living with aids in el salvador
One woman's story
by Susana Barrera
María de la Paz Callejas is 29 years old and the mother of three children between 10 and 15. She smiles often and is known for her lively personality. She realizes that she is living in the last days of her life. Each day that passes is a struggle against time. Callejas is one of the few people in El Salvador who is facing up to HIV.
The telephone rings. It is the confidential line of the National Foundation for the Prevention, Education and Accompaniment of Persons with HIV/AIDS, known as FUNDASIDA. Callejas answers the phone; without revealing that she, too, is a carrier of the virus, she lets the caller know that she understands perfectly.
Callejas came to FUNDASIDA in 1998 after receiving her diagnosis from a physician in the most grotesque way possible.The physician briskly gave her the news, telling her that she had only five years left to live. Since then, she has had to confront humiliation, denigration and the need to prepare her children and the rest of the family for her final days.
"The virus came to my house," Callejas says. "I didn't look for it. My husband died of AIDS. He transmitted it to me."
El Salvador the smallest country in Central America with a population of six million people, the majority of whom are poor since 1984 has had to confront, along with the other countries of the region, the growing HIV/AIDS pandemic.
These days, according to national statistics, 6 percent of the adult population in El Salvador is infected by HIV. More than 2,000 persons died of AIDS in 2001. Eighty-six percent of infections were related to sexual activity, 4.6 percent were infants who became infected through their mothers, and 1.5 percent resulted from needles shared by drug users.
According to official statistics in El Salvador, 24,000 persons are carriers of HIV, and more than half are not aware of it. El Salvador has the fourth highest number of cases among Central American countries. Since 1984, 13,000 children have become orphans as a consequence of AIDS. Organizations involved with HIV/AIDS estimate that by the year 2004 we will have one member of each family infected with HIV.
FUNDASIDA, an organization which has existed for the past 10 years, receives 1215 patients daily, the majority of whom are male and test positive. Dr. Julio Alfredo Osegueda, executive director of the organization, says that each month two to four of his patients die.
Callejas has been involved in every program that the organization offers. She participates in the Help Groups, which offer a weekly time of reflection and sharing. Parents of patients attend, as well as the persons who live with AIDS. Patients are adolescents, rural peasants, heterosexuals and homosexuals, all of whom appear to be in good health.
"They come from all strata of society, day workers and physicians alike," says Dr. Guadalupe Flores, a psychologist at FUNDASIDA. "The virus is no respecter of persons."
Callejas listens attentively to the group discussions. She is standing because she also has to attend to the telephone, which rings constantly. She explains that, each day, between 1522 persons call, the majority of whom are men. Some admit that they are carriers of the virus, others don't. Mondays and Tuesdays are the busiest, with the most calls. She thinks the reason is that on weekends the callers had unprotected sexual relations with possible carriers.
Callejas has already begun to take anti-virus medicine the famous cocktails which the Social Security Institute (Public Health) offers.
"I do not ask God that I be healed, only I pray to God that I will have time to see my children grow up," she says. "My children already know. It has been difficult because they were almost expelled from the school. I had to talk with the teachers of the school, and the director, to explain to them that I was the one with AIDS, not my children. I asked for 15 minutes, and the meeting lasted over an hour."
Callejas lives west of the capital city, in Lourdes, Colón, a semi-urban zone. She lives in the open-country part of the area. Her neighbors are people of little education. When rumors came about her sickness, some wanted to expel her from the neighborhood. At that time she worked selling food, such as tamales and pastries. Some of her customers stopped buying from her, saying that she was "una sidosa," (a bearer of "SIDA," the Spanish acronym for AIDS). She says that many times the rejection of her neighbors has hurt her more than the sickness.
Four years have passed since Callejas learned that she was a carrier of the virus. She is dedicated full-time now to the task of education and prevention. Her dream is to form an association of women who carry HIV. She believes that it is the women who suffer most from the pandemic.
Callejas is the third person with HIV to have appeared on the local media. She was on a talk program of a local TV station. Clear, sure and precise, she shared her testimony eloquently and with courage. She announced that the use of preventative measures was almost totally safe. "I have a partner and we use condoms, and my partner has not gotten the virus," she said.
She says that her daughter has been educated in prevention. Her daughter told her that she says to her boyfriend that if they are to have sexual relations, they have to use a condom. "Because of this sometimes my boyfriend says he doesn't love me anymore."
In El Salvador there are more than 20 organizations to support persons who live with HIV. All of them form a network called Prevention Network. The Anglican/Episcopal Church, along with these other organizations, offers pastoral support to some of the groups that watch over those who suffer from the virus.
"We have strong commitments to those in our society who suffer," says Bishop Martin Barahona of the Anglican/Episcopal Church. "Sometimes it is difficult to care for them, because we lack sufficient means to offer for the clinical needs. At times we have contributed to the prevention campaigns. We have offered condoms to some of the organizations, and our dream is to offer a clinical pastoral ministry to those who live with HIV/AIDS."
Discrimination continues to abound. In the hospitals, if someone dies of AIDS, the parents are forced to clean the body in order to be permitted to take it from the hospital.
Patients who arrive at the hospital with AIDS sometimes find a public sign on their beds announcing "Patient with AIDS." Most family members of those who have died of AIDS hide the diagnosis for fear that there will be repercussions.
Paradoxically, Callejas has been able to find employment, thanks to being a carrier of HIV.
During the week, in addition to working with FUNDASIDA, she visits support groups in the public hospitals and works with a group called Live with Condoms. "I would wish that all who live with HIV would have the same good luck as I have had, that they might be able to obtain work as I have," she says.
In the legislature, a "Prevention and Control of Infection Caused by the Virus HIV" law is currently being discussed. In this proposal, a directive mandates an HIV examination for workers when the employer or administrative authorities require it. This remedy has awakened the concern of human rights organizations, since the situation of persons with HIV is already so vulnerable.
Callejas has to consume 15 doses of anti-viral medicine daily. In order to receive this medicine, patients need to present to the hospital authorities two witnesses who will guarantee its correct administration. The price of the medicine in private pharmacies ranges from $500 to $1,000 monthly. Medical exams that determine the advance of the disease cost between $10 and $15 in some laboratories; in other labs the cost is much higher.
It costs $510 million annually in El Salvador to maintain each person hospitalized by AIDS. The cost could increase greatly. This indicates an economic expense that is more than the entire health sector in El Salvador could cope with. And William Pleitez, an economist for the United Nations Development Agency, recently said that the loss of productive manual labor in consequence of HIV/AIDS sickness is equal to a reduction of 2 percent of the Gross National Product of the nation.
For the second time El Salvador has proposed to the annual assembly of the World Health Organization a request for $40 million from the member countries to help raise awareness and increase attention for those sick with HIV/AIDS, tuberculosis and lung disease. As yet, there has been no response.
"Today, more than ever, I take care of my health," Callejas says. "I have a partner who takes care of me, children who love me, and a mother who understands me."
Callejas dreams of seeing her children grown and married and continues her work, hoping for a better policy for distribution of medicines for persons with HIV/AIDS and for an end to discrimination against them, so that they might live their lives as normal persons and write their own history.
[This article, originally written in Spanish, is available in the author's native language at www.thewitness.org/espanol.]