What about resistance tests? Have you been tested for HIV drug resistance?

Gracia with another AIDS activist award winner, Deborah Peterson Small, Executive Director, Break the Chains.

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.

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.

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.

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!

GRACIA'S MEDICAL UPDATES

CD4+ Count (June 2009): 410   Viral Load (April 2009): Undetectable

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."

GRACIA'S UPDATES

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 graciavioleta@gmail.com.

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