This lack of knowledge is due to the fact that women remain invisible in
the health care systems, according to Argentine activist Patricia Pérez,
who was diagnosed with HIV (human immunodeficiency virus) when she was 24 and told that she might survive two years more.
That was two decades ago. The world was just beginning to reach widespread awareness of AIDS. Pérez cried because she didn’t know what to do. Separated, and with a son, once she regained composure she began contacting others with the same problems and worries and created a group of volunteers at the Hospital Muñiz of Buenos Aires to attend to their needs.
Five years later she took part in a demonstration in London of 10,000
people with HIV and truly realised that she was not alone. "I couldn’t plan years in advance, but I began to think about the next few months," she recalled. At age 30, she helped found in Amsterdam the International Community of Women Living with HIV/AIDS (ICW), which has 8,000 members in 57 countries. She is now coordinator of the Latin American branch, ICW Latina.
In 2003, she was called by then-United Nations secretary-general Kofi Annan to track progress on the agreements of the 2001 UN Special Session on HIV/AIDS, as one of the 15 people in the world with most experience in the subject.
This year she was nominated for the Nobel Peace prize by the First Lady of Honduras, Xiomara Castro, to make visible a problem that affects 19 million women around the globe. The government of Argentina is backing the nomination.
Pérez spoke with Tierramérica/IPS correspondent Marcela Valente:
Tierramérica: What was your life like before the HIV diagnosis?
Patricia Pérez: I was a gym instructor and worked for the municipality of Buenos Aires.
TA: How did you find out you had the virus?
PP: My boyfriend at the time had a test that came out positive. I went back and forth for six months before I had the test. At that time they didn’t distinguish between the virus and AIDS, they talked about the "pink plague", associating the disease especially with gays. I thought the test had to be wrong because I felt fine.
TA: How has your life changed since then?
PP: Being put on the verge like that changes you. But you get beyond the commotion and the paralysis, and you begin to live the best way possible. First I began to work for myself. I decided that I wasn’t going to sit and wait for death. I wanted to understand what was happening to me and to talk with other people who were like me, to see what problems we’d have to face.
The medical workers, for example, weren’t trained. You’d be in a hospital
waiting room and a nurse would say: "The woman with AIDS, please come this way," and your blood would run cold. After feeling that aggression, I tried to do things to change that reality.
TA: What are the problems for women with HIV?
PP: The health policies don’t have a gender perspective. There are no specific studies of how the virus and the treatments affect our bodies in particular. We have hormonal differences, differences in the reproductive system, a greater predisposition for certain types of cancer, and all of this is just barely beginning to come to light because of pressure from us.
Until recently, they demanded that we didn’t have more children. If you
became pregnant you were a criminal. These problems have to do with a
cultural question that AIDS brings into sharp focus. In Latin America, we
women are always a step farther behind, and AIDS demonstrates that
disparity in a cruel way.
TA: What are the challenges that ICW Latina is confronting?
PP: We accompany women from the diagnosis on, and respect their time (in dealing with it) and help them to prepare themselves. And that is not just knowing how to use a condom, but rather negotiating with the doctor for better treatment, demanding that the government provide high quality pharmaceuticals, and appeal for justice. There are countries in this region where a woman can be rejected in an adoption application or discriminated against for custody rights in a divorce (because she has HIV).
TA: How did the idea come about to organise girls?
PP: Many of my colleagues have daughters with the virus who are entering adolescence and have other needs. Paediatric AIDS practically doesn’t exist on the agenda. There are very few treatment formulas and it is difficult to achieve adherence to the treatment program. But we don’t want to speak for them, which is why they also participate with their own voice.
TA: What do you think of your Nobel nomination?
PP: That it will help make our voice heard and help put us on the policy agendas, beyond the AIDS community.