Women and HIV: A View from the Prevention Beat
A Conversation with Dr. Patricia L. Gay
At the National Conference on Women and HIV/AIDS in Los Angeles last November, Dr. Patricia L. Gay spoke about her work and findings on why women choose to engage in unsafe sex.
I found her presentation and discussion both fascinating and enlightening since the findings were so fundamental. Yet these findings have not been viewed as an obvious phenomenon with direct implications for HIV prevention.
Many of the women in the audience were able to relate Dr. Gay's findings to our own lives, a powerful indicator that there was something important here to look at with respect to HIV prevention.
In March, through a grant from the City of Los Angeles AIDS Coordinator's Office, Dr. Gay published a manuscript of her findings entitled, "Valuing Women's Decisions: Condom-Use and Relationships Among Adult Heterosexual Women." I interviewed her about the manuscript and became further intrigued by her background and work.
Nancy Wongvipat: How did you get started in the HIV field?
I was very curious about memory and how head trauma and disease impacted memory. I was getting clients who had HIV with dementia, so I traveled down that route and I've been very fortunate in that I've been able to follow my heart in my work ...
I had a wonderful experience where I worked on a research project that interviewed 600 men. I had an initial task of performing the neuropsych assessment and was filled in on their sexual history. It was a turning point in my career from being interested in neuropsychology to HIV disease. Asking hundreds of men about their sexual history, and spending an hour and a half with each one, talking only about their sexual history is very intense. The things that I've learned about human sexuality have stayed with me and informed me to this day.
Nancy Wongvipat: How has this informed you about sexuality?
It's changed my career path in a very profound way. It really helped me to see HIV disease as a lot more than the health outcome. It's about being who we are sexually, but also, it allowed me to understand gay and bisexual male sexuality in a way that I've never understood it. It's just a concept: there's gay and there's straight. It's become clear that there's bisexuality and I've developed a sense that there's a diversity and range of sexuality.
We talk about ethnic diversity and all, but there's also sexual diversity and I've become very clear about that in its details. I really began to see "theirs" and "our" diversities, where we were the same sexually whether being the same in the terms of our values and our longings and fantasies and desires and dreams for ourselves.
It was pivotal in changing the way I saw HIV disease and in changing my career. I began to work exclusively in the area of sexuality with lots of different types of issues. . . . I've worked with clients dealing with rape trauma, with clients describing themselves as being sexually addicted, sexually anorexic, worked with couples, individuals, HIV positive and negatives.
Nancy Wongvipat: You wrote in your manuscript that one of the reasons you started on this path was the discrepancy you saw between your clinical experience and prevailing explanations of the factors involved in consistent condom use.
Yes. I am a psychologist and I have a different point of view than an epidemiologist or a masters in public health prevention specialist. All my clients were women who are HIV-positive and there were feelings that were very powerful.
One of the things was how do you have an intimate, loving relationship and not trust the man that you're with? If you trust the man you are with and he says he's monogamous, then at some point in that relationship you have to accept that it's true. But it can't be intimate if you're always wondering whether it's true or not, or not fully believing that. If you can't have a relationship that's built on trust, then that's not intimacy and that's not a strong relationship.
They all said they conducted themselves in a relationship that followed the norms in our culture. In our culture we said that if you're monogamous, it's a good thing, and a strong relationship is monogamous and they said they thought they had that. They did everything the way they should have and the way the culture says they should have. They dated, discussed their relationship at some point when they decided to be a couple, and made promises. They wanted to believe the promises that he was a good man and then they were infected.
I began to think about why they all seem to have this thread that ran through them about trust, intimacy, love, longing for, closeness, and then being infected. There is another body of literature which pathologizes women that get infected. This literature says that the infected women are weak in the relationship and let the men do whatever they want to, that the men are promiscuous and don't really value their women, and that they don't value the relationship. However, the women would disagree and say that's not the case.
Nancy Wongvipat: Did you see many HIV-positive women in your practice?
Yes. My practice saw women and couples who had a variety of issues. I had HIV-positive gay men, straight women who are HIV positive and couples who have a variety of sexual issues that brought them into treatment. I also did some work in rape trauma-crisis work. So in my practice, all had sex in the theme, either sexual violence with my rape crisis clients, working with gay men and their sexuality and HIV disease, straight women and their sexuality and HIV disease, or couples who have some sexual issues. I had a lens that let me look through the world from a perspective of sexual relationships and the themes that ran through sexual relationships. So I saw things a bit differently than other people who worked in the field of HIV disease because of my work and my type of training.
Nancy Wongvipat: Why do you think after so many years of HIV prevention this idea of looking at sexual decision making from a relationship-dynamics perspective -- in terms of the idea that heterosexual women strive for monogamy and condom-free sex -- has never surfaced?
Much about behavior-change theories does not come out of psychology, but out of public health models, I discovered after reading the literature and hearing the presentations of some of the old guys in behavior-change theory.
For example, most of the models that we use, such as social change and transtheoretical theories, are great at getting to change behaviors that are not relationship-based, such as wearing a seat belt. These behaviors do not have emotional valence. So, the old guard in developing their models came out of public health, which didn't really address issues of relationship and sexuality. There are much less complex ways of looking at things. How do you get people to eliminate animal fat from their diet? It is very different and very uncomplicated compared to how do you get people to change their sexual behaviors.
I think it has something to do with our culture -- we have a very difficult time speaking of the obvious, that HIV and condoms are about sex. We always talked about it as a health issue. HIV disease is a health issue and it is very much a consequence of who we are as sexual beings. Those of us who dealt in prevention had a hard time addressing who we are sexually. So the obvious piece was always left out because of our cultural values around sexuality and because we first started looking at this disease in the context of gay men.
The prevention community, which was primarily heterosexuals, had a very difficult time looking at the issue of gay sexuality. It was scary, so we backed off and only talked about the health issue. So the core, the heart of how to do the most successful prevention could not be addressed, could not be examined because we couldn't do the work. We couldn't go there around our sexuality and how we manage our relationships. So, it was much easier to look at the unique models of behavior changes or go to other areas that had nothing to do with intimacy.
Nancy Wongvipat: Current prevention interventions are focusing on self-efficacy and skills-building, such as negotiating condom use. Do you think these interventions were an attempt in getting at the relationship issue?
Yes. You do have to teach people how to talk about using condoms. I think that was good. However, everything has its time.
The era when women had to negotiate condom use lost its power when it operated under the assumption that women did not know how to negotiate sexual behavior in their sexual relationships. What women told me was that they knew how to negotiate in their sexual relationships and that they weren't victims and damsels in distress. Teaching women how to do that was a good thing, but it lingered too long in a pathology and deficit model -- that there is something we don't know how to do and that somehow our condom non-use was based on some deficiency.
My work came out of a different model. It said that we are not using condoms for a good reason. It may be a bad decision, but it's for a good reason. It's not that we have a defective feeling of self-esteem or negotiating skills, but rather, it's because of some other issues that are involved.
Nancy Wongvipat: What would you say to HIV-positive women in terms of thinking about what led them to be infected? What they can do about it, knowing what they know now in terms of applying their lessons learned to other problems in their lives and relationships?
What women indicated was a challenge for them was changing their sexual behavior in a way that appeared not to be supported by their environment. For example, one of the core assumptions for all the models, no matter which model, is if you're asking people to do something that is not supported by the culture, it won't happen. What women said is that our culture does not support them questioning the value of monogamy. The value of monogamy is at the core of everything from our religious belief to how we conduct our relationships.
So, if a woman says because HIV is so prevalent, we need to use condoms from Day One of our relationship, our culture does not support that way of thinking. Our culture says no, a committed relationship is a safe one. How do I protect myself when I have no framework to support me in saying we must continue to use condoms when all the media messages I've heard are about the value of monogamy? You wouldn't tell a married woman to use a condom. So women are thinking about how to protect themselves and take care of themselves in a way that is socially sanctioned. They can put themselves in a relationship and not have their partner say this doesn't make sense, why are you doing this, we're a committed couple, we've been together for years, how do you now talk about condoms, how do you now bring up HIV disease?
It's very complex but it does translate to more than HIV. It translates to how do you protect yourself from STDs? How do you protect yourself in an intimate relationship where you trust someone but there's always potential for betrayal and misplaced trust? How do we teach women to protect themselves and at the same time, give themselves fully to the relationship? How do you do both? How do you not sacrifice yourself for the relationship and how do you not sacrifice the relationship to protect yourself? How can you hold both at the same time while taking care of yourself and the relationship?
They should not be mutually exclusive. But many times we've trained women to believe that it's either/or. We really have to train ourselves to think differently -- taking care of myself and our relationship. And that's a challenge we haven't been good at.
Nancy Wongvipat: You suggested one of the possible messages to publicize is that people should test early. Can you suggest other possible interventions?
One of the things going on right now is the City of Los Angeles, along with the California AIDS clearinghouse, are putting together a new media campaign. There hasn't been anything in the media on HIV prevention in a long time. It has been a couple of years since you've seen billboards, public service announcements (PSAs), etc., so they are now funding a new media campaign. I have been working in a consultant capacity with the city of L.A. and the state clearinghouse to promote testing, not just condom use.
[The old message] was to know your partner. Getting an HIV test tells you what their serostatus is. In terms of HIV prevention, serostatus is the most important thing to know. What we do know is that women and men stop using condoms. They forget; they run out; they've been drinking; they say they've got a committed relationship. These ads encourage testing very early on to know their serostatus. Not just that you take the test and get the results, but to go in as a couple because women talk about their sexual relationship being about a couple. This is a couples issue for us, and rather than thinking about protecting myself, we think about protecting one another in a relationship.
We're telling women: You are in a relationship; test the relationship. He's telling you all these wonderful things you wanted to hear and you really hope he's the right one, so test the relationship and take the HIV-antibody test. Do that very early in the relationship because once the relationship has gone on for too long, the question is, why now? So get that done immediately.
That allows the women to know how serious he is. He says he wants this relationship but if he says we cannot go together to get the test, how serious is he, really? And if we cannot go together to get the test, then I have some information that is far more important than who he slept with or what her name was.
[Getting the test together] is not the end of it, though. We must go back together and get the results. Test sites are going to be asked to disclose to the couple, not just to the individual. I've had women say that they've gone to test sites and say we are here to be tested and we are back to get back our test results. Test sites are going to have to develop consent forms allowing them to disclose to the couple and the procedures for doing that.
Nancy Wongvipat: Do couples' disclosure procedures exist at this time?
Some sites have them and some are behind the times. Some test sites are still telling people that disclosure to couples is against the law, which it isn't. They simply don't know better. If the test sites don't know better and if our clients don't know better, we have a problem.
The important thing for women to know is get him tested and yourself tested immediately as a couple. Test that relationship. Also, go back for those results and know for yourself. If you want to talk about trust in a relationship -- which all women do -- when you talk about why I don't use condoms because we have a trusting and loving relationship, well, I say let's operationalize trust. The way I operationalize trust is I know your serostatus; I trust that I am safe with you.
I am excited that the city and the state have decided to use my research findings to inform this media campaign. They are no longer saying things like "Respect yourself, protect yourself," as if people who don't use condoms don't respect themselves. They understood the findings. When people read the study they said, "That's me." And that's a real shift in the culture in HIV prevention, because we always said, "That's them," and as long as we said [that] we were going to forever be ineffective and, in fact, do harm.
As long as we marginalize . . . we will never help anyone. There has always been the "I/They" approach and it comes up in a subtle way. We would be wrong in our conclusion because we put something very subtle in our research design. The research design is the way we phrase and order the questions, the way we perceive a thought when we believe that the issue is about "I and they." All the truth will be lost and there will be a falsehood interjected which will derail the value of the work every time.
That's the falsehood in the dichotomy between gay and straight. In homophobia, when we have misguided beliefs about other communities, it's because we come from an "I/they" as opposed to being able to see ourselves in who we're with, to be able to see ourselves in the issue and not hold ourselves out and above. So I think that is the difference in this work and hopefully it will make a difference in other research because it's a conceptual shift for us the researcher, the psychologist, the specialist, etc.
Nancy Wongvipat: Knowing that relationships are not all monogamous, how does the idea of multiple testing within a relationship play a role?
That is going to be a new step for women that we haven't done before. When there is a breach in the relationship -- infidelity or suspicion -- in the past we have talked about it, repaired the breach, and moved on. And the most we got out of it is a breakup of the relationship and a non-lethal sexually transmitted disease (STD).
Now it's different. When there's a breach in a relationship or a suspicion that something's happening, we know in our soul. We're the first ones to suspect. We know the people in our relationship; we know when they change, and when their rituals and schedules change. When there is a suspicion, it's going to be important in that relationship to have a conversation that says that this has happened and my trust has been broken. In order to protect my life, in order to restore peace in our relationship, so we can begin the repair work, we need to retest.
But, of course, it doesn't speak to the infidelity. In terms of HIV prevention, she is doing what she needs to do to know exactly where she stands with HIV disease. She may not know where she stands with her love life but we have to develop the courage and develop the rituals in our relationships that say [re-testing] is the appropriate thing to do.
Nancy Wongvipat: What advice would you have for someone who is HIV-positive, who is in a discordant relationship or who doesn't know his or her partner's serostatus or is considering getting into a relationship?
People who are negative or don't know their serostatus, take this message to heart and say "We need to be tested if we are going to continue on this relationship; we need to know this about one another." For the person who is positive, it's going to force them into making a decision about that relationship: coming forth or not, staying in or leaving, staying hidden or not. It's going to force that and that's going to be a personal decision they'll have to make. Because disclosure is incredibly frightening, it can be dangerous. It takes the relationship to another level. You put a lot on the line.
So in discordant couples, it will have serious meaning. For the person who is negative and doesn't know that their partner is positive and their partner either is unwilling or passively resists the testing, it's going to be important for the person who is negative or doesn't know the status to make a decision about what that means. And we can't make these decisions without having a clear conversation. We always have excuses about why we have not gotten tested; we can't assume that the good excuses are good excuses. We have to say, "No, we must get tested." And as long as you don't get tested, you know that there's a possibility that there's something very important that's being kept from you, and proceed accordingly.
For women and for men, it's going to be important to be mature about this. Sometimes it's going to challenge our attachment to fantasy. A lot of times, we would rather have the fantasy than the truth and it will challenge our ability to stay in that place for very long. We will be able to enjoy the fantasy for a short period of time. Then, if it happens that the person does not want to take the test, we will have to decide whether we want to live in the fantasy and take a chance with our life and our health, or take a chance that perhaps this is not the relationship that I thought it was and move on.
Nancy Wongvipat: Would it be the same message to heterosexual men in terms of implications for intervention?
You know, I haven't done the research . . . but I do believe that men do have similar relationship ideals. I think men value monogamous relationships and I think that men desire to be monogamous and to be in a relationship that is committed and strong and vital.
And from what I understood from the women I interviewed their men would not object to this. The men agree to use condoms and don't argue about it. For the women who've been tested, their partners agree to be tested also. They don't see it as a bad thing when it happens early in a relationship. Men get it and men want to love and protect the women and their relationship. They really do care about us and want to prove that they're trustworthy.
The issue is whether heterosexuality makes a difference. We know from the work of gay men that they are receptive to getting tested and using condoms. No one is using them like we'd like them to. No one is testing at the rate that we would like them to, but the support for condom use and HIV antibody testing is there among both men and women, and that's heartwarming.
A lot of the literature on women and HIV prevention really kind of beat up on men. It says that women don't use condoms because they're afraid of domestic violence, they're afraid that men will withdraw their support of them, and that men will abandon them. I think for some women, that's true, but in my conversations with women, that's not the typical woman. The typical woman is in a relationship with a man that cares for her.
Nancy Wongvipat: What other programs or interventions do you think will be effective in addressing HIV prevention with respect to these issues?
I would like to see a home test kit that's a departure from the one we have now where you mail in the sample and get phone results. I'd like to see a test kit that's patterned after the home pregnancy test kit where you get two in a package because this is relationship-based prevention, not me, myself, alone taking care of myself. So, there's two in a package, urine-based with immediate results.
It accomplishes a couple of things. One, it makes it readily available. People will say I'm self-conscious going to an HIV test site. But they will take a kit off a pharmacy shelf and put it in their basket and walk out the door. It's much more comfortable and you could know in the privacy of your own home. Make them cheap and couple-based so when I meet somebody that I really like and want to see more of, we can both take the test together and know what's going on together.
We know from research already that people will not harm one another with these test results. People would test more frequently. The technology is already there for urine-based screens. The obstacle is getting the FDA to appreciate the importance of it. To get beyond the "Oh, the people are going to be homicidal and suicidal when they get the test results" fear. This hasn't proven to be the case.
Nancy Wongvipat: For the purpose of data collection, how are we going to know how many people are testing positive?
When people go to an HIV test site, no one knows how many people are testing positive, anyway. We only know AIDS data ... So what we will have is a benefit in early intervention for people who test positive.
Now, most people test positive after they have symptoms. This way, we get early testing and early intervention for people who are newly seroconverting. You're testing every year, so you're getting people early into treatment as a potential benefit of this. So that's my fantasy.
And I came up with the idea again in the course of this research and when I asked about the barriers to testing, and they said that walking into an agency that it's hard to do. And even waiting a couple of days [is] hard to do.
Nancy Wongvipat: Any other fantasies?
One of the things I've found in my practice is that those who seem to have the least amount of information and the least amount of access to testing were women ages 18-22, young, poor and uneducated. They are the only group of women who did not test. Those young women are the ones who are not consistently testing and not consistently using condoms. Young women are not particularly using condoms, even in casual relationships.
What I would love to see is more test sites in the African-American community with more visibility and a serious outreach to young women. Also, more test sites in African-American and Latino communities -- and promote them. Many people do not know that there is a viable screening mechanism available to them. If you're a test site, you should be able to do some oral screening. In certain areas with a high incidence and prevalence rate, we should identify test sites that are doing oral screening that match the density of infection with a campaign to make sure that young women are getting the information, because they're not.
A part of the reason they're not getting the information is that we are not really consulting with them... People my age are designing the messages and we really don't understand the culture. We think we do, and we're arrogant in that respect. We try to use their language but we really don't consult them. We use their faces and their images, but we don't consult them on the content. I think it's going to be very important to get to them. We have to get to them and we should have the data and the technology to really deal with this disease.
This article was provided by AIDS Project Los Angeles. It is a part of the publication Positive Living.