How did you find out you were HIV positive? Do you remember where you were?
It was really a coincidence. I was not expecting such a test result. I was still doing my research in anthropology in a rural community in La Paz [Bolivia]. Part of my research was to participate in the coffee harvest with the local people. While doing this, I got an injury on my hand. This injury then became more and more infected. So I went to the lab, because I thought I had a tropical disease, because I was in the tropical part of Bolivia.
My older sister knew I had been -- I am -- a rape survivor. I experienced rape in 1998. She suggested an HIV test, among many others. All of those came back negative that day, except the HIV test.
What year was this?
It was in 2000. It was a total surprise to me, because I didn't expect this test result. All the information I ever had on HIV -- which was not a lot, anyway, in Bolivia -- I never listened to. All the HIV information was referring to the so-called "risky" groups, referring to men who have sex with men, sex workers and drug users. In that context, I thought I didn't have any risk because I was not a member of these groups. I had a partner for nine years. So I thought I was not at risk.
I was also not prepared for the test. I then received a free counseling session. It was a real shock for me.
Who did you first talk to about this?
I talked to my sisters, especially the one who had the idea of doing the test. I blamed her. I said, "This is your fault, because I'd rather not know." But actually, it was really good that she suggested it, because I also was to discover that I [tested] HIV positive maybe three or four years after being infected. This gave me the chance to change my habits and to start treatment early enough; I never got sick, like being in bed. I think I have been HIV positive for nine years now. I never got so ill as to be in the hospital.
Many of my friends in Bolivia discovered they were HIV positive only in the hospital, and only when they were about to die. So my relatively early diagnosis was, at the end, an advantage. But at that moment, I couldn't rationalize; I didn't yet have an understanding of that.
I was very angry, because the information we had been given was that people who had HIV could die in three months. That's really what I thought was going to happen to me. I was so depressed. Even though my older sisters tried to help me and explain it, for three months I was isolated and really ... I didn't know what was going to happen until I decided to talk to my family. I decided that their response was going to determine what I was going to do. If my family ever rejected me, I was going to kill myself. After they responded with a lot of love, I decided to live.
"My parents told me, 'You are our daughter, and we love you and we will love you, three months, six years, ten days ... however long you will live, we will be with you.'"
That's a big test they had to pass! So you told your mother and father?
I told them after three months. My father is a pastor in an evangelical church in Bolivia. He's very well known. I knew this was not what the pastor expects to happen to his daughters. We are three sisters. I am sure no father expects this to happen with his children. So I knew this was going to be a very difficult situation for them to understand, but I had to tell them, because I thought I was going to die. I wanted to explain.
Then my parents told me that they didn't care about what happened in the past, and how I got HIV -- they didn't ask me any questions. My parents told me, "You are our daughter, and we love you and we will love you, three months, six years, ten days ... however long you will live, we will be with you." That really changed my mind. Since that moment I decided that it was worth living, even with HIV.
Did you expect them to say anything different?
I thought they were going to be a little disappointed. I thought they were going to exclude me from the house, because, being in the context of an evangelical community, this could be really shameful for a pastor. I thought they were going to at least ask me difficult questions: How did you get HIV? What did you ever do to get HIV? They were so wise; they didn't ask me these questions. At the end, I told them the story, but in that moment, they just showed me love. I was really expecting that they would reject me, or at least confront me with my mistakes. I felt that I may bring shame to the leadership of my father, because he was the pastor. He is currently still the pastor. That was a really difficult time for me, but they were full of love, and that really changed the response. There was no judgment from them, actually.
Do his congregation and other people in the community know that you're positive?
That couldn't happen at that moment, because we all were afraid to do this. What could be the reaction of the congregation if they knew the daughter of the pastor had HIV and AIDS? Or AIDS, as it was only known at the time. We were very afraid that people wouldn't be able to continue trusting the leadership of my father, and there would be many complications. We didn't tell them for three years. We were not planning to tell them at all, but in those three years, I started to become a leader on the Bolivian Network of People Living With HIV and AIDS [RedBoL], and I started to become a public speaker, first on radio and maybe in some meetings, some small meetings.
At some point I knew I had to confront the issue of speaking publicly about my HIV. I had started speaking on TV, because I was already a leader. We had a family meeting, and we decided that we were going to tell the congregation in 2003. If they didn't react as we expected, we were going to say that they were not real Christians, because a real Christian would not reject. If you follow the example of Jesus, there is no space for rejection, but only for love. We told them, and the response of the congregation was so amazing, something we never expected. The congregation, from that moment on, became the main support of my family and me; they were amazing and they really showed us the love of God.
Did they want to know how you got infected?
I told them in the beginning. I didn't try to keep any secrets. I didn't want to lie. I think for me it was more complicated to have some people who knew I was positive and other people who didn't know, and maybe some people who knew how I got HIV. That was more stressful for me. So I decided I would tell everyone how I got HIV, and I would start telling them that I did get HIV through sexual intercourse -- as 90 percent of the HIV-positive people in the world did -- and if they then wanted to go away, or they wanted to stop being my friends, or they would reject me from their community, then it's their problem.
I decided to do that, and people reacted very well, because when you bring the truth, there is also life. They couldn't deny their own risk, the congregation. Everyone that I talked to afterwards didn't have anything to judge against me, because they were also in those situations of risk; but they were lucky enough not to get HIV. So instead of judging me, people started to support me so much. So I became more and more well known in the media in Bolivia, and internationally, after that.
"If I was bringing shame to the congregation by saying publicly that I am HIV positive, I told them to forgive me, but that is something I had to do."
When you did tell the congregation, did you just stand up in front of the congregation? How did you do this?
I did, after the main message in the service. We talked to the person who was going to offer the message, the meditation, that day; we asked him to prepare a portion on how Jesus treated a woman that was found in sin. [In the story], everyone wanted to stone her, and Jesus said, "Who of you that wants to kill this woman are free of guilt?" Then everyone ... nobody would [stone] her anymore.
We asked him to prepare a portion on this, and after his preaching, I just stood up in the front of the church and I told them, "I have something to tell you." I told them how I came to be in this place. I told them I was living with HIV already three years. I told them that I considered that God, if I had made any mistakes, He did forgive me. I told that I needed their support. If I was bringing shame to the congregation by saying publicly that I am HIV positive, I told them to forgive me, but that is something I had to do. There was no information, and people were dying in Bolivia who didn't have medication. To help these people, I had to be public about living with HIV. I told them that as soon as I started to work with other people living with HIV, I realized how much this could be a mission that God gave me, based on my mistakes, mainly, based on lack of information and ignorance. It was a mission that I was bringing good outcomes from. The congregation said, "Will you forgive us? We were so indifferent with your needs. We didn't ask about your health. We are not working on HIV with our congregation. We have to repent, not you." That was very, very surprising for me and my family.
Wow! What a moving story! How big is the congregation?
It has about 200 members. It has similar congregations in different neighborhoods in the city. So at the end, all the congregations in the other neighborhoods also knew because we sent them my testimony. They all read this and they all were aware of this, and all of them reacted with love.
Wow. Do you think this caused many people to get tested for HIV?
I don't know, because people are still, in Bolivia, thinking that maybe this "won't happen to me," and there is so much denial, even in the government. No. You don't listen to anyone speaking about HIV, except us -- those who are already living with HIV. Our president, our leaders, ignore the issue of HIV and how important it is. We are in a total denial right now in Bolivia. We have started to challenge that with our congregations. Some of them decided to have a special workshop on HIV and AIDS. They said they needed to learn about this. Other people wanted to work on HIV prevention, and others are working with people who have HIV.
Surely they cannot be the same after listening to my story, because I was a daughter of the pastor. Since I was born, the congregation was in my backyard. If anybody had reasons to disobey God's voice, if you want to call it that, it was not me. That's how God's grace operates: He precisely is able to forgive us everything. That's why my testimony is called "Grace for Grace" -- how I did receive grace from God, and I only understood what his grace was about when I got my HIV-positive test result.
What's it like to live with HIV in La Paz, Bolivia?
Well, I never feel rejected or discriminated against. I know there is still so much discrimination going on in the small cities in Bolivia. We have three main cities in Bolivia: La Paz, Cochabamba and Santa Cruz. The groups of people living with HIV are very strong in these cities. We have public leaders who will speak publicly about their status. But in the smaller cities, we don't have these leaders with HIV, and the stigma is bigger there. I know there is so much to do yet. Last week on TV they were asking people on the street, "Did you test yourself for HIV?" A man, about 55 years old, said, "Me? Why? Those tests need to be performed on promiscuous people, not on me. I am loyal to my wife, and I am staying with her," he said. So there is still a lot of stigma.
Bolivia is a small country. We are 9 million people. I am on TV almost every day on different channels with public education spots, and people know me. Some people talk to me in the airport and say, "You are the one who speaks on AIDS!"
It's very encouraging for me to know they are listening to the messages, but maybe there is some cost to my personal life. It's very difficult to be a woman who's living openly with HIV, and expecting to be married. Men here don't want a woman with HIV ... Maybe positive women finding partners is something that is happening only in America.
We are sexist. The region, and Bolivia, is very much a sexist country. Men don't want a woman that may embarrass them. They want a woman that will give them honor, a woman who stays at home. I am very independent and I am speaking every day about this on many stations; some men find that very difficult to cope with.
I have some friends who pretended to be my partners, my partners who, at the end, asked me to abandon this activism in order to continue our relationship. For me, it was more important in that moment to do this work than to stay with these guys. I can tell you: That's the kind of discrimination I did experience. I think they are not prepared to cope with something so public; those issues of sexually transmitted diseases are, I think, something people keep in their homes.
It sounds like it's not only your public HIV disclosure that bothers men. You are a very strong woman who's very active. Maybe they would have problems with you even if you were HIV negative, because you're speaking publicly, taking action and being a leader. Maybe that's even more offensive to many of the men in Bolivia than having HIV.
I think so. It's definitely a gender issue, because men in Bolivia really expect women to be submissive, to only be at home, cooking and cleaning the house. Many of the women had to divorce as they started to work, and because we are having, every year, more and more women starting university.
As a community, women have grown, but men haven't grown with us. So they remain in the place they are. You know, I am so independent: I can be in South Africa tomorrow, and I can be in Geneva next week, and I don't even have to ask my father for permission. I travel most of the time. I travel on business most of the time. I have my own money. As a consultant, I earn my salary, and I earn a good salary, thank God. This is very humiliating for some men; they just can't cope with this.
HIV is an additional thing. They don't really know [that HIV-positive women can still have children]. Having children is a very important cultural fact in Bolivia. At a certain age, you have to have children, even though you are not married. They know I can have children, but they [also] know the reason [I haven't]. They just don't want to confront it. Some people honestly told me, "If you were not HIV positive, I was going to marry you."
Well, that's pretty rude.
I said, "I was not going to marry you, anyway."
It's very difficult.
What do you do for a living now?
I am an anthropologist. I received a scholarship from the WHO [World Health Organization] to study a master course on gender, sexual and representative in Peru. I was living in Peru a year and a half. Then I came back on the commitment of helping the Bolivian units work with people living with HIV, with the knowledge from the master course.
Then I started to work so much with the network, but the network doesn't pay me.
Tell me about the network. What is the network?
The Bolivian Network of People Living With HIV. I'm currently the national chair.
What do they do? How big an organization is it?
We have about 200 known members in all the cities in Bolivia. Because, as we don't do VCT [voluntary HIV counseling and testing], many people are dying without even knowing they are HIV positive. The lucky ones, who discover early enough they are HIV positive, if they are referred to us, they become members of our network. Our network is exclusively for people living with HIV. It's very well known in the region because of its strong activism, in order to get access to treatment.
"What I can tell you about my friends living with HIV in Bolivia is this: Those who are alone, who don't have a partner or a family; they get so depressed and die. Those who live with somebody, with a family or a partner; they survive."
We started this network in 2000. We started demanding that the government actively provide our [HIV] medications (we finally got them in 2004) and we also support the new members. We do capacity building for new members. We work so much with the national AIDS program and the UN [United Nations] agencies. We [take a] stand when any hospital or person discriminates against any person with HIV. We even support foreign people who are in Bolivia and are HIV positive. Our mission is to support people living with HIV.
I am currently the national chair of this network. We have many needs and all my work in this network is voluntary. I am not paid because we have very few resources for some things that are very important. I do this in a voluntary position, but I am hired as a consultant by other NGOs [non-governmental organizations], often not from Bolivia. Like, TEARFund in the UK [United Kingdom]; it's an evangelical Christian NGO. They pay me as a consultant sometimes to try to help them decide on strategies to teach the evangelical churches how to work on HIV. Also, WHO hires me. There are some others. They pay me on another level, so I don't really need to have a job here in Bolivia. Thank God. What they pay me is enough for living right now, because I also don't have any kids.
Do you live with your parents?
Yes, I live with my parents. So then it's very easy for me. I don't want to move. In Bolivia, you only move when you get married, but that's not the reason why I'm staying. I'm staying because I learned to love them and to receive their love. After we knew, my parents, we decided to love each other in a more consistent way and to express our love. I enjoy being with them so much. My parents have a beautiful house. I am thankful with God and them because they are not forcing me to go away.
I think it's very difficult to live alone with HIV. What I can tell you about my friends living with HIV in Bolivia is this: Those who are alone, who don't have a partner or a family; they get so depressed and die. Those who live with somebody, with a family or a partner; they survive. So I don't want to move. I'm OK. And that's also very good for my economic situation, because I don't have to spend a lot of money on housing and things like that.
Are you currently on HIV treatment?
I just started treatment again three weeks ago. It was very difficult because, during my teenage years, I was anorexic and bulimic for four years. My stomach really had been damaged in that time, so I cannot be on treatment for a long, long time. It's really a challenge for me to be on treatment, because my stomach is sometimes very weak, with the toxicity of the medication. At this point, I couldn't respond even more because I had, in November 2006, 224 CD4 cells. I was already worried and I had to start [treatment] again. Thank God, now the medications are available in Bolivia. Still they are not part of the national budget. We received a donation from Brazil and we are buying some drugs with the Global Fund [to Fight AIDS, Tuberculosis and Malaria] money.
Of course, I worry, because these are not sustainable sources of medications. The donation from Brazil will end in 2008 and the Global Fund, I think, at the same time. After that I don't know what will happen, because the government didn't allocate a budget for antiretroviral medications yet.
What meds are you taking now?
I was on Combivir [AZT/3TC] and efavirenz [Sustiva, Stocrin]; I had to stop [taking them] because I had arrhythmia. I stopped in April, in 2006. I now have started again Sustiva and 3TC [Epivir, lamivudine]. I am doing very well. I don't want to move very fast to protease inhibitors because they are not available so much in Bolivia. The donations we received from Brazil are basically first-line treatment. We have only some of the second-line treatment. Really, really, it's very risky to change so fast to protease inhibitors right now.
I hope I will be able to stay on this treatment as long as possible, not to have many [other medical] needs, because still, the medications are not guaranteed in Bolivia. We have to fight. We have to [apply] social pressure, [organize] demonstrations and civil disobedience, with the government -- against the government -- every time, in order to keep them on track, in order to force them to deliver medications on time to the different cities, and to even take the medications out of customs. If we don't do that, they just don't care. So we still have a long battle to make this HIV treatment sustainable in Bolivia.
"We even have the problem that some HIV medications expire in the customs office because they didn't accelerate the paperwork to release the medications."
Are medications free to anyone who wants them?
They are free now, because they come from these donations and the Global Fund, but when I was tested in 2000, I had to buy them. They used to come from the illegal market in Argentina. I used to pay $500 for a cocktail each month. I was paying this amount every month during six months. In Bolivia, that's a lot of money -- maybe not in the U.S., but in Bolivia it was a lot. At that time, I decided to stop the treatment, just because it was too expensive. At that time, I didn't have a job, as I have now. So my parents used to pay this, and it was a lot of money for us.
Do you get viral load tests frequently, and CD4 counts? Are those tests available?
We get them with the Global Fund, but the bureaucracy inside the national AIDS program and its centers for care for people with HIV is so big, so we often face the problem that the kits for CD4 tests are not there in the place where we need them. We have many problems with this, so I can't tell you we are testing ourselves every six months, as we want to. Sometimes there are no kits to perform the tests. So sometimes we have to wait for a long time, maybe a year. Also, we have a lot of problems with customs. With the Global Fund, we buy these [kits] and medications, but they have to be released from the customs office, and the customs office sometimes doesn't understand that this is kind of a donation. Many problems happen there.
We even have the problem that some HIV medications expire in the customs office because they didn't accelerate the paperwork to release the medications.
What about resistance tests? Have you been tested for HIV drug resistance?
No, never. Never. I think none of my friends with HIV in Bolivia, have been tested for HIV drug resistance. I have read about this. I know it's very important. But what can we do? Sometimes we have been taking ... I remember, the first years, in 2000, we used to take AZT [Retrovir, zidovudine] in pediatric formulations, because nothing else was available. Sometimes we had to take what was available. Maybe it was not the perfect dose for our age and weight, but we had to do it.
I can imagine, because of these interactions and treatments, due to the bureaucracy -- I can tell you most of us are, or will be, resistant to the medications, anytime, very soon.
So what's your viral load now?
Viral load, I had in November 2006. My CD4 [count was] 226 and my viral load was 6,000. So it was not that big. Thank God, this virus doesn't progress so fast with me, maybe because I decided to stop drinking alcohol forever when I saw my HIV test, and I never again had any alcohol. I also try to help myself with nutrition. Many people in Bolivia can't do that. We are seeing every day, more and more, that poor people are getting HIV, and they can't even get the basic meals in order to survive. They sometimes eat, but they don't eat nutritious food.
I have many advantages, living with my family and having a job. I can buy food that is nutritious. Maybe my immune system was not as damaged as some of my friends'. I did investigate [getting a resistance test], since I started the treatment, precisely because the [kits] are not in Bolivia yet. They are being bought somewhere in the world; I don't know where.
"We are going to rest as leaders in the Bolivian Network of People Living With HIV only when medications are available from the government and sustainable."
When you first tested positive, do you remember what your CD4 count and viral load were?
We didn't have those tests at that time. I was tested in 2000, and we didn't have those tests at that time. We've only had those tests since 2004. So I only can contrast my CD4 from 2004: I have been between 350 and 200, and I have been moving on those trends. I never got more than 350 CD4 cells.
Did your viral load move at all?
My viral load, thank God, never got more than 20,000 per ml. That's why I think maybe my CD4 does go down -- not because of the virus, precisely, but because I work so much, I travel so much, and traveling is often very tiresome. La Paz, the city where I live, is very high. When I go to New York, for example, I get used to sea level very easily. Then I come back to La Paz and I get sick with the altitude because we are 3,600 meters above sea level. I have many problems when I travel and come back to La Paz. I believe my CD4 cells went down because of that, and maybe if I rested more they could go up.
I tend to do that [travel a lot and get tired] in the current situation, because, in this moment, I can't abandon the fight. We have the medications, but they are not a sustainable thing. We are going to rest as leaders in the Bolivian Network of People Living With HIV only when medications are available from the government and sustainable. Right now, treatment access is not very secure for us, because it's dependent on the cooperation of other countries or the Global Fund, etc. It's very risky.
How did you find a doctor who knew anything about HIV?
Well, thank God, this doctor I'm seeing has been working in Venezuela for some years. He had seen cases of HIV-positive people for at least five years in Venezuela. If you ask me now how many doctors in Bolivia know about HIV treatment or can manage HIV-positive people, I can tell you: There are five. In La Paz, there is only one. This is because HIV and AIDS are still not something that medical doctors are interested in. It's not profitable for them, I think, since the poor people are getting HIV.
This doctor I see, he's a very nice person. He never charges for the time he has spent with us. Fortunately for me, he was working in the lab that I went to, to get tested for HIV. Those medical tests that I did in 2000; he was working right there, so I was referred to him automatically. I'm convinced, I can tell you: If this doctor were not to be in Bolivia, in La Paz, many people would have died five years ago. He's a volunteer doctor, a very committed person, a very special person that really, we know, is someone that -- without his support, many people would have died.
We proposed him for an international award because he's really been doing this work since the beginning of 1990, when nobody wanted to take care of the HIV-positive person. Because he had previous experience in Venezuela, he knew. Now I think some universities are trying to provide more information to students on HIV, but it is very basic, still. We did our research among people living with HIV recently. What we found is that people with HIV sometimes get diarrhea, maybe after five years of being infected. They go to a health center, and they try to find a diagnosis. But the doctors in those centers -- they don't have any idea of HIV, so they just give them some antibiotics, something to relieve their symptoms of diarrhea, and they go home. But then they get sick again in three months, and then they go to another health center. So you can see the stories of people living with HIV getting ill, very, very sick, during a year or more, and visiting these health centers and asking for something: Please tell me what is happening to me? Why am I getting sick and sick again and again? And the doctors and nurses and can't tell them it's HIV.
After the doctors have performed all the possible tests, only in that moment do they say, maybe it's HIV. But at that time the person is already very weak, and sometimes dies. So we are prompting now, the government, to promote VCT [voluntary HIV counseling and testing], because we are certainly, in Bolivia; we are diagnosing people with AIDS already -- not people living with HIV. I think also the culture in Bolivia influences so much, indeed, because people say if you don't feel sick, you don't have to go to the doctor. Only when you feel very, very sick, go to the doctor. Even when people feel a little bit sick, they go to the drugstore and they try to find some solution there, or they go to traditional healers. So every time we speak on TV, we say to the people, "Go and test yourself, even though you don't have symptoms and you don't feel ill." But people tend to deny HIV in Bolivia.
"I think we have to support rape survivors. Because even if the men who rape you don't transmit HIV to you, the rape affects your mental health, and afterwards you start to put yourself at more risk."
Now, another question that I kind of thought was important to ask: You said that you were a rape survivor, and that's how you got HIV. Am I right?
I can't tell you exactly that that happened, because I didn't know the persons who raped me. They were two men. I was going back home, very late in the night. I was drunk. That's not an excuse for men to do that. But I did put myself at some risk. I don't know who these men were.
Then I also had my partner. I don't want to pretend I am such an innocent person who got HIV being raped; I don't really know. But I can tell you; the situation of being raped really affected my mental health. After being raped, I became anorexic and bulimic ... without realizing that was a consequence of being raped. I started to drink alcohol and to smoke, and I started to even practice sex with my partner with no prevention, no measurements. I was in a self-destroying attitude, because I was so depressed for what happened. I never got any support after the rape. I never got psychological support. I never knew I could get post-exposure prophylaxis medications. So I was not very intelligent, mainly, in that moment. Because my sister suggested -- after I told her about the rape -- she suggested that I visit the health center and seek psychological support, and even to test for any STIs [sexually transmitted diseases]. But I was so traumatized with my body, I didn't want anybody to touch me or be around me. So I just pretended that it didn't happen and I just wanted to forget it happen. I think that was the main mistake.
How old were you?
I was ... I think I was 20. Yes, I was 20. That's why I speak now about rape, because I think we have to support rape survivors. Because even if the men who rape you don't transmit HIV to you, the rape affects your mental health, and afterwards you start to put yourself at more risk. And if you get HIV in the rape, because you stop loving yourself, you actually stop taking care of yourself.
That's what happened to me, I guess. Maybe these men are HIV positive. I can't tell you. I don't know who they are. They didn't let me see them. But I'm sure they see me on TV sometimes. Maybe someday they will be courageous enough and present themselves to me. I would forgive them, because I already did that.
My partner, the one with whom I was with for nine years, including the year that I was raped, he died in 2003. And he died in a very strange way. I begged him to test for HIV, but he was a coward. So I can't tell you. Maybe he also was HIV positive. I don't really know very well. But I can tell you that women who are rape survivors definitely are at more risk of HIV.
So what is it that helps you survive all of this? Surviving rape and living with HIV and losing your partner? Is it religion that helps you? What keeps you going?
Well, what keeps me going is the love of God's effect on me that I can see it's an inspiration on my family, and even my friends living with HIV. I decided at some point that I can't change my past. Of course, I did make mistakes. I put myself at risk by drinking so much. But in Bolivia, people drink so much. We don't have so much drug use, but we have a lot of problems with alcohol, and young people drink so much. The day I was raped, I was very drunk. That's why I maybe even couldn't escape. I also speak about this to young people.
"When we started the Bolivian Network of People With HIV, some of our friends died, waiting for HIV medications to come. Some of them died, waiting for the stigma to change. I am able to see the changes in Bolivia now because of my work ..."
I can't change those mistakes maybe, or maybe just not taking enough care, walking alone at 3:00 AM in the morning ... for them it was kind of an indication to do some harm to me. I can't control the future, either, because I don't know when I will die. But nobody knows.
Because I'm HIV positive I may die tomorrow, or other persons who are not HIV positive may live longer than me. So the past and the future, I can't control. What I can control, and what I can put my efforts on, is today. So if I wake up today, I will live this day to the fullest, and I will give my best, and I will make my life useful to myself and to others and maybe be able to change the history in Bolivia.
I am so glad, because yesterday was my birthday, and I am 30 now. I never thought I was going to be 30 with HIV. So tonight I will have a big dinner, with all my friends living with HIV, friends from school ... a lot of people. I want to thank God because I never thought I was going to reach this point. And also I want to thank God for letting me see the changes I wanted.
When we started the Bolivian Network of People With HIV, some of our friends died, waiting for HIV medications to come. Some of them died, waiting for the stigma to change. I am able to see the changes in Bolivia now because of my work; the investments I did, I am able to see, they are bearing fruit now.
Of course, we are not done. We have a lot to do yet. And I will be here to do that until the last moment I am able to do that. Then if I leave tomorrow, or I mean, if I die tomorrow or in ten years, I won't be sorry for my death, because I will know I have been living to the fullest, and I have used my days in the best way I could.
So there is nothing to lose. If I die tomorrow, I did my job. If I die in ten years, I will have the same sensation. If I die, I know I will find God. I am a Christian, as you may guess, and being born in a Christian evangelical family, I believe I will meet God after dying. And He will give me a new body, a body that doesn't suffer with HIV, or any disease. That's why death also doesn't seem so scary for me. If I die tomorrow, I'm okay. And if I live tomorrow, I'm also okay.
Also, I see so many needs in Bolivia, regarding HIV and AIDS. We did change so much in the six years that the Bolivian network exists, but we are not done. So there is so much to do; there is no time to be depressed. There is no time to be ill. We have a lot to do.
Well, thank you, Gracia, for a great interview. You're very inspiring! Good luck with your activism!
Current regimen (June 2009): "I am on my second year of successful treatment with Sustiva (efavirenz, Stocrin) + ddI (didanosine, Videx) + Epivir (3TC, lamivudine)."
"All medications of people with HIV in Bolivia come solely from the Global Fund grant, which will finish in January 2010. We just presented the proposal for the Round 9 and expect it will be approved. If not, we will have some problems with the provision of medications, but the Global Fund assured us that they would continue to deliver the medications for two years should the proposal not be approved."
I have read the comments and I am glad people are reading this and commenting. It is amazing to be able to help others who are so far away with a tool like TheBody.com.
What I have been up to: This is my last time as the Latin American and Caribbean NGO [non-governmental organizations] delegate in the UNAIDS Program Coordinating Board. I also finished a two-year term as a member of the Global Fund Developing Countries NGO Delegation (2007-2009). I have been pretty much unemployed but had some consultancies here and there which gave me just what I needed to survive. My colleagues in the Bolivian Network of People Living With HIV (REDBOL) were facing a tremendous lack of leadership so they re-elected me as the National Chair for the period of 2008-2010, a position which I accepted with love and passion; this keeps me very busy, but it is not a job.
Because of my desire, and certain attempts, to get pregnant, I am now in a situation in which I do need a permanent job and I can no longer be a volunteer activist. I consider that I have done a lot for people living with HIV in my country and my region since 2000, and for the agenda of universal access, human rights and women living with HIV. It is time for me to have a job that responds to future challenges in my life as a human being and a woman, not only as an HIV-positive activist.
God has been good to me and I was able to witness so much change around the world, and for all of that I am thankful. I am thankful for every opportunity to meet amazing people living with HIV across the world and others who work with us.
I have two lovely nieces, daughters of my older sister; and one gentle nephew, son of my younger sister -- babies that only make me desperate to get my own babies. One of the biggest challenges I am facing as a woman living with HIV since 1998, approximately, is achieving my goals of getting married and having babies in a country like Bolivia that denies the HIV epidemic, and where women who speak about their HIV-positive status are rare and not suitable for marriages.
In all of this, I am thankful for every day lived to the fullest. If I have to die tomorrow, I will do it in peace since every moment of my life since my HIV test in 2000 was lived to the fullest.
With love, Gracia Violeta Ross
Updated August 2009
Gracia Violeta Ross Quiroga can be reached via e-mail at [firstname.lastname@example.org](mailto:email@example.com?subject=Re: Your interview in 'The Body Features: Women & HIV').
Gracia Violeta Ross Quiroga co-founded Bolivia's first organization for people with HIV, and travels around the world advocating for HIVers. But it was a long road from testing positive to becoming a global HIV activist. A rape survivor, Gracia struggled to come to terms with her diagnosis and disclose to her family and friends. She comes from a religious family -- her father is an evangelical Christian pastor. It took years for her to tell her congregation. But now, with the support of family, friends and her church, she has found peace with her HIV status and works tirelessly to raise awareness of the epidemic in South America.
Gracia spoke at the XV and XVI International AIDS Conferences in Bangkok, Thailand, and Toronto, Canada. [To read one of her speeches, click here.] She also received one of the Keith D. Cylar AIDS Activist Awards from Housing Works -- and a $10,000 grant she's used to continue her work.
Updated August 2009
Gracia accepting the Keith Cylar AIDS Activist Award in 2007 from Housing Works.
Gracia with another AIDS activist award winner, Deborah Peterson Small, Executive Director, Break the Chains.