Keep quiet if you have AIDS or you will become an outcast

People who know they are HIV positive in Lebanon keep very quiet about the matter to avoid becoming social outcasts. AIDS is taboo. Anyone suspected of having the disease risks total rejection by their friends, family and colleagues at work.

Sara, a 40-year-old office worker in Beirut, knows all about that. She has been living with AIDS for the past 15 years and manages to keep going with the help of life-prolonging anti-retroviral (ARV) drugs. But the only person she has told about her condition is her sister.

“One has to be very selective,” said Sara, who spoke to IRIN on condition that we did not use her real name. “One has to constantly wear a mask,” she added. “We have no legal protection. “If anyone knew about my sickness I would be fired the next day. When I take my pills I usually say it is for my stomach.”

Sara, who is single, contracted the HIV virus from a sexual partner. And she even though she knows that her male partner was at fault for infecting her in the first place, she complains that Lebanon's male-dominated society expects her to feel guilty.

“Even a married woman who has been infected by her husband will be accused by her in-laws,” Sara said. “In such a male-dominated society no-one ever accepts that the man is actually the one who did something wrong.” “It is even harder on single women since it is seen as a fair result of their sexual misbehaviour,” she added.

The perception of AIDS as divine retribution for sins committed is widespread in Lebanon, according to Jocelyne Azar, a psychiatrist. “In the sub-conscious mind of the community, the disease is still seen as a punishment,” she said.

Nadia Badran, a social worker, said it was difficult for people living with AIDS, like Sara, to feel differently. Many of them suffered low self-esteem as a result of their feeling of guilt and this in turn meant they were reluctant to fight for their rights in society, she said.

“At the end of the day they come from the same environment that is judging them and which discriminates against them,” Badran said. “They have the same background, the same culture, so some think they are being punished by God.”

Silence and fear

AIDS is so deeply feared in Lebanon that in many hospitals, doctors keep quiet about the fact that they are treating people with AIDS in order not to scare off other patients. The medical director of a hospital in one provincial town told IRIN he was treating two patients for AIDS, but even his fellow doctors and nurses did not know this, let alone the general public.

“It might give the hospital a very bad reputation which would scare other patients away,” he told IRIN.

Doctor Khalil Masri, an infectious diseases specialist in Zgharga in northern Lebanon, sympathized with his colleague’s predicament. “The medical staff are not ready. They have zero culture in terms of HIV/AIDS patients. If they knew they would simply panic,” he said.

Secrecy also benefited the patient, Masri added, noting that “in Lebanon, confidentiality is quite often not respected.” Some Lebanese hospitals even turn away people living with AIDS because they are afraid to have anything to do with the disease.

Sara says she has first hand experience of that. Badran, who runs the HIV/AIDS programme of the health NGCO Soins Infirmiers et Developpement Communautaire (SIDC), says such rejection is quite common.

“Usually hospitals say they don’t have the proper skills or are not well equipped so they don’t have to deal with the patients,” she said.

Badran’s organization, whose name means Nursing Care and Community Development in English, has been working with HIV-positive people in Lebanon since 1994. It runs a confidential telephone hotline, an HIV testing centre and a counseling service for people living with the virus.

Photo: Linda Dahdah

HIV-positive people face social rejection in Lebanon

“People can contact us anonymously through the hotline and ask all kinds of questions, Badran said, adding that HIV/AIDS was increasing problem among Lebanese youth.

“The number of people hit by the virus is not just increasing, it is also reaching younger people who often discover by accident that they are HIV positive,” she said. “We try to help patients in need, paying for food, healthcare and medication,” Badran said.

Unreliable statistics

Given the secrecy and social taboos surrounding AIDS in Lebanon and the Arab world in general, it is not surprising that statistics regarding the number of HIV-positive people are incomplete and unreliable.

According to the Lebanese government’s National AIDS Control Programme (NACP), there are 813 people registered as HIV positive in this country of four million. Of these, 81 percent – an abnormally high proportion – are male.

However, UNAIDS reckons there are more than three times as many people living with the virus that causes AIDS in Lebanon. It estimates there were 2,800 of them at the end of 2003. Badron believes the real figure could even be higher since many people are unaware that they have been infected with HIV and only discover their condition by accident.

According to the NACP, nearly 79 percent of all known HIV infections in Lebanon result from sexual intercourse – 56 percent from heterosexual encounters and 23 percent from single-sex couplings. It believes that the overwhelming majority of HIV positive women in Lebanon were infected by their husbands.

On paper at least, the government has adopted a benevolent official attitude towards people living with the HIV/AIDS. They are entitled to free hospital treatment and free ARV drugs if they need them.

However, Sara said that hospital beds paid for by the government were not always available when they were needed. She also noted that some types of treatment, such as opportunist infections caused by a weakening of the body’s immune system, and regular health checks had to be paid for by the patient.

“We are supposed to have at least two check-ups per year, depending on the state of our health and they cost a minimum of US $300 a time so many patients only end up having one check-up per year,” Sara said.

Furthermore, HIV-positive people do not enjoy any legal protection in the workplace. The possibility that Sara could be sacked by her boss if he discovered she had AIDS is a real one.

Disruption of ARV treatment

Badran, meanwhile, complained that the supply of free ARV drugs from the Health Ministry to about 200 registered users was often disrupted, forcing many of them to buy the drugs at commercial rates of up to $1,200 per month from pharmacies. Those who could not afford that much money simply interrupted their treatment, she added.

“A month ago there was a five-month shortage of one of three drugs used in the triple drug cocktail due to a funding shortage at the (Health) Ministry,” Badran said.

Photo: Linda Dahdah

Singing about AIDS in the musical play Imran 2005

Mostafa Naquib, the director of the government’s AIDS control programme, blamed this break in the pipeline on budget cuts. Masri, the infectious diseases specialist, said many people living with AIDS had not registered with the Health Ministry and prefered to purchase all their ARV drugs abroad. They did so to avoid disclosure of their condition.

“Many patients buy their medicine from abroad to avoid having to declare themselves,” he said. For those who suspect they may have contracted the HIV virus, free testing is widely available at family planning clinics and hospitals, but Badran noted that unlike SIDC, which makes people pay for their tests, these medical facilities do not provide counseling afterwards.

Several initiatives are afoot to try to destigmatise AIDS and reduce people’s fear and ignorance of the disease. Condom usage is already reasonably widespread. One recent study of knowledge, attitude, beliefs and practices indicated 30 percent of the sexually active population used condoms.

“Around 23 NGOs are working in the field now,” said Naqib at NACP. He noted that an increasing number of them were targeting women.

Christians and Muslims unite to fight AIDS

One unusual AIDS awareness initiative has been launched jointly by group of Christian and Muslim clergymen. They have compiled and printed a separate brochure on AIDS for each religion addressed to all members of the community.

“We want to reach the patient, family, friends, the clergymen and society as a whole,” said Father Hady Aya, a Maronite Christian priest who is an active member of the group. “We reject the idea of the sinner being caught by his sin and punished by God,” Father Hady said. “Society should understand that these people are not from another planet. They came from among us and are part of us.

“We do of course try to dissuade them from having sexual relations (outside marriage), but if that doesn’t work we advise them to protect themselves,” he added.
 
Another initiative aimed particularly at young people is a musical play called Insan 2005. This has just been launched in Beirut, with backing from the World Health Organisation. The musical tells the story of an Arab man called Insan who finds that he has been infected with the HIV virus. He then falls in love with a girl and decides to get married. This situation confronts him with many awkward social issues, such as infecting his partner, telling his parents about his condition and fathering children.

Gradually, people are starting to talk more openly about AIDS in Lebanon. But Sara says there is still a lot of prejuidice to be overcome and this will only be achieved by bringing discussion of HIV/AIDS further into the open.

“AIDS should not only be mentioned in the media on 1 December, on International AIDS Day,” she said. “It should be an everyday subject. This is the only way to fight it and for us to have some hope of living freely.”