Release date
November 26, 2007
Robyn Fieser
Regional Information Officer, Latin America and the Caribbean
Santo Domingo, Dominican Republic
011 (809) 567-1271

Fighting HIV Discrimination in Guatemala

November 26, 2007, —

By Robyn Fieser

GUATEMALA CITY, Guatemala — Sylvia (name changed) was abandoned at the age of 5, rejected by her family because she had HIV.

This month, 10 years after the government turned her over to Hospicio San Jose — a home for HIV-positive children partially funded by Catholic Relief Services — Sylvia celebrated her 15th birthday.

Children at Hospicio San Jose.

Children residents playing in the corridors of Hospicio San Jose. Photo by Hospicio San Jose staff for CRS

Her quinceañera, a traditional celebration of a girl's coming of age, was attended by about 50 people. Caretakers, volunteers and friends, all of whom have known and loved Sylvia through the years, came out, but not one of her schoolmates.

Sylvia's classmates don't know she has HIV, and the center's organizers feared that inviting them would open Sylvia to ridicule and discrimination.

"These kids [at the Hospicio] aren't just any kids, they've had to fight for their lives. And they've done that because of the teamwork at Hospicio San Jose and with a lot of love, support and solidarity," says Dr. Flor Idalia Muñoz, coordinator for HIV programs in Guatemala, one of the largest HIV programs for CRS in Central America. "But I know Sylvia was sad that she couldn't invite her friends from school. That is the reality we're still dealing with in Guatemala."

The party was symbolic of both how much and how little progress has been made in the field of HIV and AIDS in Guatemala, where about 10,000 people, or 1 percent of the population, are known to be living with the disease.

Fear and Ignorance

When Dr. Muñoz began holding educational workshops four years ago, surgeons told her they would never operate on an HIV patient. And it was not uncommon for priests to argue they didn't need HIV education because there simply were no cases in their parishes.

While understanding of HIV has improved slightly, it is still common for patients to encounter fear and ignorance. Often, patients diagnosed at a clinic that does not specialize in HIV will be told that they should go home, sell their belongings and expect to die within months.

Confronting such a fatalistic approach is at the center of CRS Guatemala's work on the disease and a critical component of the work carried out by our partners at Hospicio San Jose.

Located on a quiet, green lot just outside of Antigua, one of Guatemala's more bustling tourist centers, Hospicio San Jose is one of the few facilities in Guatemala to provide integral support to people living with HIV.

Just over 50 children live at the Hospicio, where they receive antiretroviral treatment paid for by the Guatemalan government.

The same doctor and health care workers that make sure the children take their medication, eat properly and are generally in good health also tend to more than 100 HIV-positive adults who visit the hospice on an outpatient basis every month. Hospicio San Jose's clinic fills in the gaps left by public hospitals around the city, which will only see patients once every three months.

"When they have health issues in between [visits to the public hospital] — things like skin problems or pneumonia — they can come to us," explains Ana Luisa Pelaez, an HIV educator at the hospice, as she strolls through the corridors of the clinic greeting children by name.

Doing 'Just Fine'

But in many cases, it is the emotional crises that pose the biggest challenge. "A lot of my work here involves helping people out of depression and into the realization that this is not the end of the world. The people that diagnose some of our patients only tell them they're going to die and refer them here," says Ana Luisa. "I tell them, we're all going to die — it's just a question of when — and that for now, they are going to do just fine."

Member of Hospicio San Jose's support group.

An HIV-positive member of Hospicio San Jose's support group stomps on his own sketch, a visual representation of the emotion of guilt, as part of a self-esteem building workshop. Photo by Robyn Fieser/CRS

At a monthly support group in Guatemala City run by Hospicio San Jose staff, including Ana Luisa, overcoming the death sentence of HIV was an inspired topic.

"At first, I couldn't talk about it. I was quiet and that, not HIV, was what was killing me," said Pamela (name changed), one of 15 people with HIV who met earlier this month to support one another and build confidence within this unique environment.

Pamela, a mother of five, was diagnosed seven years ago. With the news came the realization that her husband, who ultimately died two years later from an HIV-related illness, had been unfaithful.

Fear, heartbreak and silence gripped Pamela for several months, as she struggled to come to terms with a disease she didn't understand and emotional scars she thought would kill her.

It was the support group that gave her the first glimpse of hope.

"Without them I would have died," she says.

Pamela and others in the group said they struggle every day to find normalcy in a society that often shuns them.

For Elena Clarijo Uribe, director of Hospicio San Jose, the only way to fight the fear of HIV and the discrimination it fuels is through education. In her 10 years as director of the Hospicio, she has seen significant progress.

A few years ago, for example, she and her staff were able to find a school for the Hospicio's children. Gaining the acceptance of the school's teachers, administrators and the parents of its students meant conducting a daylong forum on HIV, and particularly on how the disease is transmitted.

"The homework of all of us is to educate people about HIV," she says. "We remember that on World AIDS Day, but it needs to happen every single day."

Robyn Fieser is CRS' regional information officer for Latin America and the Caribbean based in Guatemala.