HIV Positive Tunisians Struggle Against Misperceptions

By Simon Speakman Cordall | May 5 2014 Share on Linkedin Share on Facebook Share on Twitter Share on Google Share on pinterest Print

Tags: aids ,hiv ,public health ,SIDA
Anti-AIDS campaign slogan reading: "Firmly Against HIV." Image credit: Tunisia Live

Anti-AIDS campaign slogan reading: “Firmly Against HIV.” Image credit: Tunisia Live

In Tunisia, government and civil society band together to combat the spread of HIV and AIDS within the country, but social stigmas and a lack of education continue to impede treatment efforts.

Just dealing with my HIV is like a second job, Ines, a woman living with HIV, told Tunisia Live. People know nothing about it. They have no idea how it's transmitted, the health staff are the worst. They actually condemn the patients who come to them for help.

The stigma is a daily reality for her. Sitting in an upmarket cafe in the relatively affluent suburbs of Tunis, Ines, whose name has been changed for this article, told Tunisia Live of the daily burden involved in managing her virus, while hiding that work from friends, neighbors and colleagues.

It's there. It's in their heads. If you live with HIV, you must be a prostitute, a drug dealer or gay. It's the mentality, Ines' friend, Sofia, (also a pseudonym), who is also HIV positive, said.

This has nothing to do with religion, she added. Religion comes afterwards.

If you tell people you're HIV positive, you won't get a job. If you tell people in your job that you're HIV positive, they'll find a reason to get rid of you. Even my family doesn't know I have HIV, Sofia said. [display_posts type=”related” limit=”2″ position=”right”]

As of 2012, the latest statistics available, the UN estimated that between 1,400 and 3,800 were living with HIV/AIDS in Tunisia. Since 1985, according the Tunisian Ministry of Health, 1,900 people have been registered as having the disease. Of these, 1,300 are able to work and study normally.

Those fighting HIV and AIDS say ignorance is helping the disease spread.

The biggest problem that is faced is the mentality of the society, seeing HIV as a dangerous disease that kills people, Hayet Hamdouni, who heads the Tunisian Ministry of Health's national program for fighting HIV, told Tunisia Live. This bad mentality does not allow us to discover the disease in its early stages. Thirty percent of affected people are detected in the late stages of the disease.

HIV drugs are distributed for free in public hospitals, Hamdouni said, adding that examinations and treatment of the disease are also free. “On average , an [HIV positive] person costs the state 1,700 dinars ($1,061) per year.

I have been living with HIV/AIDS since 2007 and I learned about my disease when I got tuberculosis. The doctors told me this in a shocking way with no respect to my feelings. My health began to deteriorate more and more, in addition I was afraid of my family’s reaction, especially because they think I’m still a virgin because I'm not married. Our society cannot give me any mercy. – Anonymous testimony to the Tunisian Association to Combat Sexually Transmitted Diseases and AIDS (ATL MSD SIDA).

Men and women aged 30 to 44 have been the most affected, Mohamed Lassaad of the Joint United Nations Program on HIV/AIDS (UNAIDS) Tunisia Office told Tunisia Live.

While Tunisia is a low prevalence country [¦] surveys indicate a concentrated epidemic within key groups, including men who have sex with men, people who inject drugs, and sex workers, he said.

Tunisian celebrities in an ad campaign stating "SIDA Matters to Me Too"

Tunisian celebrities in an ad campaign stating “SIDA Matters to Me Too”

“After the death of my husband my journey of suffering began when his family repudiated me and my children, and they attacked and beat us, then we were kicked out the house. We are now living in the street, homeless, depending on the righteousness and charity of some people and sometimes living in the open without food or clothing. – Anonymous testimony to ATL MSD SIDA.

I think most Tunisians have heard of HIV but most of them lack practical knowledge related to the infection, said Zied Mhirsi, chair of the Global Network of Researchers on HIV/AIDS in the Middle East and North Africa, and a co-owner of Tunisia Live. They don’t know how to get a free and anonymous test. They don’t know that treatment is free and life expectancy is high.

I have been living with HIV AIDS since 2013. I have known since the death of my three-month, five-day old baby at the Children’s Hospital in Bab Saadoun, and I became infected with HIV through a blood transfusion after bleeding occurred in me during the birth of my daughter in the Aziza Othmana hospital in 2012. The doctors discovered that my child is a holder of the virus, which necessitated me and my husband to undergo HIV testing. The result was that everyone is infected and they found that I carry HIV AIDS. – Anonymous testimony to ATL MSD SIDA.

In Tunisia, the government and civil society organizations distribute free syringes for those who inject drugs, free condoms, and provide free and anonymous testing for those at risk, Mhirsi said. People living with HIV are provided free care and treatment as well as some social benefits, including free transportation and food stamps, he added.

Free medication notwithstanding, Ines says that hold-ups in the bureaucratic process can exert a heavy toll.

We always need to change medication. Sometimes people just build up a tolerance to their treatment. Ines said. This means they need to change their drugs and, for whatever reason, the new drugs don't always arrive when we need them.

The Ministry of Public Health, however, says that the necessary treatments are available.

Medical drugs are always provided, Hamdouni of the Ministry of Public Health said.

I have been living with HIV AIDS since 2007. I was married and I have two sons. After several years of marriage, my husband was very ill and his health deteriorated so much, we went to the hospital. After doing a lot of tests and analyses, it was proved that he was infected with the virus. A few days after his death, doctors conducted tests for me and my sons. I was shocked to discover my disease, and since I started my journey with the torment of a society that does not have mercy and his family, which refused to accept us.

It did not stop at that. Even my sister accused me of moral corruption because of the virus, and then she and my brothers kicked me out of my father’s house, where I haven't been since. I was also exposed to many instances of stigma and discrimination. For example, while I had to stay in hospital for several days, […] they put up a banner reading, in French, ˜Beware: Sick with AIDS.' – Anonymous testimony to ATL MSD SIDA.

Lassad believes the real battleground against the disease remains in people's minds.

Although secondary school curricula includes reproductive health and HIV aids courses, they are usually bypassed, superficially taught, or just not considered as a priority, Lassad said. Specialized NGOs, although active in university campuses and schools, are not able to have large coverage. A 2012 youth survey estimates that only 5.3 percent of young women and men aged 15 to 24 can correctly identify ways of preventing the sexual transmission of HIV and reject major misconceptions about HIV transmission.

“I got HIV/AIDS when a delinquent locked me up and then raped me for a period of not less than one month. The authorities believed it would be useful for me to spend a few days in the psychiatric hospital to fully recover from my psychological problems. But instead of recovery, I suffered more and more because I was again victim of rape by other psychiatric patients in the hospital. Then I discovered my infection. – Anonymous testimony to ATL MSD SIDA.

Mhirsi believes policy changes are needed to better address HIV/AIDS in Tunisia, including reforming the country's anti-sodomy laws, regulating sex work, and allowing opioid substitution therapy for drug users.

Laws protecting HIV people’s rights need to be promulgated and religious leaders need to be sensitized on the importance of fighting HIV stigma instead of fuelling it, he said.

Aya La and Bilel Sfaxi contributed reporting.

For more information contact ATL MSD SIDA here:

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