In 2013, I used an at-home HIV test kit that I’d received from a man I was seeing at the time. He wanted to have natural (condomless) sex with me, but we were both of the mindset that we should have our most recent test results before giving it a go. In a moment of passion, over wine and tiramasu, he pulled out separate OraQuick kits for us to use. I knew that I was HIV negative because I’d been celibate since the last time I’d gotten tested, so you can imagine how upset I was to receive a positive result. After recovering from my shock, I immediately booked an appointment to see my doctor, where I learned that I’d made a mistake and was still HIV negative.
Though I’d bungled the test, I did exactly what I was supposed to do with my follow-up: I sought help and reaffirmed my commitment to protecting my sexual health. Monica Gandhi, M.D., M.P.H.—the director of the UCSF Gladstone Center for AIDS Research and medical director of San Francisco General Hospital HIV Clinic—says that’s what makes at-home HIV testing kits so important right now, especially for “people who are reluctant to come in for medical care” during the pandemic.
“We’re profoundly concerned about people not coming in and losing sight of basic health care needs or new HIV diagnoses,” she says. “So they should come in to be evaluated by a doctor or provider regardless of their results.” According to research conducted by Cedric Bien-Gund, M.D., that’s exactly what most gay and bisexual men who use HIV self-testing kits do.
While looking at 10,000 responses from the 2017 National HIV Behavioral Surveillance survey—which includes self-reported information about HIV self-testing and behaviors among same-gender-loving men throughout the U.S.—he found that HIV self-testing increased overall testing frequency and, contrary to biased concerns, had no association with increased risky sexual behavior or diagnoses of sexually transmitted infections.
After giving a presentation at the Conference on Retroviruses and Opportunistic Infections—a leading infectious-disease conference—on this very topic, Bien-Gund spoke with TheBody about why HIV self-testing is a boon for preventative care, particularly during this period of reduced sexual health services.
Juan Michael Porter II: Your study indicates that increasing HIV testing options causes people to get tested more frequently, and has no association with increased risk behaviors. But can you tell me why some people assumed that increased testing would lead one to engage in riskier behaviors in the first place?
Cedric Bien-Gund: For a lot of HIV testing and prevention strategies, there’s always been a fear of risk compensation. [Risk compensation is the theory that people adjust their behaviors to perceived levels of risk and become less careful when they feel more protected.] Similar concerns have been raised with pre-exposure prophylaxis [PrEP].
Porter II: You mean the “Truvada-whore” slur that assumes that being on PrEP [a drug that protects adherent users from HIV] makes people less mindful of their sexual health.
Bien-Gund: Exactly. Where that comes into focus with self-testing is this idea of partner-testing, where if your partner’s test comes back negative, you might be less likely to use condoms. But HIV self-test kits only detect antibodies, so the idea is that you could miss acute infections because of a concern with increased condomless sex, which is, again, also a risk factor for HIV infection.
Porter II: I’m happy that your research has debunked that misinformation. Can you tell me why having access to self-testing is so important during the epidemic?
Bien-Gund: This study was done in 2017, obviously before COVID-19, but since the pandemic-enforced lockdown has reduced access, we’ve seen clinic-based HIV testing rates decline substantially, which is worrisome. Going along with that, we don’t know if the decrease in the number of diagnoses is just because of a decrease in testing.
I think self-testing offers new opportunities to address this area. Speaking anecdotally, within Philadelphia, our Department of Public Health initiated a program that provided free HIV self tests a few months before the COVID pandemic. Since then, we’ve seen a large increase in the number of requests for self-test kits.
There is a huge role for self-testing in getting people tested—[especially] because of the decrease in the number of people who want to come into community clinics or hospitals—along with a great potential for self-testing in the context of PrEP adherence and helping folks who need to have their HIV status regularly assessed, because it doesn’t require any face-to-face interaction and we know that people do prefer the increased convenience and privacy.
Porter II: And the desire for anonymity in the face of stigma. And now you’re talking about expanding the full continuum of care, which means empowering people with information about their sexual health; because more knowledgeable patients have better outcomes. How can we supplant the myth that “self-testing equals riskier behavior” with this idea?
Bien-Gund: There is no simple answer. We have to engage folks in all sorts of steps across the continuum of care. Getting people into the door for testing for the first time to know their status is the first step. The next step, if they are at risk for HIV, is at the very least offering them PrEP.
That step between testing and linkage to prevention services is another huge area that we need to focus on. In our study, we saw that self-testers tended to be younger folks with higher education and higher income. If we really want to address health disparities and inequities that are already rampant in certain communities, once people are getting tested—if they are positive—we have to focus our energies on getting them linked to care; and if they’re negative, and are still at risk, we really need to get those folks plugged into care.
Porter II: Care for all, regardless of their circumstances. Looking at the national HIV budget, which is greater than $33 billion a year, we see that less than $1.7 billion of that money is directed towards HIV prevention. Would you say that your report calls for increased funding to preventative services?
Bien-Gund: I think the report shows that prevention strategies really work and that a lot of our fears of risk compensation are really our own biases and prejudices and are not really based in evidence or reality. Seizing this moment, there is a lot that we can innovate in terms of care, and moving towards more flexible models of care; meaning we don’t have to get people to come in to get tested every three months, and that we should really be availing folks with more options in general for getting tested and into treatment and prevention.
It’s not a perfect comparison, but for folks who are skeptical, in some ways, HIV self-testing should be similar to a pregnancy test. Most people know that you can get an over-the-counter pregnancy test from a pharmacy, without any prescription. Depending upon your test results, you go and get further care.
We don’t require folks to go to clinics to get pregnancy tests; similarly, we shouldn’t really require people to do the same with HIV tests. And the importance of more options, along with increased anonymity and convenience of health testing, cannot be overstated.
Porter II: Looking at places where sexual health services are unavailable or difficult to access because of distance or lack of insurance, what suggestions would you make to health department directors and care providers to convince them that giving individuals power over their own care is a good thing?
Bien-Gund: The thing about HIV self-testing is that in many ways, it should exist outside of the health care world. And I think that people should be able to access HIV self-testing without having to go to a provider. That’s one of its huge benefits.
I think there’s a need to educate providers with regard to different testing options and making this clear. And I think that providers may not be the best points for interventions without testing because people who visit providers are already willing to see providers.
Porter II: Right.
Bien-Gund: One potential option is mentioning self-testing to people who come in because they are at risk for or are already living with HIV, as a potential way of getting the word out through their social networks.
In a completely different context, in East Africa, female sex workers who were given multiple self-test kits passed them on to their partners or clients.
Porter II: Like having HIV self-testing ambassadors.
Bien-Gund: Yes. Provider behavior is also important, but from the standpoint of getting tested and then continuing the HIV prevention continuum, I think we have to be more creative with disseminating self-tests to people and through social networks.
Porter II: Right. Whatever strategy ends up being used, it has to be something that works for the people who are accessing those services, or those products—otherwise, they will go unused.
Bien-Gund: And despite all of the terrible tragedies that COVID-19 has brought into our lives, it has also given us opportunities to rethink our models for care.
Porter II: Like increasing access with telehealth visits.
Bien-Gund: And from an HIV testing perspective, we’ve learned that we can decentralize the process. Again, folks don’t have to go into clinics or hospitals to get tested for HIV. They can do it in the privacy of their own homes.
Porter II: That is a huge point. That makes me think this information should also be made available to high school students, especially because they are learning most of what they know about sex from porn and then showing up to college as adult teenagers with minimal information about how to protect and enjoy themselves.
Bien-Gund: I completely agree. At-home HIV self-testing is just another example of how we can empower people with the information that they need to maintain their sexual health. Much like pregnancy tests, they do not lead to riskier behaviors, should be widely available, and have been shown to increase one’s linkage to care and preventative services. And during this period of reduced sexual health access, increasing testing options for at-risk people is essential.