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HEALTH-LATIN AMERICA: Girls Living with HIV Break the Silence

Marcela Valente

BUENOS AIRES, Apr 20 2007 (IPS) - “I feel happy when I’m with my friends; at those times, I don’t even remember that I have the infection,” Keren, an 11-year-old Honduran girl living with HIV, told IPS.

Her story brought home the ignored and largely invisible impact of the HIV/AIDS epidemic on girls in Latin America and the Caribbean.

Keren was in Buenos Aires along with Victoria, a 13-year-old Uruguayan who is also living with the AIDS virus, for the Fourth Latin American and Caribbean Forum on HIV/AIDS and STDs (sexually transmitted diseases), which ended Friday with a call for joint action to achieve universal access to anti-AIDS drugs.

Victoria and Keren – their last names were not divulged – were the central figures at the presentation of “Ynisiquieralloré” (And I Didn’t Even Cry), a book that presents the personal accounts of girls and teenagers living with HIV, which was published by the regional chapter of the International Community of Women Living with HIV/AIDS (ICW-Latina) with the support of UNICEF, the United Nations children’s fund.

“We decided to publish this book so that these girls would no longer be invisible and so that through their incredible experiences they can show us how they handle the diagnosis, which they do much better than adults, and can teach us a lesson about living,” said Rosa Dunaway, with the Honduran branch of ICW-Latina.

The two girls who took part in the Forum were both born with the virus. Victoria spent her first five years of life in a women’s prison with her mother. There she was well taken care of, she said, but when it came time for her to begin preschool, she was rejected at first, until a school was finally found that would accept her.

Keren also had a hard time enrolling in school. “I was admitted because my dad threatened them, but I was accepted on the condition that I stay in a corner, alone and without playing. But then I was taken out of that school and put in another one,” she said. In the new school, some of the kids called her “sidosa” (AIDS-ridden) when she was seven.

Later she found better acceptance. “They don’t discriminate against me anymore. I have a lot of friends, I feel normal, just like any other girl. The infection is inside of me, not on the outside,” said Keren, who added that she was “happy to visit and see Buenos Aires” and felt “calm, without any discomforts,” despite the virus.

Victoria also said she lives a “normal” life. “You shouldn’t be afraid. I act as if there was nothing wrong with me, except that every day I take the medicines that my grandma gives me and I go to the doctor. Some of my friends know, others don’t. Me and my friends from the clinic are trying to start a magazine,” she said.

UNICEF representative in Argentina Gladys Acosta explained to IPS that the U.N. agency agreed to support the project that gave a voice to girls living with HIV, “despite the risks of manipulation” that presenting them in public could pose.

The Convention on the Rights of the Child calls for “genuine participation by children. That is why we must open up new doors, not speak for them, not be interpreters of what they feel, but allow them to express themselves, so that they stop suffering in silence,” she said.

AIDS is “a humanitarian emergency,” and when children are involved, the priority is “to reestablish normality in their lives,” and help them integrate in school and with their friends. “The book ‘Ynisiquieralloré’, a story of sorrow and happiness, talks about all of this,” said Acosta.

There was great internal debate in the ICW-Latina network, which has about 2,500 members, prior to the decision to publicise the stories and testimonies of these girls, nearly all of whom are daughters of HIV-positive women.

In the end the desire to give them “prominence and visibility” was stronger than the difficulties and misgivings, ICW-Latina regional secretary Patricia Pérez told IPS. So they sought the support of UNICEF, and constantly attempted to maintain a balance between public exposure and the girls’ privacy, she said.

“The agreement was to fully respect their rights and needs, to go at their own pace, without forcing them, and also to listen to their demands, to what they need,” said Pérez, an Argentine activist diagnosed as HIV-positive in 1986 who was nominated by Honduras as a candidate for this year’s Nobel Peace Prize because of her courage and leadership in the anti-AIDS struggle.

Pérez was an official Argentine delegate to the special session of the U.N. General Assembly on HIV/AIDS in 2001. Two years later, then Secretary General Kofi Annan invited her, as one of the 15 most experienced people in the world on the subject, to participate in following up on the progress made since that meeting.

According to UNICEF, there are over two million children under 15 with HIV/AIDS in the world. Of these, 48,000 live in Latin America and the Caribbean, and most were infected during childbirth, a means of transmission that can now be prevented with appropriate and timely medication for the mother during pregnancy.

In recent years, science has made progress on treatments. But the disease is more aggressive in childhood, when the body’s natural defences are not as strong.

Children need special therapy and medication to protect them from opportunistic infections, which take hold when the immune system is weakened by AIDS. Such treatments are not always available.

One of the stories told by the book is that of Rosario, a 13-year-old Mexican girl who got severe lung disease when she was expelled from her school. Pressure from social organisations and the press allowed her to return to school, and since then her health has improved.

The Fourth Forum drew some 3,000 people from government bodies and civil society organisations, to consider the need to strengthen prevention measures, guarantee access to anti-retroviral drugs and increase the visibility of vulnerable sectors.

Among its conclusions was a declaration on the urgency of “making progress in the struggle against poverty, inequity, and gender inequality.”

In spite of efforts to improve regional distribution of anti-retroviral medicines, 240 people die prematurely every day, and 450 people are infected daily, many of them newborn babies or adolescents, stressed Dr. Mirta Roses, head of the Pan American Health Organisation, who gave the closing speech at the meeting.

The Fifth Forum will be held in Peru, in 2009.