August 1, 2008
The XVII International AIDS Conference (AIDS 2008) is a magnet that attracts thousands upon thousands of HIV-positive people, activists and community leaders from all walks of life and all parts of the globe. We were fortunate enough to meet a few of these people and talk to them about their perspectives and their experiences. In this interview, Terri Wilder talks with Margarita, from Lebanon, about what it's like to live with HIV in her home country.
Tell me about your experiences living with HIV in Lebanon.
It depends. As a matter of fact, living with HIV is very different than it used to be. I knew about my infection in 1993. At that time, we didn't have much hope. We thought it was the end. Thinking about what society would think, what the community would think, and what the family would think was another difficulty imposed on us.
But now, it's much different. As far as medication, we used to have, for example, 14 tablets. Now it's better. Discrimination is still there. But surprisingly enough, there is a change. Because we want to have a change. The war in Lebanon taught me something: Fear is contagious. So I'm trying to adopt this and adapt it in my life. If I don't show my weaknesses, people will not be afraid of me. This is the way I'm living.
In the very beginning, I wanted to die. I didn't have any aim, any goal, after learning of my infection. But then I had some good investment in myself, and I had people around me who invested in me. Now, I'm much different. I'm full of hope, full of energy, and looking forward to other projects.
For example, we had our first workshop for training HIV trainers, which is about peer-to-peer education; this is one of my aims. My dream is to educate other HIV-positive people in our area, because we know the problem. We have common traditions. The culture is almost the same. And we know the problems. We know what you are talking about. We use the same vocabulary.
Another aim would be to have a palliative care center [a center that aims to ease symptoms for people with incurable illnesses], which we don't have at all. Not only for AIDS, but for other problems also, we don't have a palliative care center. They don't know what it is in our area. That is one of my dreams. For me, if I don't dream, I'm dead. And I'm not willing to die -- not now, at least. So I'm moving forward.
What kind of support do you get from your family and friends?
None from my family. My friends: Yes, I have some support. I would say some, because I had difficult times with some of my friends. They used this against me. They were trying to fight me with my own weapons. It was a negative experience. But generally speaking, I would say it was good. It was very good.
Surprisingly enough, it's not the level of education that indicates whether people will be supportive or not. You can find doctors who are not supportive and not understanding. And some people who are, I would say, illiterate, they can stand with you, stand by you, help you, assist you, and you can count on them.
How is your health now?
I'm doing fine, except that I have some side effects from the medications. I need to change treatment, but we don't have [the HIV medications I would need] in Lebanon. The Ministry [of Public Health] did not approve it, so we're living with what we have.
What medications are you on now?
Now I'm using Combivir [AZT/3TC] and efavirenz [Sustiva, Stocrin] -- of course, I'm talking about the generic versions of these drugs. I'm supposed to move to Viread [tenofovir], but we don't have it. This is my second change in medication. The fact that we had ruptures in stock, plus the fact that when you don't have a medication in Lebanon, they simply switch you to another one. So they are playing with your body. It's not good. I'm on antidepressants because of this. I have some gynecological problems. In Lebanon, you have to pay for everything, because the medical system doesn't exist.
What do you think is the biggest challenge to living with HIV in Lebanon?
The biggest challenge would be that, because we have so many conflicts in our country, HIV-positive people are not considered a priority. For me, as an individual, [my goal is] to fulfill my dreams. I have a lot of dreams regarding HIV-positive people, regarding prisoners in Lebanon. Because I'm a volunteer with the prison infirmary in Lebanon, I visit the prisoners and I know they need a lot of things.
Thank you so much for talking with us today.
This transcript has been lightly edited for clarity.