Terri Wilder: Thanks for speaking with me today.
David Hardy: My pleasure. I’m happy to talk about this publication.
Wilder: To start, can you tell me how this study came to be?
Hardy: Certainly. As you probably can tell from the publication in Sexually Transmitted Infections, this is a community-based survey that has involved almost 2,400 persons living with HIV from around the world. The thing that really attracted me about the survey was that it was including not just people in the U.S. or Western Europe, but also persons from South Africa and Asia—really, a much more global look at persons living with HIV than anything I’d ever seen before.
I think that’s some of its most important value. It looks at both a U.S. population and a Western Europe population, which have been frequently studied for lots of different sorts of patient-related outcomes, but this one includes really important information from many parts of the world.
How HIV Stigma Reduces Viral Suppression Rates
Wilder: The paper states, “Despite global targets to eliminate AIDS as a public health threat by 2030, about 14%"—which is about 3.5 million—"of the 25.4 million people living with HIV on treatment are virally non-suppressed.” For some people, it may be hard to understand how it’s possible that we have anyone that is not virally suppressed. Can you explain why that might still happen?
Hardy: That sentence really kind of grabs your attention, and lets you know that 3.5 million people are virally non-suppressed—and that’s just an estimate. In the U.S., we can look at it in a different way and say that, right now, about 58% of persons living with HIV have a suppressed viral load—which is a greater percentage than those who are non-suppressed. But, of course, some people are undiagnosed and some are not in care. This paper is looking at just the ones who actually are on and have been prescribed antiretroviral medication, and are suppressed.
The fact of the matter is, from the medical side, we oftentimes look at the current regimens, that are commonly used and recommended by our guidelines around the world, as something very simple and very easy. “Why isn’t everyone who is living with HIV on one of these regimens, and why aren’t they all suppressed?”
When you really turn it around and look at it from the side of the person living with HIV infection, there are lots of reasons that I’ve been exposed to over my almost 30 years of caring for persons with HIV, the last 20-plus being with [highly effective] medication available.
It can be a structural situation, where they can’t afford them because they have no insurance support. It could be that they have run out of medication and can’t get it again for reasons caused by the healthcare system. But oftentimes what I hear is it’s because they just forget.
Why do people forget their medications? Well, it’s because we oftentimes don’t think about the fact that while HIV has become a chronic, treatable medical condition, it also carries a lot of stigma—much differently than lots of other chronic, treatable medical conditions, like high blood pressure, diabetes, and high cholesterol, conditions that are commonly treated in billions of people around the world today.
The fact that the stigma of HIV is always a part of what many people are coping with, taking that one pill once a day that we think should be so easy and simplistic oftentimes is a reminder of something that many people just don’t want to think about. It’s also a situation that requires that they divulge their diagnosis to others if they have a bottle of pills in the house, or they are taking pills in a situation where others may find out.
The fact that they feel uncomfortable either having the pills in the house, taking the pills on a regular basis—even once a day—acts as a very important stigmatic factor for why people don’t take their pills. Of course, they would rather just forget about it. They’d rather pretend it’s not there and not have to take that pill a day as a reminder.
So, I’m not surprised that there are many people who are prescribed medication, who are in care, and don’t always take the medication routinely—and, therefore, do not have suppressed viral load.
Can a Conversation Really Lead to Better Health Outcomes in People Living With HIV?
Wilder: Let’s talk about the Sexually Transmitted Diseases study. What were the objectives of the study?
Hardy: The study is based on the Positive Perspectives questionnaire, a survey that has asked lots of different questions and included many different patient-reported outcomes.
This particular paper looked at whether or not the individuals had a conversation about U=U with their health care provider, whether that be a physician, a nurse practitioner, a nurse, a physician assistant—whoever was responsible for providing them their antiretroviral medication.
The whole campaign of U=U, undetectable equals untransmittable, is that undetectable viral load has been proven to prevent the transmission of HIV through condomless sex.
What we were looking for in doing this analysis was to see whether we could correlate some positive health outcomes with the healthcare provider having that conversation and telling the person living with HIV about what U=U is, and what it means. What the study did was evaluate those individuals that said, “Yes, I’ve had a conversation with my health care provider about U=U,” or, “No, I haven’t had this conversation,” which was a second group, or “I did not have a conversation but I already know about U=U,” a middle group indicating that there was knowledge about U=U, but it didn’t come from the health care provider.
The important thing, going beyond that, was to see the effect of having that conversation with the healthcare provider, in terms of the health outcomes.
The healthcare outcomes were surprisingly positive for those persons that had that discussion with their healthcare provider, in terms of the proportion of persons who were undetectable by self-report about adherence, being able to say they were in the best health they thought they could be, and also being able to disclose their HIV status with sexual partners.
Wilder: When you look at the analysis of the data from the Positive Perspectives study, as you mentioned, some of the favorable health outcomes were related to viral suppression, but also sexual health and overall health. Was there an impact on mental health?
Hardy: Yes. One of the things I like about the Positive Perspectives survey is that it has covered many different areas of patient-reported outcomes that oftentimes have only been covered in subsections; physical health, mental health, and sexual health are all together in one questionnaire. There’s opportunity to correlate those areas also with medications being taken, being taken regularly; and knowing about whether the person’s medications are working, in terms of self-reported undetectability; and put to the test the patient perspective on many different aspects of living with HIV and taking medication for it.
Wilder: In terms of favorable health outcomes, did the analysis show any difference in terms of gender or age?
Hardy: It did. The thing that was most striking to me was that, overall, about two-thirds, 66.5%, of the respondents to the survey said they had ever discussed U=U with their health care practitioner.
The thing I also found interesting was that, in terms of breaking that down from place to place around the world, the highest was actually in Northern Europe. I believe it was Switzerland, Central Europe at about 87%, and the lowest was in South Korea at only 38%. So there was a demographic difference around the world as to how often this conversation occurred.
There was also important information about the fact that among men who have sex with women, those individuals had the lowest percentage of reporting that they had ever had this conversation about U=U with their primary care provider.
That was sort of a telling and sad thing, that men who have sex with women who are HIV positive and on medication—heterosexual men, that is—have only about a 57.6% chance of reporting that they had this conversation about U=U with their primary care provider. The chance of reporting was much higher among heterosexual women. It was also higher—in the highest—among men who have sex with men, especially those in Europe and then, secondarily, in the United States.
Lessening HIV Stigma Through ‘News You Can Use’
Wilder: Can you talk about the influence of a health care provider having a conversation with a patient about U=U, versus the patient seeing a message somewhere else, like on a bus or in a pamphlet?
Hardy: I like the way that question is asked, because this really brings home the importance of what this study was all about: Personalizing the provision of antiretroviral medication, along with the provider of the medication sharing with the person taking the medication a very important and, in some ways, revolutionary way of thinking about the benefits of antiretroviral medication.
As a provider, I have found myself oftentimes focusing on telling my persons who I care for with HIV, “Your viral load is undetectable. Your T cells are here. All your other blood tests look great.” Blah, blah, blah.
But, you know, when I think about it from the perspective of the person taking the medication, it’s: How does this information really benefit me? How does it really make me or make my life better? I know my numbers are good. I know I feel good. But how is this really going to change the way I enjoy and live my life?
What this study looks at is that intimate relationship between care provider and person coming in for care. That’s a very important sort of transmission of information. It gives the person who is taking the medication what I like to call "news they can use," meaning that they can take that information from their primary care provider about U=U and say, “Wow. I can have sex without condoms once again—like, perhaps, I did before I became HIV positive,” or for the first time, for many people. Those of us who grew up since HIV started, we haven’t had sex without a condom for a long, long time. And now you can do that again if your viral load is undetectable.
The incentivization of what this offers people who are living with HIV and taking their medication is tremendous, because not only does it tell them about their sexual life, it also tells them that they are not social or sexual pariahs, that they are no longer at risk for transmitting HIV to their sexual partners—some of which I’m sure they’re very much in love with, some of which they’re simply having sex with.
The important thing is that the stigma, again, that goes along with being HIV positive, has now been lessened. It has been significantly lessened because that feeling of “I’m going to hurt my sexual partner with this virus” is no longer there. That has a tremendous self-esteem building effect on people who are HIV positive.
On the other hand, if someone sees a billboard or hears a message that says U=U and they find out what that means, the thing that they don’t get from that, that they would get from the intimacy of discussing this with their healthcare provider, is a conversation about some of those important questions.
That’s something that oftentimes, as health care providers, we don’t think beyond. We get hooked into viral load, T cells, other tests that are taken. “Hope you’re doing well. Are you taking your pills? You’re taking your pills. I’ll see you next, you know what? In six months.” U=U provides a wonderful opportunity for practitioners who have prescribed HIV medications something else to talk about, something that’s really going to help patients better understand how being adherent to their medications can make their life better.
Strategies and Tactics for HIV Health Care Providers: Mastering the Message
Wilder: What are some strategies for encouraging more HIV health care providers to discuss U=U with their clients? Are there different strategies for encouraging non-HIV specialists to engage in the conversation around U=U, when they may be thinking, “Oh, I’m going to refer this person to an HIV expert, they’ll handle it”?
Hardy: In health care today, we oftentimes get into these 15-minute or 20-minute appointments, patient after patient, either in a private practice or in a clinic. We don’t stop and think, I’m going to walk in there. I’m going to tell this person for the 50th time that their viral load is undetectable, that their T cells are 1,050, that all of their other laboratory tests I do for safety reasons are normal. How can I make this more of an interesting—and perhaps remarkable—visit with my patient?
Well, I can tell you about U=U! That’s something that I can try to explain—the science behind the studies. But is that really what’s interesting for the patients? No!
What they need to know is what the studies now tell them about how they can live their life. Once the information about U=U is shared with someone who is HIV positive, the normal next question is, “Hey, Doc, does that mean I can have sex without a condom like they did in the study and not worry about transmitting the virus to others?” That’s the question the practitioner needs to be ready to answer.
In my experience, that’s the question that many practitioners are not ready to answer. It puts them into an uncomfortable situation. Therefore, they avoid the conversation altogether. They avoid U=U altogether. This is a long way around saying they’ve got to practice.
Health care practitioners need to practice so that when they share this information, they are ready and willing to answer the next question—“Doc, can I have sex without a condom?”—with, “Yes, you can. These studies prove yes, you can. And I want to let you know that these studies also showed that there was still transmission of other sexually transmitted diseases. Use a condom and not be at risk for an STI, or not use a condom and potentially be at risk. It’s your choice.”
That’s something that really empowers the person who is asking the question to say, “Hey, when I’m with my intimate, monogamous partner, we don’t use condoms because we’re both committed and monogamous. But as oftentimes happens, if another sexual encounter gets involved in there somewhere”—although they have already said they were committed and monogamous, studies have shown that [sometimes] falls by the wayside—"I would use a condom. Because I don’t want to bring home an STI.”
That’s something that we’ve got to be realistic about, really giving people the information that they need to have in their everyday lives.
Wilder: In thinking about strategies for health care providers, you say you’ve got to practice. So I’m wondering, is there an opportunity for role playing in these clinical education conferences or workshops? And what is the role of including U=U in clinical guidelines?
Hardy: That is very important. It was a big deal when the CDC [Centers for Disease Control and Prevention] did post on their website that if a person is undetectable and on continuous antiretroviral therapy they cannot transmit HIV. That was a big deal—and, for the CDC, something that was unheard of in previous discussions of the CDC about sexuality.
Practitioners need to be educated into how to have that conversation and how to translate the data into something that the patient can really understand and see a benefit in.
We struggle oftentimes with trying to give people ideas, concepts, and motivation to remain adherent. And we’ve come up with a million different things: pill bottles, text messages, phone messages. But to give people something that they really feel committed to, that they can have sex without a condom as long as they take my medications on a regular basis, is a very strong motivator for many people to want to maintain their adherence. It gives them a very positive reason that is a link to a very pleasurable part of their lives.
Even if a practitioner doesn’t feel comfortable getting into the nitty gritty about sexuality, they can simply say, “Yes, you can have sex without a condom and you will not transmit HIV as long as your viral load is undetectable.” It’s always important to then clearly follow up and say, “But the studies also showed that STIs continue to be transmitted. So don’t be confused that just because HIV is not going to be transmitted, that other STIs won’t be. Because it’s just HIV that the antiretroviral medications have an effect on.”
It’s good to be honest. It’s good to be open. It’s good to be nonjudgmental about these situations.
Practitioners do best if they are trained. I think this is a great opportunity to do that through role playing as well.
Wilder: This sounds like Maslow’s hierarchy of need. What is it that motivates your client? What is it that helps change their behavior? Frame your messages around that and share with them that, in addition to having condomless sex, their mental health will be better, and their overall health will be better, if they embrace the messages of U=U.
Hardy: That really takes us back to the paper from Positive Perspectives, and that is the real value of that whole survey: It asked for the patient’s voice, for the person living with HIV’s voice. It was looking at it entirely from their perspective and how are they being impacted by what’s going on, in terms of science and scientific advancements in the world today.
That’s something that practitioners really need to hear as part of their ability to better transmit information, and also be up to date on the information. For a person living with HIV to come in and present this to their health care provider and have the health care provider try to shoot it down because they’re either unaware of it or because they just don’t feel comfortable with it, even though they acknowledge that it was good science, is giving the patient a very difficult message to try to ingest.
To me, it is really incumbent upon persons who write prescriptions for antiretroviral medications to be educated about this information and to hear the patient’s voice, and to share this information very proactively and be able to say, “You know, here’s another good reason why to take medications every day.”
Sometimes I think patients take their medication to become undetectable so that I will be pleased at the fact that their laboratory tests look good. Then when they feel like their laboratory tests are not going to look good, they oftentimes may avoid even getting the blood drawn or coming in for a visit. So there’s a lot of power that the reporting of nonadherence will have.
This gives health care providers something they can say: “You’re not doing this for me; you’re doing it for you.” That, to me, is a very strong motivator for wanting to maintain adherence. It’s because they get something out of it other than a smile on the health care provider’s face and a pat on the back. “Good job. You took all your pills for the past six months.”
This is something they can feel really confident about, and walk out and say, “Yeah. I am taking all my pills. And I’m having condomless sex and I’m really enjoying it. It’s opened up a whole new part of my life.”
It’s something that health care providers have to learn the science about, have to be convinced of, have to see what the NIH [U.S. National Institutes of Health] and the CDC are saying, in terms of public health and research advances, and then make it work. Take that information and make it work to make patients’ lives better.