada are 20+ years old. If there were any significant long-term issues with it we’d know by now.
Kidney, bone, and liver issues are known, which is why standard protocol for the drug requires blood work every 3-6 months.
frankcar1965
Is this any different from HBP meds or cholesterol meds that so many take? Stop the fear mongering.
Prowelsh56
Be sure to get the blood work every three months. After long term use of Descovy I did have to stop after kidney functions went sharply down. VERY important to check those. I did stop. My kidney functions never fully recovered but are much much better; no longer reading at stage 3/4 kidney disease Also consider my age. I am 65 so my physiology is not that of a 20 year old. One expects a few changes as one ages. BUT get the tests.
Consider This
This is quite useful information. Thanks for sharing. You may save someone else from big problems down the road.
Bengali
Being HIV+ I was on Truvada and two other HIV meds for a few years and seeing a bit of add’l protein in my pee, I was put on Lisinopril. It helps protect your kidneys. No further escalation since I started Lisinopril. I went off of Truvada about 5 years ago and am now on Symtuza (combo med). Undetectable and tcells are consistently at 1200 or more. Not experiencing side effects from Symtuza.
1wagonho
Thanks for sharing this. I am not on Prep, but have thought about it. I appreciate hearing someone’s experience firsthand.
CityguyUSA
Biggest Pharma scam ever. Their selling you something that a condom would suffice for and protect you from a larger ranger of diseases than just HIV and not cause your vital organs any damage. This is the very same drug that they told you that you should wear a condom while using.
Vince
So driving hiv infection statistics back means nothing? There’s always going to be high risk people and scolding them is pointless.
Raphael
@Vince He’s right. PrEP may be a good option for people that didn’t use to wear a condom, but for people that did, it’s useless. While it may be an “extra” protection, it’s not as effective as simple wearing a condom, and I’m always skeptical about taking drugs daily, as it obviously puts a strain on your organs. I don’t think it’s worth the (controversial) little extra protection it provides… The only thing positive I have to say about it, as that here in my country, you can get it for free.
Cam
Let me guess, you’re also against the covid vaccine.
Seth
Good thing there are these magical things called condoms.
RWB
I was sorry to read an article on this site that contained so much stigmatizing language:
1. “lead to people becoming HIV positive” – preferable: lead to people acquiring HIV
2. “risky sex” – preferable: potentially putting oneself in contact with HIV
3. “unprotected sex” – preferable: condomless sex
Obviously, there are additional options, depending on context. But, I’d like to see Queerty do a better job helping to reduce the stigma of HIV and certain sexual practices.
Also, I was disappointed the article did not take the time to educate readers about post-exposure prophylaxis (PEP or nPEP). If someone is concerned about a possible HIV exposure, treatment can be initiated within 72 hours of that possible exposure (the sooner the better). PEP has been found to be highly effective in preventing the acquisition of HIV. If you are concerned about a possible HIV exposure, call your doctor, visit your local sexual health clinic (including Planned Parenthood), or go to an emergency room. In some states, you can access PEP at pharmacies. Also, lack of health insurance is not a barrier to getting PEP medication. There are assistance programs that will cover the cost of the medication for un- or under-insured people.
rbuk
Please stop playing down the seriousness of HIV. It is still an incurable virus. The more you airbrush and neutralise language the more people who won’t take it seriously and will end up contracting it.
What isn’t “risky” about sex that might lead to a person contracting an incurable virus?
Heywood Jablowme
I didn’t “acquire” HIV. Some pr!ck infected me with HIV!
Cam
@RWB
You used as an option ““lead to people becoming HIV positive” – preferable: lead to people acquiring HIV”
Please feel free to point out how one statement is stigmatizing and one isn’t. Your statement points out statements you don’t like, but you don’t explain why, for example, in this instance the first is stigmatizing and the second isn’t.
winemaker
Prep very likely like many prescription drugs, is costly and not within many peoples budgets. There’s no profit in cures only maintenance. The drug companies want to keep peddling stuff like this as it increases profits which is their bottom line. Prep like all drugs has negative side effects and is toxic on the body over time when using a condom, a cheap and effective barrier can mitigate many future problems. Be wise. BTW: what’s all the barebacking going on with the porn studios? Talk about irresponsibility
RWB
Sorry, winemaker, you’re misinformed. People have been accessing PrEP for almost 10 years and getting the medication for free or near free. I support your political statements about drug companies, including the maker of PrEP drugs. But, to it’s credit, that company made its PrEP medication free for most people, insured or uninsured. (And yes, I know the company we’re taking about takes advantage of every aspect of deregulation to stash its cash in the Cayman Islands and elsewhere.) If you were never informed about patient assistance programs for PrEP, that is a failure of your doctor or your local public health department.
JamesBDallas
You are mis-informed, insurance including Obama care cover 100% of the testing and the prescriptions are free. Not sure if the drug company or insurance is picking up the cost. I understand the comments about condoms but Prep prevents transmission better than the use of condoms if taken correctly. I only have to remember to take the pill each day rather than to ensure my partner wears a condom when I may be a little buzzed or in a big hurry to have sex. Prep is a huge game changer in the prevention of HIV.
Cam
What a shock, the right wing anti-vaxxer trolls don’t like the medication that can help lower HIV infections either.
Let me guess, Putin will soon tell you to start ranting about measles vaccinations too right?
Bengali
I love that PREP is available for people but I know some who take it and then don’t wear condoms. STDs are still rampant but in a battle of brains and dicks, dicks always seem to win.
BigDavidO
Unfortunately, both my personal and professional experience tells me that well educated, intelligent persons will take risks for immediate pleasure (that dopamine surge, again) that they wouldn’t take in their other activities requiring vigilance, like driving and crossing busy intersections. This is not particular to LGBTQ persons, just human behavior established over millennia in all cultures and groups. And after an extended period of isolation during the pandemic, the temptation to return to prior behavior patterns is even greater. What the article didn’t talk about enough is the issue of open communication with sexual partners prior to engaging in unprotected intercourse. The same stigma and fear of rejection that used to inhibit some persons from disclosing their HIV status might now keep persons who stopped PrEP during the pandemic from disclosing that they d/c’d PrEP during the long period of “social distancing” or that their VL was now detectable.
winemaker
Those that think some pill will protect them from some nasty disease is a fool with a capital ‘F’! The reality: all drugs have side effects and long term use wreaks havoc on the body. And those who have unprotected sex with strangers ( aka ‘hookups’ ) who say they’re ‘clean and on Prep are God damned fools, period. BTW: long term use of Prep aka Truvada causes problems with your kidneys, something you can’t live without.
Cam
Except the results of years of use of this drug shows that is exactly what it does.
But again, you right wing Russian trolls oppose anything that could keep America healthy. Your trolling is sad and weak.
whateverokok
And you Cam are a monkey to an organ grinder. Drop the sh–. Nobody’s buying.