In June last year, during an anti-stigma conference, Maged El Rabeiy announced that he had HIV, the virus that causes AIDS. In doing so, he became the first Egyptian to openly declare his struggle to the Egyptian public, giving the life-threatening virus a human face.
The announcement, which took even event organizers by surprise, was a bold move to break the national silence surrounding a heavily stigmatized virus that affects the lives of thousands of Egyptians.
A 2009 UNAIDS report estimated that around 11,000 Egyptians have HIV, but because of uneven distributions in the data pool, many estimate this number to be significantly higher. In Egypt, strong stigmas surrounds the HIV virus, due to its association with homosexuality and intravenous drug use, despite the fact that many housewives have HIV, and many children are also born with the virus.
“For a long time, I had been part of a marginalized community that watches friends and family die in silence and shame, with little to no response from the government, who claim HIV doesn’t really exist because Egypt is a clean, traditional, Islamic country,” he says. “They are in denial.”
In 2010, one of Rabeiy’s best friends who also had HIV took his own life out of shame.
“So, instead of trying to create more anonymous, indirect awareness, I decided it was time to say, ‘Here I am, in the flesh, now tell me I don’t exist.’”
Discovering the infection
Rabeiy, a 32-year-old Alexandrian, is funny, friendly and never misses an opportunity to express his passion for English literature. After graduating from Alexandria University 10 years ago, majoring in literature, he got himself a marketing job working at Mobinil.
A few years later, he learned that he had HIV, during routine medical tests for military service, leading to his immediate dismissal. The following months were the worst of his life.
“I couldn’t eat, sleep or go outside, and worst of all, I couldn’t tell anybody because I knew that people would despise me,” he says.
Around this time, Rabeiy joined the Friends of Life, an NGO that offers comprehensive support to victims of HIV, as a full time project coordinator. But he quickly noticed that anonymity surrounding members of the NGO seemed to be quite problematic.
“In other countries, you can openly say you have HIV, and then go to a hospital and be treated and provided with services: in Egypt, you cannot,” says Rabeiy. “Here your community will shun you, and most of the doctors won’t work with you, as they’re afraid of the virus, and the nurse will ask you to leave. So you have to stick to a small network of people out of the limelight, and I knew that nothing was going to improve that way.”
After the announcement
Having hoped his announcement would break the spell and inspire many others to do the same, only his good friend and colleague, Mostafa Abdel Rahman, also a member of Friends of Life, followed suit.
“I thought that with the changes going on in the country, I could encourage many people with HIV to publically confront the issue and inspire a real change in attitude, but that didn’t really happen,” says Rabeiy, who was made executive director of Friends of Life after the announcement.
Though the event was quite a media spectacle at the time, Rabeiy admits that it hasn’t really changed much for Egyptians with HIV, as even those who consider him a hero and praise and thank him in private, are still unable to publically disclose they have HIV.
“People say they are happy that they no longer feel alone, but that they are still ashamed to face society,” he says.
Nonetheless, Rabeiy does not regret the decision, saying it is probably the best thing he has ever done in his life.
“On a personal level, it has changed everything, because I know that the people who love me accept me for who I am, and not because of a lie.”
But despite silence nationally in the months following his announcement, Rabeiy has garnered international recognition and praise, keeping him very busy.
Over the past year, he’s been invited to AIDS conferences around the world to give talks. In March this year, he also received the German Annemarie Madison Award, which honors those who contribute to improving care for AIDS. The award, which is accompanied by 5,000 euros, is usually reserved for researchers working in the field, but in Rabeiy’s case, they made an exception.
But responses to his announcement have certainly not all been positive. It also inspired a plethora of insults and threats, often publically on the Internet, and even sometimes from people who he says also have HIV.
The insults Rabeiy describes are too despicable to print, often slating his family and his sexuality, and wishing him an ill fate. But he harbors no ill feelings towards others, explaining that these are just a symptom of a much larger issue in Egypt.
General public health awareness aside, Rabeiy says that fighting the stigma associated with HIV is vital. He believes that many of these stigmas are rooted in the media, particularly a series of movies that came out in the 1980s, after the first case of HIV was reported in Egypt.
“A Girl from Israel” was about an Israeli girl with HIV who came to Egypt to sleep with men and spread the virus. “Midnight Soldier” tells the story of a soldier whose son injects drugs and contracts HIV. It ends with the father killing his son as a sort of public service so that nobody else in Egypt contracts the disease.
Though he admits one movie from last year, “Asmaa,” portrays a young girl with HIV sympathetically, he says, “Negative movies have a much stronger impact on people. ‘Asmaa’ is great, and hopefully it marks the beginning of more films like that.”
Media aside, Rabeiy adds that the virus’ international association with homosexuality doesn’t help, because for Egypt, where homosexuality is more or less illegal, it presents a “double stigma.”
Access to treatment
Another problem that Egypt faces, quite aside from the fact that many doctors reportedly turn away patients for being HIV positive, is a lack of access to proper treatment. Patients continuously develop drug resistance, and Rabeiy, having had the disease for four years now, is one of those people.
“There is no longer the right treatment for me in Egypt, and staying here means I will certainly die, and so I will have to eventually seek asylum somewhere — if I choose to not die,” he says.
The conversation brings Rabeiy to tears. He loves Egypt, and has never left for more than a handful of days, offering a glimpse of the pain he usually covers up so well.
However, being the first to openly speak out about having the virus has afforded Rabeiy international attention and opportunities for treatment generally inaccessible to the average Egyptian with HIV. Whether or not this makes him “lucky,” a word Rabeiy often uses to refer to himself, is a difficult question to answer.
“It is a battle that has begun in my lifetime, but it will not end in my lifetime,” he says. “I don’t know how long I will be alive, but I hope that I have opened the door in Egypt for children of the future to one day say, ‘I am an Egyptian with HIV, here I am, and I also deserve to live equally.’”
The difference between HIV and AIDS
HIV (Human Immunodeficiency Virus) is the virus that is initially contracted which then attacks the body’s immune system. AIDS (Acquired Immune Deficiency Syndrome) is the term used to describe the resulting symptoms and diseases associated with a damaged immune system.
Transmission of the virus
The HIV virus can only be transmitted through bodily fluids like blood, semen and breast milk, and not saliva, sweat, or urine. Activities that allow HIV transmission include unprotected sexual contact, sharing of needles and blood transfusions. Hugging, touching and kissing will not transmit the virus.
In Egypt, according to UNICEF 2010 statistics, only 18 percent of males and 5 percent of females aged 15 to 24, the most at-risk age group, have basic knowledge of these facts and the virus itself.
UNAIDS reports that 11,000 Egyptians had HIV in 2009, less than 1 percent of the population, with about 500 deaths per year. But statistics are generally estimated to be four to five times higher due to poor access to proper data, partly due to governmental denial of its existence.
UNAIDS 2011 reports also put the MENA region among the top two regions in the world with the fastest growing HIV epidemic.