Having HIV in the 1990s meant automatic exclusion from your social circle, discrimination and a lot of stigma. It was even more difficult in developing countries, where HIV was, in the minds of many, a death sentence – because despite being a step away from entering the millennium, ignorance flooded Latin American countries. When our family was diagnosed in 1996, my parents began to sell their things and say goodbye to friends and relatives. In those days, there was no possibility of antiretroviral therapy because it did not exist in my country until three years later, with the arrival of azidothymidine (AZT) as a donation by the church. The state-approved drug did not arrive until 2003. As you can imagine, testing positive in Honduras before 2000 was to be denied the possibility of a full life. The terror overwhelms you, but the love of living is too strong to let you sink.
In 1999, we created the Fundación Llaves because we were tired of seeing our friends die, tired of seeing children sick instead of playing because they lacked medicine and tired of our rights being violated because of the absence of a special law. I was one of those children. When I was a baby, I spent the first year of my life in the hospital with pneumonia, but the worst was at age 8, when I had acute pancreatitis as a side effect of an antiretroviral (ARV) drug. I left the hospital weighing 30 pounds.
Spending my childhood sick, and suffering moments of discrimination when all I wanted to do was play with my friends, made me decide to put a stop to this. Without even wanting to, I became a model and even an inspiration for many girls and boys in my condition: after my recovery from pancreatitis, I began to speak openly about my experience living with HIV. I was often invited to give newspaper, radio and television interviews, so it was a wonderful opportunity for me to meet other girls and boys, for them to get to know me and for us to help each other be children.
We women with HIV have walked a very hard road that has seen change for the better but not enough
The work I did with Fundación Llaves helped attract attention and led to a government-level decision to improve the list of paediatric medicines, so that other children would not have the serious side effects that I had and would be able to take pills that were kid-friendly. I hated my pills, not out of shame, not because I did not accept my condition and not because I did not want to take care of myself, but because they were so big that it hurt to swallow them. And they had a horrible taste, a taste not meant for a child. I remember crying and begging my parents to smash them into powder and dilute them in juice. For this reason, my parents insisted that the Government buy paediatric medicines, so that I and the other boys and girls would not have to use adult medicines.
I’m not sure if my mother and I achieved a global impact, but regionally I like to think we did: by sensitizing the First Ladies of Latin America and some presidents with whom we participated in different international events; by giving lectures in schools so children would know what it means to live with HIV and to not be afraid of it; and above all, by focusing attention on the need to improve health services for children with HIV and make HIV testing more efficient for pregnant women to prevent more children from getting infected.
The participation of such notable women as the First Ladies and others has certainly played a greater role in raising awareness and decreasing taboos about HIV, sexuality and its diversity, than that of many men in power. Although new infections in children and girls are declining, it is necessary to pay attention to the health of adolescent boys and girls, especially sexual health and education, because teenagers get pregnant every day. Teens do not know where to buy condoms or how to use them, they have misconceptions of what consent is and don’t know that they can say ‘no’.
We women with HIV have walked a very hard road that has seen change for the better but not enough. There are still children who are being discriminated against, there are children who do not have medication, there are children who are being abused and there are children who do not know they have rights. We have more work to do, but every day we become more united and every day we fight together to get where we want to be.
Keren Dunaway is a 22-year-old Honduran who has been an activist against stigma and discrimination and for the rights of children living with HIV, for almost 15 years. Her work has included editing a children’s magazine and she has been a UNAIDS intern. One of her proudest achievements was speaking at the opening of the International AIDS Conference in Mexico City in 2008, at age 12.