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Testing Postive in El Salvador: Stigma Remains, But Counseling Improves

The painful experience of one Salvadoran man who tested positive for HIV illustrates the urgent need to ensure the quality and confidentiality of HIV counseling and testing in El Salvador -- a need that is starting to be met with training in state-of-the-art counseling techniques and principles.

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In 1991, when Jorge (a pseudonym) found out that he was HIV-positive, HIV/AIDS was almost unheard of in El Salvador. A total of 132 AIDS cases were reported to health officials that year, while hundreds more AIDS cases and HIV infections went undetected.

Eight years later, the stigma and discrimination associated with HIV/AIDS remain -- so much so that Jorge is afraid to give his real name -- even though more than 6,900 Salvadorans have contracted AIDS since the beginning of the epidemic and at least 6,300 of them have died. What has begun to change, though, is the availability and quality of HIV counseling.

Change has come slowly. Members of some nongovermental organizations who refer clients for HIV testing received training in counseling in recent years, and they are passing on their new skills to their NGO colleagues. But until 1998, little or no HIV counseling was available in most public hospitals, where the majority of HIV tests are performed.

Salvadorans are usually tested for HIV only after they become so sick with an AIDS-related illness that they are admitted to a hospital. In the past, whether patients received any kind of counseling before or after an HIV test depended on the knowledge and inclination of individual hospital staff members, explained Family Health International consultant Mariana Iurcovich.

Most hospital staff members did not know how to counsel patients about HIV, and many did not even recognize the need for pre- and post-test counseling. "There was no official training, so in fact they didn't have counseling," Iurcovich said.

Recognizing the problem, Ministry of Health (MOH) officials requested assistance from FHI's Implementing AIDS Care and Prevention (IMPACT) Project. In August 1998, Iurcovich trained 50 health care professionals to enable them to facilitate training in voluntary counseling and testing for public health staff in El Salvador's 14 departments. She also worked with the MOH's national AIDS program to develop a training manual on HIV counseling and testing.

The training and the manual emphasize the need to respect patients' rights and offer compassionate, nonjudgmental support. Trainees also learned to follow strict procedures for ensuring the confidentiality of results.

The manuals will be distributed in September 1999, when Iurcovich returns to El Salvador to train 50 more health educators and other public health staff from every department to provide training in voluntary counseling and testing.

Iurcovich will use the curriculum from last year's workshop, incorporating suggestions from the first group of trainees on how to improve the training. The week before the second workshop begins, she will visit those facilitators to talk to them about their experiences as trainers and counselors. She also plans to talk to some of the health care professionals the facilitators have trained and observe these new trainees as they provide HIV counseling.

Iurcovich is eager to visit public hospitals and health units to assess the impact of the first workshop on the quality and availability of voluntary counseling and testing. "I want to see if it's something that is really happening all over the country," she said.

During her last visit to El Salvador, when Iurcovich observed and provided technical support to facilitators during training workshops in five districts, she already saw encouraging evidence of a new commitment to providing quality counseling services.

"Before it wasn't so clear to them why it was so important for the client to have someone to support him or her and to explain the meaning of the HIV test," Iurcovich said. "They didn't realize how important it was to keep this kind of information confidential. And they have really changed their way of thinking about this."

Such a shift in thinking is essential to ensuring that no other Salvadorans have an experience like that of Jorge's, whose nightmare began eight years ago when he volunteered to donate blood.

No Way Out: One Man's Experience With HIV Testing
My principal motivation was to donate blood, not to have the HIV test. I was not ready in any way to be tested for HIV. In my mind there was no reason to think that the result could ever be positive because, I thought, "I belong to the health personnel union, and my profession makes me invulnerable to getting such diseases." This idea is one of the worst mistakes you can make.

Since I never thought that the result could be positive --- and besides I never had such an active sexual life, or many partners -- I did not practice any prevention. I think that if I had received information on time -- and I don't mean academic information from the university, I mean the kind of information that makes us conscious of the risks we can have in life -- then my story would be different.

The way I learned of the result was through a letter in an unsealed envelope sent to me at my job. The terse letter said that I should be present at a specific hour, Monday to Friday, and ask for a person (since then I've been told that she was the director of the blood bank).

This letter hit me like a ton of bricks. I lost all peace of mind, and I kept wondering what they needed to tell me, or what had happened to my blood. I confess that I once thought that maybe the result of one of the three tests -- syphilis, hepatitis or HIV (then we used to say AIDS) -- could be positive, but I immediately put it out of my mind and changed my thoughts to "maybe they need me to donate more."

The result was communicated very calmly. But whenever you receive a positive result, you do not listen to what the counselor is telling you. Your life is like a movie -- in a few seconds, you see everything, very fast.

I remember how I cried, like a child. Then I asked the doctor to allow my friend to come and stay with me. I hugged my friend and asked him to hold me, while at the same time I told him about my health situation. It was one of the worst moments in my life, and its impact still exists in my mind today.

I felt like the only person in the universe with this problem. One of the most serious problems that came to mind was how could I tell my family, and suddenly I saw myself traveling down a road with no way out. How could it be possible that a professional like me could have this disease? Could I ever work with patients with their health problems? Suddenly I felt that six years at the university were going directly into the garbage and also a whole promising future.

But the worse had not yet started. People I had known for so long turned their backs on me in every way. It was disappointing to see how human beings can treat each other.

 There was no information about how to avoid infecting others. For more than a year I became absolutely asexual. There were no stimuli that could change my position. I was scared, and I thought that I was never going to use my sexuality again. I did not even know how to use a condom and when it should be used. After some years, I realized that I could have sexual partners again, always using condoms. I also learned to have one stable partner for a long time.

What I do remember is that I was required to inform my job as soon as possible, and I remember they even gave me a deadline. If I did not do it, they were going to inform my chiefs about my health status. And they really did, without my approval. They did not even tell me they were going to do it. I realized that everyone at the university knew my health status. Even my chief confessed that he knew it one week before I was told about it.

I wish it could have been different -- not just for me, but for everyone. It is the lack of confidentiality and professional discretion…There are many professionals today with no ethics or morals, and they do not know the damage they can do with their comments.

I communicated the result of my test to two people directly, and I told my family ten days after I learned it. After that, how the news was spread in my union is something I'll never know.

I received support from close friends, but the news started spreading. Then people started with prejudices and with really discriminatory and wounding comments.

Discrimination is a mild word for the whole Calvary I passed through. If I could put it into words, I'd say: cornered, persecuted, humiliated, accused, judged and I do not know what else. But what hurts most is that people you've known for such a long time are the ones who can do this to you. It does not hurt that much when it comes from people you do not know, but it does when it comes from people you call friends.

Thank God I always have my family's and God's support, and that's the important thing today. And even with all the terrible things that it has meant, learning that I was HIV-positive was a jolt that helped me in many ways, such as maturity, ways of confronting problems, and my life's vision and my self-esteem.

-- Interview by Susan Calderón