(Clic aquí para la versión en español.)
Jesús Aguais has been fighting HIV in his own body and around the world for more than a decade. He is the executive director of Aid for AIDS, a nonprofit group that distributes unused and donated HIV medications to people who can’t access them. Lately, Aguais has ensured that HIV-positive Haitians receive their antiretroviral meds in the aftermath of the devastating earthquake that rocked the Caribbean island on January 12. Compared with Aguais, Stefanía Fernández, the reigning Miss Universe, is a relative newcomer to the fight. But neither she nor the pageant is new to AIDS.
In 1996, the Trump Corporation (it owns the Miss Universe pageant) declared that the fight against HIV/AIDS would be the official social justice platform for each breathtaking beauty who assumed the title. Since then, each Miss Universe has been responsible for being a global advocate for people with HIV, raising awareness of the disease, educating people about the virus and inspiring people to connect to care and to engage in effective prevention. Utilizing its national grassroots infrastructure, the Miss Universe organization is committed to increasing HIV/AIDS awareness by focusing on women’s health and reproductive issues.
Fernández accepted this task as graciously as she received her armful of red roses on the stage in November 2009, when she was named one of the most breathtakingly gorgeous (and did we mention gracious? Lovely? Funny? Smart?) women in the world. And it’s no surprise. The South American beauty has a history of helping people living with the virus.
Knowing the Miss Universe pageant’s commitment to the issue, we at POZ wanted to play a role in furthering the education of the current Miss Universe. But when we asked if we could bolster the beauty’s command of HIV/AIDS, we were pleasantly surprised to discover that Aguais had beaten us to the punch and was already lined up to give Fernández a PhD in AIDS activism. So we asked if we could listen in…
Here, in a conversation that has been translated from Spanish, Aguais and Fernández, who were both born in Venezuela, discuss AIDS advocacy, stigma and prevention.
Jesús Aguais (JA): Stefanía, did you know if you won the crown that HIV would be your social awareness platform?
Stefanía Fernández (SF): Yes, I heard it from Dayana Mendoza, Miss Universe 2008, since she also is from Venezuela. The newspapers were always reporting that she was working on an HIV campaign, so I knew if I won I would assume that commitment.
JA: And what does it mean to you, now that you’ve been working on it for a few months?
SF: It has been a wonderful experience. In fact, when I was Miss Venezuela, I worked with a church on an educational campaign for [HIV] prevention. I was pleased to learn that the Miss Universe organization [gave] me the opportunity to continue what I was doing in Venezuela.
JA: What did you know about HIV before you became Miss Universe?
SF: [I had] the basic knowledge that you get at school about the illness, [which I learned while] working with the church. They sat me down, and I took some classes. Now I have a more global comprehension.
JA: Since becoming Miss Universe, what has been your experience as an activist?
SF: I spent time [at Aid for AIDS] with people who live with the virus. I also commemorated National HIV Testing Day. I got tested [for HIV in public].
JA: What message did you want to send when you got tested [publicly for HIV]?
SF: I wanted to be a role model. I wanted to show the people that taking the test is easy and simple, that it takes less than five minutes, and that the important thing is to detect the illness at the beginning—because it can be treated, and you can live a full life.
JA: And what did you feel when you took the [HIV] test?
SF: I was thinking, “Will they draw blood?” But no, it was really simple, they just rubbed my gums, and they took the sample away. Later they told me [the results were negative], and I felt really good and very proud of myself for [being an] example and for telling the world not to be afraid.
JA: Do you think there is stigma or discrimination associated with HIV and AIDS?
SF: Yes, there is stigma, especially for people of color and gay people. I really think we should have campaigns that say, “Listen, on top of having the virus, these people are being stigmatized, which makes matters much worse.”
JA: What is the worst perception that people have about people living with HIV?
SF: The worst perception is that many people believe or say, “[People] have [HIV] because they deserve it.” That is not true; [people] do not have it because they deserve it. [Everyone needs to] realize that [people living with HIV] are human beings, that they feel and suffer just like you and I. They just need our help, because unfortunately they carry the virus.
JA: What do you think about Latinas becoming a larger proportion of the [HIV] statistics?
SF: It is really worrisome. I have [worked] with the Latino Commission on AIDS. They [are] very worried because they realized that for the past two years the statistics have increased a lot. More than anything, the people in government in Latin America should become aware and take this issue seriously and make it part of their political platform to see how this can be attacked.
Now, I would like to learn more from you. What is the main challenge that women and children face in relation to HIV/AIDS prevention around the world?
JA: There are many gender-related differences [that contribute to women and children being vulnerable to HIV, such as]: domestic violence and abuse, power [imbalances], financial inequality, [especially in families in which] the woman stays at home and the man is the provider. “Machismo” [is also a problem] in Latin America. Women [are at risk] due to [the fact that their husbands have to] go from one city to another to get work. The man [leaves his home for work, has sex with sex workers], and when he comes back home, he infects the woman [with HIV]. There are many men who have sex with other men [and don’t tell their wives or girlfriends]. Lack of education, lack of access [to health care] and lack of women’s rights [also contribute].
Unfortunately, we continue to see children born [in the developing world] with HIV when that is something that is preventable. There are many more people on treatment and many successful models for the prevention of transmission from mother to child, but there is still a lot to do.
SF: What inspired you to launch Aid for AIDS in 1996?
JA: It happened out of necessity. Aid for AIDS was born at a time when there was [limited] access to treatment. Before ’96, there weren’t any really effective drugs. We’ve had treatments since ’87, but nothing compared to [the current AIDS drug cocktails]. When the cocktail came out, I was in New York and I realized that meds [that were unused because a person switched pills or passed away could be donated and] sent to Latin America or developing countries elsewhere. That is how Aid for AIDS was born, to provide direct assistance to people with HIV [who could not get HIV meds].
SF: What are some of the hardest obstacles you face as an AIDS activist?
JA: The main obstacle is to keep the issue of HIV and AIDS in the spotlight to make it important to people [and to remind people of the facts and the real issues]. The medications have improved the quality of life [for] people living with HIV, but they have also created a false sense of security. People think that because there are antiretrovirals, that they can have unprotected sex. [Too many people] are engaging in risky behaviors [without having taken an HIV] test.
SF: Your organization was one of the first AIDS organizations to respond to people in need after the earthquake in Haiti on January 12.
JA: When we heard about the earthquake in Haiti, we got together with a group of organizations led by my friend Charles King, president and CEO of Housing Works, which already had a presence in Haiti. We agreed to start sending [HIV] medications immediately. Housing Works, along with other organizations, brought in a team of doctors to make sure the meds we send get to the people.
SF: What would you like people to learn about AIDS?
JA: I want them to learn that HIV and AIDS are two [different] things. That HIV can be prevented, and AIDS can be prevented even more. I want them to learn that people with HIV are next to them—their parents, sons or daughters, their neighbors. [I want them to see them as] people with rights—that it is important. And that people [living with HIV] are part of society, just like everyone else.
I want them to know that they should not be afraid of getting tested [for HIV], because not knowing is the worst decision. [I want people to know that] there are medications that allow you to have a good quality of life and to continue having the life you had planned.
SF: People do not feel the need to be tested [for HIV], but the reality is that they do need to [get tested].
JA: Yes, and that is one of the problems we have, because the profile of people [living with HIV] has changed. Yes, vulnerable populations [are at risk for HIV], but there are also people not in vulnerable populations being diagnosed with HIV.
SF: How did you get involved with the Miss Universe organization?
JA: We met [the organizers] when we invited you to our [Aid for AIDS] cocktail party. We hope from here we start a long-term campaign that you can be involved with, that you can take the messages of prevention and anti-stigma and discrimination to the rest of the world.
SF: I want to make myself available. You can count on me when I finish my reign. Besides, we are both from Venezuela.
JA: Great, thank you.
SF: Not so fast, you’re not done, not yet…. [Laughs] How do you envision that I can [best] inspire others, in relation to HIV/AIDS, in my role as Miss Universe?
JA: You represent something very important. All girls, especially in Latin America, want to be Miss Universe. What you represent is the power to change positively or negatively what people think about HIV.
You have the power, especially among young people, to eliminate the stigma and discrimination. There are many children living with HIV in public schools that haven’t told their classmates for fear of the stigma. What you say about HIV, when you talk to young and teenage girls, will have a deep effect on them.
You have in your hands a tool you can use to do good or bad, and I know you’re doing good. I know you started with yourself, by getting educated and tested, and I congratulate you for that. I love your interest, and even though this was a platform that was assigned to you, you already feel like a true activist, especially since you are thinking how to continue your work in the future.
SF: I will continue with this work. All the time I’m reading the statistics, and actually it is surprising, because a lot of people don’t take this problem seriously. They think, “It’s not my problem, it’s their problem.” But HIV/AIDS is everyone’s problem. How do you think we can end the stigma?
JA: Stigma begins with language, when we call things by names. We use a lot of incorrect terms that unwittingly feed the stigma [around HIV/AIDS]. What stigma does is separate [people from] something that [they] belong to.
It is said that HIV is contagious, that you get contaminated. HIV does not contaminate, it’s not contagious. HIV is transmissible. [Reducing stigma can be] as simple as that, using the correct words.
We don’t say sidoso [a derogatory term in Spanish for someone with HIV/AIDS]. We don’t say “a person ill with AIDS”; [we should say] “a person living with HIV.” [We don’t say] “an AIDS patient”; [we should say] “a person living with AIDS” or “a person living with HIV.”
If we could [correct] the language in these simple ways, we would begin to decrease the stigma and discrimination.
SF: What should my generation do in the fight against AIDS?
JA: You [and your generation] are facing a challenge. When I was your age, AIDS carried a sense of urgency, it was a matter of life or death. There were no medicines, and people would die. Many of my friends died. I can think of at least 20 people close to me who have died of AIDS. That was the experience of many people [of my generation].
The challenge you face is how to talk about HIV as a genuine problem [while, or at the same time, encouraging people] to integrate [people living with HIV/AIDS into their communities]. For example, I can introduce you to a Somali girl who was adopted by Aid for AIDS—not by me personally—when she was 11 years old. She is now 21. She was born with HIV, she has a child that is HIV negative, and she has been accepted by the community.
How do young people encourage others to accept kids who were born with HIV and who are now teenagers or young adults? How do [you address the issue of] youth that transmit HIV due to lack of information? How can [you encourage people to] talk openly with their peers [about sex and HIV]? And how can you help [HIV-positive people] feel that they have the love and support they need to move forward?
SF: There are a lot of young people today that don’t seem to care about their peers or the person next to them. We need to think about what’s going on, about the reasons why they feel bad. [This is true] not only for young people, but for people around the world.
JA: Nowadays a young person [who tests positive] might have more social support, but it’s important that if he or she is in Latin America or in a small town in the United States, that they [know that they] can go to their peers and talk—and that their peers can provide emotional support.
SF: What is your message for the whole world?
JA: That HIV has not gone away, that AIDS is [still] present. It’s a new era [in the fight]. We really need to eliminate the stigma and discrimination. [And, of course] there are still gaps in access to treatment that need to be filled.
If we protect ourselves and we build prevention campaigns that are strong, clear and effective, we will not only decrease HIV infections, we will decrease [other] sexually transmitted infections, unwanted pregnancies and teen pregnancies. [People need to hear that] there is a lot of work to do, so [they should] get involved.
And finally that HIV affects everybody. Everybody should be concerned!
SF: Thank you very much.
JA: Oh my God, you have potential! What do you think will happen with your role as an HIV/AIDS activist once you are no longer Miss Universe?
SF: I want to go [back] to my country, to see how I can help. [In the United States] I have had so many teachers that have helped me from so many wonderful organizations that I’ve gotten to know. I hope they will [continue to] help me in my country.