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HIV/AIDS Resource Center for Women
Michelle Lopez Alora Gale Precious Jackson Nina Martinez Gracia Violeta Ross Quiroga Loreen Willenberg  
Michelle Alora Precious Nina Gracia Loreen  
Gracia Violeta Ross Quiroga

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What's it like to live with HIV in La Paz, Bolivia?

Gracia accepting the Keith Cyler AIDS Activist Award.

Gracia accepting the Keith Cylar AIDS Activist Award in 2007 from Housing Works.

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.

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Reader Comments:

Comment by: Herbert (Mogadishu ) Sun., Mar. 22, 2015 at 9:57 pm UTC
Courageous lady!
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Comment by: Jacqueline Torres (Brooklyn) Thu., Feb. 20, 2014 at 10:04 am UTC
Gracia your story is inspiring, I could relate to your story. I'm also HIV positive I was also in a state of shock when I found out my results in 1999 and the reason for that was because I didn't go to the doctor so I can get tested I went to accompany a friend because she felt that her boyfriend was cheating on her so I went to give her support. While we were their I said to my friend I never got tested before now that I'm here I matters well. When we go back for the results in 2 weeks I get the results and the doctor told me it was positive I couldn't believe what I heard. My friends result was negative I requested for a second testing and a third they all came back positive. I didn't want to believe it either because I never consider myself in the risky group category. So I thought... I always been a family woman my strength was God second was my kids I would look at them and say to myself I can't leave them they are still young and the thought of having to think that someone else has to raise them was more devastating for me. I said to myself they are my responsibility to take care of them my job is not done and when they get older I would share my story with them. Working with Harm Reduction has helped me with my ignorance. Many people think that they are not at risk like yourself and me because they are not a drug user or they are not a sex worker or sleeping with a men who's having sex with a men. You and I thought that having sex with one or two guys we might not put our self at risk. Our stories should inspired everyone to use protection at all times because it only takes one person in order for someone to become positive. HIV doesn't discriminate just like drugs it doesn't matter if you are black, white, rich or poor. We are here to educate others how to protect them self because if they don't they would be just like you and I. Someone is out their not caring about someone Else's body or they just don't know about they Owen states. Everyone must get tested
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Comment by: Gary S. (Durban, South Africa) Fri., Sep. 16, 2011 at 6:03 pm UTC
Gracia is such an inspiration! Amazing woman...
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Comment by: fuzzy (nyc) Sat., Jan. 22, 2011 at 11:30 pm UTC
is it possible to live with hiv without medication?
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Comment by: IVY J AND KAREN K (Philippines) Tue., Dec. 14, 2010 at 5:12 am UTC
don't worry i know that god will help you in fighting with that disease you encounter right now and i wish you'll be fine..just always pray....god will always be there for you..
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Comment by: Tess (Midrand) Wed., Sep. 15, 2010 at 12:22 pm UTC
Hi Stones cannot work miracles But thy can strengthen the immune system AMBER WORN ON SKIN a tourmaline necklace can be worn Meditat on the Violet Flame Sterkte
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Comment by: Gilbert Chewe (Durban South Africa) Tue., Sep. 8, 2009 at 8:30 am UTC
Gracia you are blessed and look forward and see that there is nothing impossible for you to have your own family. All is well. God bless you.
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Comment by: B L (london) Fri., Aug. 28, 2009 at 8:30 am UTC
Im a HIV positive Asian male with healthy outlook, would love to find someone who would love to have child together. If we are HIV positive, our child does not have to be HIV positive, but can have a more positive future and understanding.
Reply to this comment

Comment by: Damaris (Bolivia) Mon., Aug. 17, 2009 at 6:47 pm UTC
Gracia is my sister, we love her so much, and I want to tell every body who sees this page, that God's love is above all, if you can't be sure of your family's love, your health in future years or anything else, be sure about this YOU ARE PRECIOUS TO GOD AND HE LOVES YOU, HE wants only your happiness and your salvation, trust him and when ever you feel is too mucho for you, let him do the hard job and carry your worries, he loves you no matter what, that's what makes my sister wake up every day and that's what gives us (her family) enogh strength to keep the hope and love to her. Your life is not worhtless if you let your self be hugged by GOD's arms and cry your pai and let him take care of you, we'l be praying for you where ever you are... feel our love to you too.
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Comment by: Preciosa (Mexico) Fri., Feb. 27, 2009 at 7:21 pm UTC
En realidad estoy impresionada con tu testimonio,
se lo que se vive cuando te diagnostican, yo no vivia con mi familia estaba viviendo en otra ciudad. En realidad la noticia fue peor que bomba yo tenia una pareja por 3 meses y nos separamos despues me entero que esta enfermo empece a visitarlo y empezamos a ir con medicos para que lo consultaran y asi fuimos como 6 meses a medicos diferentes yo me entere porque el se agravo y fallecio sin yo saber que el era portador 5 años antes.
Cuando el fallece ese mismo dia su mama me comento que habia fallecido de sida, es como si el mundo se me hubiera venido encima.
Creeme a sido algo dificil esta situacion porque no se como decirselo a mi familia de hecho todavia no lo hago solo lo saben pocas personas de mi familia solo 3 hermanas.
Lo mas triste es que un dia le dije a mi pastor lo que me estaba sucediendo y el comentario que me dijo primero por causa del pecado. Bueno entiendo que fue cierto porque no estaba casada, pero con el tiempo me preguntaba como estaba y una ocasion me dio tristeza porque me dice no se lo digas a nadie porque la iglesia no esta preparada. Y escondiendo las cosas y sin hablar del tema será peor. En realidad es duro, pero ahora tengo paz en mi corazon porque he descubierto cosas maravillosas de la vida. Se que un día me voy atrever a decir toda la verdad.
Muchas gracias por tu testimonio y que Dios siga
usando tu vida como hasta ahora.
Gracias por este espacio. Es la primera vez que lo escribo y creeme es como un proceso.. Mil gracias.
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Comment by: B P O A (Ghana) Fri., Jan. 16, 2009 at 10:48 am UTC
Hey! I am happy to read about Gracia testimony, i know her, we have met several times at conferences but i never know her story. I wish we Ghanaians can also have not just a Pastor's daughter but a christian who could come out and tell the church and the whole christiandom about what it is like living with HIV/AIDS and it crosses everywhere even in the church. God bless you Gracia, i wish i have the kind of courage to do the same in my church. Never give up
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Comment by: Christina Maietta (San Gabriel, CA 91776) Wed., Jan. 14, 2009 at 2:28 am UTC
my name is christina maietta, I was diagnosed in 1989 june. I found out three months later I was pregnant. I didn't know what to do. I don't believe in abortions, so I prayed to GOD what to do? To make a long story short she lived for 15 1/2 years and passed away in oct 2006 ! if anyone can relate to me contact me at
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Comment by: ISHWARCHANDRA (DELHI, INDIA) Sat., Dec. 6, 2008 at 5:16 am UTC
WOW u have been so bold and i was so proud to say for your deeds and your activities. Keep it up Gracia!
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