In the middle of a crowded conference room, a thin young man stood up and slowly approached the podium. He smiled shyly at the audience sitting in front of him and then began to speak.
“Today I have found the strength and ability to stand in front of you without any fear or shame and tell you that I have HIV,” began the young man. “For why should a sick person be ashamed of their illness?”
And with this simple sentence Maged, a 31-year-old from the Egyptian city of Alexandria, landed the first strike on the wall of silence Egyptians have built around HIV/AIDS since the virus first made a blip on the screen in the 80s.
Maged’s courageous move is, in fact, the first time an HIV/AIDS carrier reveals his condition publicly in Egypt. And it wasn’t an easy thing to do, given the stigma and shame associated with the disease in a country that associates it with drug addicts, MSM, prostitutes and promiscuous men who sleep with foreign women.
In Egypt, because of the misconceptions surrounding the disease, many are still scared to interact with people who are HIV positive and victims are often fired from their jobs, thrown out of their homes and, in some cases, even die from neglect.
This veil of discomfort that has covered the issue of HIV/AIDS has led many to dub it the “silent disease,” because people simply refuse to talk about it. But times are changing.
Maged was speaking at a press conference held by the Forum to Fight Stigma and Discrimination against People Living with HIV/AIDS. The forum is the first coalition of associations and bodies working in Egypt on the issue of HIV-related stigma and discrimination and includes 14 organisations working in areas relevant to the issue, including reproductive health, substance abuse, legal and human rights and health organisations.
The coalition, which was formed a year ago, published Combating HIV/AIDS-related stigma in Egypt: Situation analysis and advocacy recommendations, a report which looked at the various forms of discrimination people living with the virus face while living in Egypt. They also produced a small booklet titled “Letters from Egypt,” which included testimonials of men and women living with HIV/AIDS in Egypt.
“The stigma and discrimination associated with HIV/AIDS is, in fact, the biggest obstacle we have in facing the virus and preventing it from spreading,” says Dr Amani Massoud, deputy director of the Egyptian Initiative for Personal Rights (EIPR) Right to Health Program and one of the members of the forum. “If we want to fight it, we need to know if it exists and how it exists.”
According to the 2010 UNCASS Progress Report, there were 3919 individuals living with HIV/AIDS in Egypt in 2009. The rate of infection however jumped 268 per cent between 1990 - 2010. About 49.5 per cent of infections in Egypt are a result of sexual relations; followed by 22.9 per cent specifically from homosexual intercourse, 4.6 per cent from contaminated injections through drug use and 1.8 per cent of the cases are transferred from a pregnant mother to her child, 5 per cent from blood transfusions and 8.9 per cent from kidney cleansing procedures.
Although the numbers of people living with HIV/AIDS are quite low in Egypt, it is difficult to get a truly accurate assessment of people living with the virus, because the stigma associated with the disease prevents many from being tested in the first place.
Dr Sany Kozman, a doctor who manages AIDS programs, says that this stigma may actually result in increasing the rate of infection.
“People are too scared to get tested and, so, the risk of infection may actually increase because they are doing things an infected person shouldn’t do,” he explains.
Add to that, says Kozman, many people infected with the virus refuse to get treatment because they are afraid that people would find out.
“The thing is, if an infected person takes medication, it will actually reduce the chances of them spreading the disease,” says Kozman. “So the stigma increases the infection rate.”
Self-stigmatisation and self-isolation is also a major problem that many HIV/AIDS carriers suffer; maybe even as bad as the stigma inflicted on them from others. According to the forum’s report, about 51.6 of those infected felt stigmatised, 42.5 per cent felt isolated and the highest percentage of all: 66.7 isolated themselves.
Because of this, most HIV/AIDS carriers are too scared to tell people close to them about the illness and end up confiding only to close family members.
Maged, who left his job as a human resources manager in a telecommunications company and now works in The Friends of Life, an NGO that reaches out to people who are infected, says that the fear of stigma often leads victim to live in their own private hell.
He says that he found out that he was HIV-positive three years ago and to-date, only close family members and a few friends know.
“It is very difficult to talk about, or even share your story,” says Maged.
Many victims are even scared to tell their families, although he says he is lucky because his family is educated and they supported, rather than condemned him.
“I told them as soon as I found out, because I was in so much pain. I felt like I was going to explode and I had to take the risk, even without being sure of their reaction,” remembers Maged.
However, he says that many others aren’t so lucky. Several of his friends were kicked out of their homes when their families found out.
“The family of one of my friends even refused to touch the door knob that he used to open the door,” says Maged. “It really is tragic.”
But, says Maged, victims of HIV in Egypt live in fear that they may be found out. Often, they even refuse to take their medicine because they are worried people will become suspicious.
“I can take a pill in front of my friend and tell him it’s a cold,” says Maged. “But if he sees me taking them every day he will begin to wonder and may find out. You think if someone finds out it will be a disaster and victims live in continuous fear that their condition will be revealed.”
This, says Kozman, is one of the biggest obstacles facing people trying to make peace with their HIV-positive status.
“HIV is connected with shame,” he explains. “Any sick person in the world can say they are sick, except people living with AIDS.”
He adds that often patients refused to tell anyone except medics. But if they think that they will get sympathy from them, they are often disappointed. Many health officials are still not educated on how the disease is transmitted and are, therefore, too scared to deal with patients.
“The big catastrophe is that the worst stigma people with HIV/AIDS face in Egypt comes from those who work in the medical field,” says Kozman. “Once they tell the doctor, they tell them to take medication instead of surgery, even if he knows that they desperately need surgery.”
But, says Kozman, many doctors are too scared not only to operate on infected patients, but also sometimes to even touch them.
Maged, can completely relate to this. About six months after he got infected with the virus, he needed to have a surgery, but couldn’t find a willing doctor.
“It was a normal procedure, but none of them agreed, none of them,” remembers Maged.
In fact, according to the forum report, people with HIV/AIDS are often denied care such as surgery and normal deliveries, or subjected to mandatory testing, verbal abuse or gossip while being treated. In one of the case studies in the booklet an infected man was ignored by the doctors and nurses. They refused to clean his room and told him to do it himself. The nurse would even toss his medication from the door and quickly leave out of fear of being infected.
Additionally, Egypt violates Article 8 of the Universal Declaration on the Rights of PLHA, which says that no testing should be conducted without the consent of the individual concerned. However, Egyptian police often force people who are arrested to be tested.
In one case that shocked the world, 12 men were being tried. Nine of them ended up getting prison sentences of one - three years on charges for “habitual debauchery,” and forced to involuntary HIV testing. The five who tested positive were locked in a hospital and chained to their beds for several months.
In another case, an HIV-positive man was arrested and charged with immoral behaviour and forced to a forensic examination because they associated AIDS with same-sex relations. He was then slammed with a three-year jail sentence and once released from prison was denied access to his children.
Victims of HIV/AIDS do not fare any better at work. According to the report, a study conducted about HIV/AIDS and the workplace, revealed that only 30 per cent of study participants said that they would agree to work with someone who is HIV-positive and 53 per cent said that they “would not feel comfortable,” working with someone who is infected.
People with HIV/AIDS are also often denied positions in the police, army and Suez Canal Committee. In one of the case studies an HIV carrier was fired from his job in a restaurant because the owner was worried that he would transmit the virus to customers and tarnish the restaurant’s reputation.
Family members are also a major obstacle for people living with the virus in Egypt. In the booklet produced by the forum, one woman’s family took her children away from her after she tested positive. She was infected by her husband.
In another case an HIV-positive widow was forced by her husband’s family to leave the children out of fear that she may infect them. One of her daughters’ husband divorced her when he found out that his mother-in-law has HIV.
In another case, the family of an HIV carrier cut him from their father’s will and kicked him out of the house. When his fiancé, agreed to marry him despite his illness, his brothers went to her workplace and informed her colleagues that she is married to a person with HIV and may infect them.
The media itself does not in any way help HIV victims. In fact, says Massoud, in many cases it spreads inaccurate information about the disease.
In, fact a study conducted on the coverage of HIV in local media found that the media tended to sensationalise the disease, misinform readers about the modes of transmission and describe it as something fearful and deadly that afflicts sinners and criminals.
Egypt’s television and TV programmes did not fare any better. Early HIV campaigns on TV fed the fear rather than informed the viewers. HIV awareness ads usually featured spooky horror movie theme music and special effects that included everything from lightening to banging doors and windows.
Movies, such as Love in Taba, propagated the preferred theory of Egyptian media; that HIV/AIDS is a foreign conspiracy. In the movie, a group of married male friends go to Taba for vacation, cheat on their wives with several hot tourists, only to find out that they intentionally infected them with the virus.
All this stops infected patients from seeking help. They live in increasing isolation when, in fact, there is a lot of help out there.
Maged says that after being diagnosed he got a lot of relief from support groups. It’s nice, he says, to know that others out there are suffering, too. Now, he works to help others cope.
“Sometimes you see someone who just found out and their soul is just destroyed,” says Maged. “But when they see you and they see that you are not dead and in fact live a purposeful life, you become a role model and you give them hope to carry on.”
He and others are also trying to eliminate common misconceptions about the disease. One of those is that being HIV positive, means a person will die: “Not true,” says Maged, “with proper care, a person who is infected can live a normal life.”
“People who are newly diagnosed often think that they just have to sit and wait for death,” explains Maged. “They feel that they may infect someone by eating with them from the same place, but we tell them that they can live a healthy normal life if they want to.”
But says, Maged, it is still a long road rocky road for Egyptians suffering from HIV/AIDS. Although, he announced his condition publicly, he still requested from print journalists in the conference to refrain from using his full name. He also requested that the TV journalists who filmed him to not reveal his face.
“It’s not the HIV that I am ashamed of, but the stigma that comes with it,” says Maged. “If there is no stigma I would shout it to the whole world.”
He is a sick person, someone who is suffering from a disease, so why can’t he get people’s sympathy? he asks. Why is it only shame and rejection that he feels?
“If someone has Hepatitis C and has an emergency and takes a cab to the hospital, the driver will be very sympathetic,” says Maged. “But if it is someone with HIV, the driver will probably kick him out and burn the car after.”
But, Maged is still clinging to hope that one day people will stop judging him.
“I want to be treated like a human being. I want to have the right to work, to have a home and children,” he says. “I want to be able to walk in the street without worrying that people will find out about my secret. But most of all I want to stop living in fear.”