Written for Hivos by Consuelo Mora Benard

In 1997, a 22-year old woman was given access to an HIV patients’ wing in a Chilean hospital. Such area was formerly restricted to doctors and nurses, but now it was also open for Marcela Silva.

One could find her going back and forth bringing information from doctors to patients, to family members, to nurses. She was there to give comfort, face doctors with uncomfortable –and necessary- questions. She was there to accomplish a mission.

20 years later, Marcela stepped on a stage to with a broken but strong voice to give her testimony, “I received my cancer diagnose on 2012. I said to myself: I could either lay crying in my room or I could get up and go on. I decided to go on and stay vigilant, as a woman that lives with HIV and with cancer. I will declare, from now until the very last day of my life: We want nothing for us, without us!”

The audience was conformed by more than 150 from Latin America and the Caribbean people who had gathered in San José, Costa Rica, to participate at the first high-level meeting of women with HIV from Latin America, organized by ICW Latina and Hivos. Everyone stood up for a round of applause.

“I choose to struggle”

The journey from being a human rights advocate in those hospital halls to representing women with HIV in her country and her region was not an easy one. She acquired HIV right after she gave birth to her daughter, but didn’t find out until her husband was diagnosed and already dying of AIDS.

“Back then, there was restricted access to treatment”, she remembers. “You had to wait until somebody died to go into a “raffle” and get a chance to antiretroviral treatment. They wouldn’t let me see him in the hospital so I argued with the doctors for them to let me take him home and care for him on his final days. After he passed, I started going regularly to the hospital to care for other people with HIV, to advocate for their rights and their families”, she says.

A women’s rights activist

Marcela was one the first Chilean women with HIV to become pregnant under treatment; she was also one of the first ones to advocate for this cause. She has also been a strong activist for the free distribution of female condoms as a prevention tool against STDs, unwanted pregnancies, cervical cancer and HIV-Aids in the country.

Her work focuses on the end of stigma and discrimination against women with HIV in medical services, political spaces and in every-day life. She soon formed a group of women with HIV and realized that the gap between men and women living with HIV was huge.

“Society has more solidarity towards men than women. We get questioned all the time about our sex lives. Social death, even nowadays, hits us hard”, she says. This led her to work for women’s rights more actively and was named an ICW Latina representative in 2006.

“Advocating for human rights of women with HIV represents an everyday struggle. I participate in expert discussions, claiming that living with HIV, today is not a synonym for death”, she says and adds, “My cancer is at an advanced stage. Doctors don’t understand how I’ve been able to survive all this long. I could either stay home crying or I could struggle. I choose to struggle; I don’t have time to lament about anything. There’s too much to do for women’s rights”.

When asked about the impact of her work as an activist, she says she has no idea. “I know that thanks to my work and other people’s, girls have access to the human papillomavirus vaccine in Chile. On the other hand, I have no idea about the impact of what I’ve done. I just know that I have a really bad temper for injustice”, she claims.

A program by women with HIV for women with HIV

ICW Latina chose Hivos as a Sub-Recipient for its Women, Human Rights and HIV regional program aimed on promoting the human rights of women with HIV in Latin America.

The initiative has two areas of work: Women’s empowerment and advocacy. So far, women have included their demands at legislations and at the top of mind of regional and country political leaders.

ICW Latina and Hivos have also signed a cooperation agreement with 8 regional HIV networks and are working with more than 100 women leaders in violence awareness.

Marcela is the representative for Chile but also a living example of one of the program’s main struggles: The need for timely access to sexual and reproductive health services for women with HIV, which includes cervix cancer prevention.

According to UNAIDS data, women with HIV have 5 times more possibilities to develop this type of cancer.