The War on AIDS: Where are we?

“Bella detesta matribus,” or “Wars are the dread of mothers,” is one of many famous quotes from the Roman poet Horace. This pronouncement has certainly been proved true in Bogor, an hour’s drive from the Indonesian capital of Jakarta, where a very different war from the ones waged with spears and catapults is being fought.

Rico Gustav, Indonesia (source: sea-aids@eforums.healthdev.org)

Bogor’s battle is against stigma, discrimination and HIV.

Tasha, a 28-year-old community activist from the city, discovered she was living with HIV seven years ago after her husband Adam was diagnosed with the virus. At the time, the high school sweethearts were married and were expecting their first baby.

As soon as they found out they had HIV they went to the doctor to see what they could do to prevent their child from contracting the virus. After a great deal of effort and emotional stress, Tasha gave birth to a beautiful baby boy and 18 months later, her doctor confirmed that her son Adjie did not have HIV.

A mixture of relief and happiness came over the couple and, in their own way, they celebrated the start of their family.

Tasha and Adam believe that helping other people, particularly drug users and people living with HIV, is one of the few things that makes sense in the senseless world they have seen.

Both struggled with drug use for some time and once they had managed to stay clean they decided to work with an organization that provided programmes for drug users and people living with HIV.

One day, staff at a school who had heard about Tasha and Adam asked them to come and talk to their students’ parents about HIV. The couple agreed to help put a face to the HIV epidemic and soon they were being paid US $300 a month for their work.

Since then, they have been asked to speak at a variety of functions and they have been interviewed by the press and on television. Although Tasha and Adam prepared themselves for the stigma and discrimination that can often come with admitting to being HIV positive, they never experienced it.

Some people have even shaken their hands, hugged them and said encouraging things such as, “You are a great person”, “I admire your braveness”, or “Be strong! I believe they will find a cure!”

Years after Adjie was born, Tasha became the manager of a treatment centre for female drug users and Adam was put in charge of the organization’s drop-in centre for drug users. Life seemed to be going well.

But in September 2007, Tasha received an unexpected call while she was working on a project in the province of Aceh. The call was from the principle’s office at Adjie’s kindergarten, insisting that Tasha come to the school immediately to discuss an urgent issue. Unable to reach Adam, who was attending an HIV conference, Tasha rushed back to Bogor.

When she got there Tasha was relieved to find that Adjie was unharmed, at least physically. She rushed to the principal’s office to find out what was going on. The headmaster and several teachers were expecting her and when they started to explain what the problem was, Tasha felt tears roll down her cheeks.

One of the other parents had seen an article about Tasha and Adam in a magazine and out of fear and a lack of understanding of HIV, a number of parents had demanded that Adjie be removed from the school.

While Tasha had been away in Aceh, the parents and several teachers had striped Adjie to see if he had any rashes, which they believed would be an indication that he had HIV. They stopped him from drinking water from the children’s dispensers and questioned the four-year-old about his status.

Most of the other parents told their children Adjie had a disease and would not allow them to play with him. Soon only four of Adjie’s 30 classmates remained.

Tasha and Adam are still struggling to defend their son’s right to an education and fair treatment. His school, fearing bad press, have decided to allow Adjie to stay but his teachers still complain to Tasha and Adam that other parents have threatened to remove their children if Adjie is allowed to stay.

The National AIDS Commission has expressed its sympathy for Tasha, Adam and Adjie, but offer sympathy only, saying it is too expensive to take the school to court in Indonesia.

Taking Adjie out of the school would only cause the situation to repeat itself elsewhere, leaving Tasha, Adam and Adjie with no choice but to continue to try to give the other parents and the wider community information about HIV.

Tasha and Adam are pushing the school to provide other parents with the information they need on the virus and to create a specific policy on HIV. But they both fear that the stigma and discrimination have taken a toll on their son, whose personality has changed since the problems at school started.

“What really broke my heart was when I heard from one of the parents (who supports Tasha and Adjie) that my son asked her ‘Aunty, do you love me? Why do my friends run away from me when I want to play with them’. It just broke my heart,” Tasha said.

She also said Adjie was now quieter, more rebellious, harder to talk to and that he preferred to be alone. Adam said, “We’re afraid that this incident will crush Adjie from the inside and will affect him for the rest of his life.”

“We can already see the change. My son doesn’t even listen to me anymore,” Adam said.

It is sadly ironic that Tasha and Adam’s dedication to helping others has cost them their son’s rights and security. It is also ironic that while child protection laws exist in Indonesia, it is considered too expensive to pursue claims. What good are these laws if they only exist on paper?

The world has been at war with HIV for 26 years now and Indonesia has been battling the epidemic for about 22 years. Are we winning this war? Are we making any progress at a grassroots level?

Yes, we have come up with some great aspirations such as ‘Universal Access’, the ‘Declaration of Commitment’, ‘3 by 5’, but we have failed to protect a four-year-old child from destructive and painful discrimination.

Yes, we are making progress with antiretroviral drugs, and treatment programmes but people are still dying of AIDS-related illnesses.

Seriously, where are we in the fight against HIV?