Voices of Women Living with HIV/AIDS in Honduras

San Pedro Sula, Honduras—Ana and Virginia consider themselves sisters. They do not share the same parents, but they are fighting the same disease and are united in their determination to stay healthy for as long as possible. Their bond runs even deeper – both young women got HIV from their partners and then unknowingly passed it on to their daughters.

Ana, 26, and Virginia, 25, arrived two weeks apart at the Hospicio San José, a hospice for terminally ill patients, and immediately became inseparable. Located off a potholed dirt road near San Pedro Sula, the hospice provides 24-hour nursing care and dignified treatment to all, especially the poorest of the poor who have no means of income or family support. The majority of its patients are living with AIDS.

Ana learned about the hospice from a nun, while Virginia was referred through a support group. “When we can’t bathe ourselves, they help us,” explains Ana, whose pronounced collarbone reveals the extent of her weight loss. “It’s embarrassing…but they don’t make us feel awkward.”

In a country where many people are afraid to disclose their HIV status or to get tested, community members initially rejected the idea of a hospice when it opened in 1991 due to the stigma and fear associated with people living with HIV/AIDS. “Now that more people are dying, they realize this service is needed,” says Catherine O’Leary, an English nurse who administrates the facility.

Ana and Virginia sit together on a bench surrounded by bougainvilleas and ginger plants in the hospice’s courtyard. One twirls a lollipop and the other a piece of blue cloth. They openly share their stories and have strong messages for their peers.

“I realized that I was HIV positive when my daughter died,” begins Ana. Her husband was the first and only man she had been with. She was married at 16 and two years later, when she was six months pregnant, he began to abuse her. “He liked dancing and drinking and didn’t like to work,” she explains, so she left him. Soon after her daughter was born, her husband took the baby away and threatened to beat her if she came after her child. Ana was desperate. When the child got very sick, and wouldn’t stop crying, her husband gave her back. With the help of her mother, Ana took her daughter to a hospital and after a series of tests the doctors found out her baby was HIV positive.

“They told me in a matter-of-fact way,” she remembers. “They didn’t give me information on how to get help.”

Her husband died eight months after her daughter. In his final days, he admitted to having unsafe sex with prostitutes. Many women think that marriage will protect them from HIV infection. In Ana’s case, the opposite was true.

HIV infection is concentrated in the country’s two major urban areas, San Pedro Sula and the capital, Tegucigalpa. HIV prevalence among sex workers in San Pedro Sula was estimated at 13 per cent in 2002.

" You never know who you are with and you should always protect yourself. Information for youth is really important because this disease grabs you and doesn’t let you go. "

--Ana, 26 years old

Her family is very supportive, but she had to educate them about the disease. “In the beginning, my mum gave me a separate plate and I told her that the disease wasn’t spread that way, only through blood and sex. So she changed.”

At times while Ana speaks, Virginia nods her head. Other times she looks away, perhaps remembering what she has faced over the last six years since she was diagnosed with HIV. Virginia has two children and her three-year-old daughter is HIV positive. Like Ana, she is from a poor family and only completed primary education. She separated from her partner after three years and went to live with her parents. She no longer has contact with him and only knows that he is living somewhere in the United States. “The truth is that I don’t want to be with another man. I just want to take care of my daughter,” she admits.

Unlike Ana, Virginia was informed of her HIV status by very compassionate doctors. A local support group, Puerto Abierta (Open Door), referred her to the Hospicio San José when she became very ill. She sees her daughter on weekends and her dream is to watch her grow up.

“I would like to live 20 to 25 years more to be able to give her advice and tell her to protect herself if she wants to have relations,” she says, tightly wringing the blue cloth in her hands.

In her 12 years at the hospice, Ms. O’Leary has seen countless youth and women lose their lives to AIDS. A wooden cross in the chapel bears the names of all those who died there. It became so crowded with names that staff added a second wooden face, hinged at the top, to mark the passage of others who sought refuge with them.

Globally, HIV/AIDS has become a disease of young people. Every 14 seconds, somewhere on earth, a young person is infected with HIV. The majority are women. But youth are also the greatest hope for turning the tide of the epidemic. “You have to reach out to young people,” stresses Ms. O’Leary. “The problem is not going away - it’s actually getting worse - and change needs to happen with those entering their reproductive years.”

Although information and access to voluntary counselling and testing services are the first line of defence for young people, education alone does not guarantee behaviour change. Polls show that many people in Honduras know about HIV/AIDS, but don’t practise safe sex.

“Young people often underestimate or deny their risks of HIV infection,” explains Dr. Flor Matute, HIV/AIDS Advisor at the office of UNFPA, the United Nations Population Fund, in Honduras. “Feelings of invincibility, combined with a lack of awareness of the consequences of risky behaviour, often make them less likely to take precautions to protect their health and their lives.”

People living with HIV/AIDS can play a crucial role in spreading awareness about the disease. Staff at the hospice reach out to the community through talks in local schools. They also invite groups of students to spend time at the hospice to learn more about the disease, and to learn to accept people living with HIV/AIDS. The process is gradual. Students first watch and help with chores. Once they gain the trust of patients, and feel more at ease, they help feed patients.

Proper nutrition is a major concern at the hospice. With scarce funds, they ensure a balanced diet to boost energy levels and counteract the physical wasting that accompanies the disease. With support from the Ministry of Health, all patients now receive antiretroviral therapy (ARV). Thanks to increased commitment from the Honduran Government, as well as financing from the Global Fund to Fight AIDS, Tuberculosis and Malaria, 55 per cent of all people living with HIV/AIDS in Honduras currently have access to ARV therapy, up from 5 per cent in 2002. This is an impressive gain since globally fewer than one in ten people who need antiretroviral therapy receive it.

Prevention efforts are also a key priority at the hospice. They work to educate and empower patients and help them accept their illness. Every Wednesday, they hold talks on sexual education. This year, UNFPA provided the hospice with a small grant to support community prevention programmes targeted at women and young people. The grant also helped to fund workshops on self-esteem, nutrition and income-generating activities for patients at the hospice.

UNFPA works throughout Honduras to improve access to information, education and services for youth, including family planning and prevention of sexually transmitted infections and HIV/AIDS.

“In the era of HIV/AIDS, access to quality sexual health information and services is a matter of life and death,” says Alanna Armitage, UNFPA Representative in Honduras. “UNFPA works with government and non-governmental organizations to provide youth-friendly services and ensure the active participation and leadership of young people in their own development.”

While the Government of Honduras has stepped up efforts to prevent HIV/AIDS, more needs to be done to reach the most vulnerable groups. Women’s particular vulnerability to HIV/AIDS, and the need to protect them, was spelled out ten years ago, even before the disease had become a global epidemic, at the International Conference on Population and Development. “The social and economic disadvantages that women face make them especially vulnerable to sexually transmitted infections, including HIV, as illustrated, for example, by their exposure to the high-risk sexual behavior of their partners,” concluded the conference. In the last decade, the dramatic increases in HIV infection among young women have made this issue an even more pressing global concern, and reducing HIV prevalence among pregnant women has become an internationally agreed-upon target in the fight to reverse the spread of the disease.

World AIDS Day on 1 December highlights the need to strengthen the leadership role of young people, and especially women, in the fight against HIV/AIDS.

Virginia and Ana are not familiar with global efforts to prevent and treat HIV/AIDS, but they do have a strong message for today’s youth. “Those who are healthy should protect themselves because this is sad,” say the two friends who consider themselves sisters. “Those of us living with AIDS know just how sad this is.”

--Micol Zarb

Note: This interview was conducted in March. Today, Virginia sells lottery tickets as a means of generating income. She worked in a clothing factory for two months, but was forced to resign after she developed health problems from the materials. Ana has been unable to find work, but helps to make pi?atas and Christmas decorations, which are sold to support the self-help group run by the hospice. Both young women are in good health and live at home. They receive support through the community outreach programmes run by the hospice.