Women and minorities often face extra challenges related to preventing and treating HIV, especially for those in a high-risk environment or who have difficulty accessing medical care. Dr. Adaora Adimora describes specific ways to help these individuals have better outcomes. Dr. Adimora is a Professor of Medicine in the Division of Infectious Diseases.
“People should frankly discuss with their partners whether they have been tested, not just, ‘Oh, do you think you have HIV?” but “Have you in fact been tested for it?’
They should ask about other things a person may be doing, like, ‘Do you have other partners? When was the last time you had another partner? Do you intend to have other partners? What’s the status of our relationship? Do you inject drugs? What other things do you do that could cause you to get HIV infection?”
– Dr. Adaora Adimora
- Factors that increase risk for HIV
- Challenges in prevention
- Perception of risk
- Talking to your friend about their risks
- Asking the right questions of your partner
- Challenges to getting and paying for treatment
- Women participation in research
Ron Falk, MD: Hello, and welcome to the Chair’s Corner from the Department of Medicine at the University of North Carolina. This is our series for patients where we talk about HIV. Today, we’ll talk about some of the challenges facing women and minorities related to HIV prevention and treatment, and specific ways to help these individuals have better outcomes. We welcome Dr. Ada Adimora, who is a Professor of Medicine in our Division of Infectious Diseases. Welcome, Dr. Adimora.
Ada Adimora, MD, MPH: Thank you.
Factors that increase risk for HIV
Falk: Throughout this series, we’ve talked about PrEP. We’ve talked about our ID clinic, and treatment and staying healthy. Sometimes there are greater challenges for some individuals for actually making the best choice for preventing or treating HIV. What are some of the factors that makes one individual more vulnerable to HIV risks in the first place?
Adimora: Well, that depends. Throughout much of the twentieth century, a lot of epidemiology was what was called “risk factor epidemiology.” There was a lot of—and there still is—a lot of emphasis in epidemiology research on the individual factors and the individual things, the characteristics of an individual that placed them at increased risk for having any given disease.
Falk: With respect what are some of those risks?
Adimora: Some of those risks, for example, are who you have sex with, the types of sex you have, all of those things are associated with different risk. In addition, the other major risk characteristic is the environment—the situation in which the person finds themselves.
If you’re in a situation where a lot of people have HIV infection around you, and it’s untreated, then you’re certainly at substantially greater risk than if you have very risky behavior in a situation where no one had HIV infection. If no one around you has it, you cannot get it. If no one you’re having sex with has it, you can’t get it.
On the other hand, if you’re in a situation where lots and lots of people have HIV or most people have it, it’s obviously going to be considerably easier for you to get it and much more of a challenge for you not to get it. One of the things that turns out is important, is not only individual characteristics, like the type of sex you have and whether you’re using condoms—and these things are important—but also, your environment, if a lot of people around you are at risk.
Also, what are your partners doing? You might not be doing anything particularly high risk yourself, but if your partner is doing something that puts them at high risk and they get HIV infection, and they don’t know it and you don’t know it, you are vulnerable to getting HIV infection. Those are some of the issues—that is, the environment and what’s going on in a person’s environment.
Challenges in prevention
Falk: Right. You actually specialize in this unique challenge in barriers that confront women and minorities when it comes to HIV prevention and treatment. Let’s talk a little bit about prevention first, and what are some of these challenges for women and minorities?
Adimora: That’s an interesting question. We could look at some of the macro issues and then we can look at some of the medical issues. First of all, there’s PrEP, pre-exposure prophylaxis for HIV infection. What that consists of right now is a medicine called Truvada, it’s a combination of two medicines used to treat HIV infection, and actually has been used for treatment of HIV infection for many years. It’s been demonstrated that that combination drug can be effective in preventing people from actually getting HIV infection when given to a person who does not have it but is susceptible to getting it.
It’s quite effective, it’s especially effective for men. It’s also effective for women, but it’s important to take it every single day. As it turns out, the tissue levels in the vagina and other parts of the female genital tract are not as high as they are in the rectal tissues, which is how gay men typically get it—men who have sex with men. It’s more of a challenge for women since the drug levels are lower in the female genital tract, you need to make sure you get higher drug levels, and you have to be very religious and aggressive about taking it every single day.
Falk: You can’t miss.
Adimora: You can’t miss doses, so that’s a challenge. The other challenge is people knowing about PrEP in the first place. I suspect that perhaps people listening to this podcast may know about it, but my guess is if you went out into the general population, and asked people and did a survey to find out how many people know about this, you’d probably find a certain proportion of gay, bisexual and other men who have sex with men who know about it, but I bet there would be a nontrivial proportion of those people who don’t know about it, and a huge proportion of women who don’t know about it. Most women actually have very little information about this. That’s another challenge—having the knowledge that this prevention tool exists.
Falk: What suggestion do you have to solve the conundrum of, there’s a wonderful drug that can prevent HIV infection, especially if used really regularly, and yet, so many people don’t know that it’s there?
Adimora: That’s a difficult problem. One way is making sure that physicians know about it and actually evaluate and screen their patients to see if they are people for whom this drug could be useful, so that’s one way: continuing education of physicians. Another thing though is that, many of the people who are at risk don’t necessarily go to the doctor that often and don’t get regular health care, which is a whole other problem. One other way of increasing people’s knowledge is the media. I think CDC, Centers for Disease Control, devotes a certain amount of attention to making information available to people, but I don’t know how effective that always is. There was a big flurry about this in the news cycle when this drug was first approved years ago, but as you know, the news cycle is about four days, and if you miss it, that’s the end of that.
Falk: One of the responses though could be for patients to make sure their physician at least talks to them about their sexual history. We teach in medical school that physicians in training should learn how to ask these questions, but I think in common practice, the vast majority of physicians don’t ask patients about sex history, and even a greater proportion of patients don’t bring the subject up. What you’re suggesting is with some degree of awareness, it would be important for the patient to say, here are some behaviors that perhaps you as a physician should know about it, and there is an approach to preventing HIV.
Adimora: I do agree with that. I think patients should bring that up with their physicians. I hate to put the onus on patients, of course. I think you’re completely right. Physicians do have an obligation to ask about their sexual history, and that’s what we’re teaching people in medical school, but as you said, it does not always happen.
Falk: Although, patients typically ask us about, “What’s my cholesterol? How’s my blood pressure?” As a kidney person, of course I want them to ask, “How are my kidneys?” So, you could suggest that if a person is concerned about having had a risky behavior, at least they should bring that issue to the attention of their doc.
Perception of risk
Falk: Do some people see themselves as being low risk for getting HIV, when really, they’re at high risk?
Adimora: I think that’s often true, actually. Certainly, there are some people who are at high risk and know they’re at high risk—they know that they’re injecting drugs and that they don’t know the HIV status of some of the people they’re sharing needles with, so some people know.
I think it’s an all too common scenario that people evaluate their own personal risk as being low, considerably lower than it actually is. For example, we’ve done surveys in the community and focus groups in the community. It is very common for people to agree, “HIV is a huge problem in this community. People out here have really risky behavior, they’re doing all kinds of things.” They perceive other people as being at risk, but they don’t necessarily perceive themselves as being at risk.
Falk: You’ve already talked with us about the concern that you have to know what your partner may have been up to, because your partner may have been having risky behavior, and even if you’re monogamous, you’re now exposed to that risk that you may or may not have known about that. How to stop the disconnect, then, between the individual thinking they’re at low risk, knowing there’s this drug out there that can prevent HIV, and asking the community to really enforce the idea of at least asking the question, Should I be on PrEP?
Adimora: This doesn’t directly answer your question, but one thing that we did, a few years ago, is we developed a radio campaign in eastern North Carolina and the goal of this campaign was to inform people of the risk of having partners who had concurrent partners. That is, a situation where your partner has other partners aside from you. It was a fun campaign to do, it was a series of radio ads with vignettes and a story line, continuing story line.
That’s actually a pretty common thing. We hear about it in media, partners who are having other partners, but obviously it’s pretty common in the population. The danger is, though, just as you said, that is a situation that can help spread HIV infection throughout a population more easily, because people are connected by these various partners. In addition, it is a risk for the person whose partner has other partners.
So, the goal of this campaign was to educate people about this, and to also educate them about the dangers of it related to HIV and STDs. In the course of this radio campaign, we talked about the importance of condom use, but we didn’t talk about pre-exposure prophylaxis, because at the time that we did it, PrEP didn’t exist, but were we to do it again, I definitely would insert that in the campaign. That was the goal—stick to one partner at a time and make sure your partner does as well.
Falk: Make sure you get tested along the way.
Adimora: Make sure you get tested and make sure you use condoms.
Talking to your friend about their risks
Falk: If someone is sitting there listening to this podcast, and knows they have a friend or loved one who is engaging in risky behavior but does not understand that they really are at risk for getting or spreading HIV, what would you suggest that friend do or say to that person?
Adimora: I think that their friend could gently suggest that they evaluate their activities and their situation, and the consequences of it. This could be a little controversial I guess—it could break up people’s partnerships and marriages—but if somebody has an awareness that somebody’s partner or husband or whatever, is stepping out on them, they could suggest that they get HIV testing. If they’re comfortable talking about that person’s partnership, they could suggest that that’s a risk for them to get HIV infection. As I said, to get tested, to think about using things like PrEP, to get tested for other STDs—those are some things they could do.
Falk: At least getting tested would be useful. As you pointed out, there could be other sexually transmitted diseases in addition to HIV.
Adimora: Another thing that would be important for them to do—because sometimes people don’t want to know whether or not they have HIV infection—a big thing to point out would be, that HIV infection today is very, very different from what it was in 1990. It is still a serious disease, but it certainly is a treatable disease. It’s relatively easy to treat—there are one pill combinations that you can take. You can live a long and successful life. It’s really very different from what it was in 1990. That information is something that may motivate people to get tested, I think.
Falk: An ounce of prevention is worth a pound of cure.
Asking the right questions of your partner
Falk: Outside of a monogamous relationship, in an ideal world, what are some things that a person could do before engaging in sexual activity with another person?
Adimora: There are several things they could, and should probably do. One of them is to know their HIV infection status. They should frankly discuss with them whether they have been tested, not just, “Oh, do you think you have HIV?” but “Have you in fact been tested for it?” They should ask them about other things a person may be doing, like, “Do you have other partners? When was the last time you had another partner? Do you intend to have other partners? What’s the status of our relationship? Do you inject drugs? What other things do you do that could cause you to get HIV infection?” That’s the first thing, is making sure that the person has had a recent HIV test, knowing their activities, and certainly, the person themselves should know their own HIV infection status. If the person does have HIV infection, then the individual should think of PrEP as an option. Finally, of course, they should use condoms.
Falk: Safe sex practices are really required.
Adimora: Right. I want to make it clear that trust is not enough. You should use condoms.
Challenges to getting and paying for treatment
Falk: Dr. Adimora, you recently testified to Congress about the skyrocketing cost of one of the medications used to treat HIV, Daraprim. Certainly, the cost of these medications can be a huge burden. What can help?
Adimora: For individuals, UNC is great in terms of providing help for patients with pharmacy assistance programs so that the individual, the patient can get access to the medicine if they have no insurance of any type, commercial insurance or Medicaid.
Then there’s the larger societal problem, which is what I assume you were getting at. How is it that drugs can cost so much in the first place? HIV is the canary in the coal mine for other diseases. The price of drugs in general is an enormous problem, for cancer and other things as well. I don’t know that there is actually an easy fix for that, other than evaluating and changing the laws that govern drug development and drug pricing in this country. One other thing that would be a major help to people is if everyone had insurance. It would help our hospitals to stay open in North Carolina if patients could actually have payers for their care. It would enable people to get access to medicines so they don’t spread infection to other people, so that they don’t end up getting sick and ending up in the ER. So, there are a bunch of things—changing the structure of drug development and drug pricing in the nation, which takes an act of Congress, or multiple acts of Congress probably and the collaboration of the pharmaceutical industry— and also making sure people have access to care in the form of payers for their care.
Falk: What special challenges do minorities face with treating HIV?
Adimora: Minorities face a bunch of challenges. One is, minorities in this country, particularly black people and Latinos and other minorities, Native Americans, are often disproportionately poor. The insurance problem we were just talking about is often a major problem for them. The insurance issue is a problem for many white people as well, so it’s not just minorities, but a lot of people are the working poor, minorities and others. The working poor really get shafted—they’re the ones who are in the insurance gap. Another thing is there’s still an exceptional amount of stigma that’s associated with HIV infection, and then there’s the discrimination that minorities face. This double slam of racial discrimination and HIV-related stigma is highly problematic, and it often prevents people from getting into care. Those are among the big problems that I see minorities facing in terms of treatment of HIV.
Falk: You talked earlier about issues that women face regarding treatment, especially the need to make sure that they take prevention, Truvada, each and every day. Are there other issues that women are challenged with?
Adimora: A lot of the problems that we’re talking about are what I think one would call “syndemics,” where you have a perfect storm of problems that come together, so that many women with HIV—although not all—are minorities, and they’re also poor, and they face the problems associated with those things. Then there’s the gender inequity issue. Those are some of the difficulties that people have in terms of getting to care, getting access to care, et cetera. Also, people have problems with child care—what to do with their children while they’re getting treatment, who’s going to take care of their kids. Another big problem for people, here in North Carolina, in the South at least, is more HIV infection in the rural areas than there is for rural areas in the north. One obvious problem is transportation – we really don’t have mass transit. People may not have working cars or reliable cars—this is a problem for men as well as women, but you can imagine this would be a problem for women.
This is not simply a problem of women, but it’s a problem of poor people. But given this issue of syndemics, poverty and racial discrimination coming together, having a synergistic effect—one big problem is that people who are poor are often working in low wage jobs where they don’t have much autonomy. They can’t simply take a day off from work or a few hours from work to go to the doctor. Lost time at work, for many of them, means lost money. For some of them, it may mean getting fired. If you’re not here for whatever reason, just go hit the bricks. Go ahead, we’ll hire somebody else, we’re not giving you the time off. I actually see that not uncommonly in patients. So, that can be a big challenge for women, but it’s not restricted to women, it’s poor people in general and people who have little autonomy at work.
Falk: So, they don’t have easy access to care in the first place. There are societal barriers that have not been solved.
Women participation in research
Falk: Let’s talk about HIV research and women participation. What are some of the challenges that a woman might have with getting involved in one of your studies, and why is it so important for women to participate?
Adimora: The reason it’s so important for women to be involved in HIV research, and in clinical research in general, is that—news flash, women are not men. So, their physiology, their bodies are different. Much of the time, drugs and therapies work the same way, but there can be critical situations in which they do not. A number of years ago, it was noted that when people have heart attacks, the clinical presentation can be quite different for women than it is in men. It’s really, really important if therapies are to be extended to women, that the research be done in women, to make sure it’s going to work in them and work as well in them as it does in men. There can be a lot of problems in terms of study participation. Among them are things that I mentioned before; those things include transportation, especially if you live in a rural area.
You can imagine that if this is a problem in terms of getting your own clinical care, this is going to be an even bigger problem in participating in research, which is sort of an altruistic venture, rather than something that’s necessary for your own care.
Another problem women often have is, what am I going to do with my child during this four-hour visit? In our studies, we try to alleviate or mitigate some of those problems by doing things like paying for their transportation, in some cases picking them up to bring them to the study, helping them pay for child care, if the study requires a number of hours and they have to be there early in the morning, paying for a hotel. Of course, they need to be compensated for their time, just like you or I or anyone else would want to.
These are all things we do, but these things cost money. It’s important to do them, though, if you want to include people who represent the population you’re trying to treat and generalize the results of the research to. If you really want to get people who look like that population, you don’t want just the most convenient people you can find a lot of the times. But as I said, these things cost money, so it’s important for funders to understand this is why the budgets of some of these studies are higher, but they’re important to do.
Falk: It’s interesting, the National Institutes of Health requires human studies now to include both men and women.
Adimora: They do require that; they need to require that they pay for that and take that into account, given its importance.
Falk: Dr. Adimora, thank you so much for participating in this podcast.
Adimora: Thank you. It was a pleasure.
Falk: Thanks so much to our listeners for tuning in. Stay tuned for next time, where we’ll talk about HIV cure research with Dr. David Margolis and with a study participant. If you enjoy this series, you can subscribe to the Chair’s Corner on iTunes or like the UNC Department of Medicine on FaceBook.
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