Ghalia had dressed up for the occasion.
The woman, who is homeless and HIV-positive, was participating in a press conference organized by the Tunisian Organization for the Fight Against STDs and AIDS (ATLMST) on Dec. 2, World AIDS Day. On the stage, professionals were discussing the crisis using acronyms — HIV, MSM (Men who have Sex with Men), UID (Users of Intravenous Drugs). We had to listen carefully just to follow along. Few journalists showed up.
Ghalia, who asked to remain anonymous because many of her friends and family members don’t know she’s HIV-positive, says her husband infected her in 2006. Ghalia claims her husband knew he carried the virus, but never told her. “He said it was out of love,” she explained. She says that’s how she realized he had been cheating on her.
AIDS infection rates in Tunisia are generally low. According to UNAIDS, 3,400 people are living with the virus. ATLMST says Tunisia’s Ministry of Health puts the number at 1,900.
Professor Ridha Kamoun, ATLMST’s director, credits various societal taboos for the country’s low infection rate. “We quickly noticed the link between conservative mores and a low infection rate,” he said. Others argue, however, that taboos represent more of an obstacle than an opportunity, and that the numbers could be much lower if it weren’t for those taboos.
The epidemic mostly affects parts of the population that are already heavily stigmatized, like sex workers, gays and intravenous drug users. These groups are not only marginalized by society, but also criminalized by the justice system. The sentence for drug use, for example, is one year in prison. Sodomy is also a charge in Tunisia, and can lead to three years in prison.
Since the state is legally prohibited from working with criminalized populations, prevention work is left to other organizations — quite a paradox for a country that guarantees free medical treatment to its citizens.
Funded in part by the Global Fund to Fight AIDS, the few Tunisian organizations that are active in the field concentrate on outreach work. These volunteers, for the most part HIV-positive, are active in their communities and organize workshops.
ATLMST recently started two shelters for drug users in the cities of Nabeul and Melassine.
Boxes filled with lubricant, clean syringes and condoms are stacked in ATLMST’s offices, waiting to be unpacked and distributed. The symbol of the fight against AIDS, the red ribbon, decorates the walls and computers.
ATLMST follows about 400 people. Many of the patients interviewed talk about their lives in terms of “before” and “after.” Many of them struggled before getting infected; Ridha Kamoun says drug users experienced trouble with the police, gays had trouble with their social status, and sex workers often had trouble with money.
Most of them lost their jobs after being diagnosed. Some have lost their families or their friends. They’ve all lost part of their health.
Ghalia belonged to the middle class and worked in the pharmaceutical industry before her diagnosis. Since then, she has resigned from her job, unable to tolerate the discrimination any longer — at one point she was banned from using the public restrooms at her workplace.
Her family knows and accepts her situation. From time to time she goes to eat at her parents’ house, where her brothers and their families also live. After finishing the meal, she says, her sisters-in-law throw out the plate and silverware she used.
Ghalia has made several attempts to take her own life.
Past studies have indicated that the suicide risk among HIV-positive patients may be higher than for those with other chronic illnesses. The risk can increase in particular during the initial weeks following a diagnosis of the disease, and when a patient’s health declines. It appears that since the introduction of highly active antiretroviral therapy (HAART), suicide among HIV-infected patients may be mediated more often by factors other than HIV, including depression, alcohol or other substance-related disorders.
In the past, Dr. Kamoun encouraged infected individuals to tell their friends. Now, he’s changed his mind. Even among the activists working for his organization, there are many who keep their status private. Their stories are hard to tell. “It’s hard, sometimes too hard, to hear their stories,” Kamoun says.
This piece originally appeared on HuffPost Tunisia and was translated from French.