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.
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.
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.