CAIRO — As the delivery date neared for the birth of her first child, Rose was stuck between her conscience – she didn’t want to lie – and the practical necessity of giving birth to a healthy child.
Rose thought about telling her doctor that she was HIV-positive – the routine blood tests her obstetrician had ordered didn’t screen for HIV – but she knew the risk of that: When she sent a friend to pretend that she was HIV-positive and pregnant, the doctor told the friend he didn’t deliver the babies of HIV patients.
So on her delivery date, she told the doctor she was a hypochondriac and that it was important to her that the doctors take extra precautions during her delivery.
“Every pregnant woman usually feels excited and can’t wait to get her baby delivered, except me; I was panicking,” she said. “It was a horrible feeling to go to a doctor and tell him that I am not infected. I felt dishonest.”
HIV education has become an international cause throughout Africa, where the rate of infection devastated many sub-Saharan nations but is being brought under control by concerted efforts on prevention and treatment. Similar efforts, however, are largely nonexistent in North Africa and the Middle East, and AIDS activists now worry that the rise of a conservative Islamic government in Egypt, where former longtime Muslim Brotherhood member Mohammed Morsi became the country’s first democratically elected president over the summer, will make matters worse.
AIDS is still considered a disease of homosexuals and prostitutes here. Doctors are taught that it’s a foreigner’s disease, and they receive little training in how to treat such patients. Most doctors refuse to treat HIV patients or to deliver their children. Egyptian officials continue to insist that there’s no AIDS problem here; to do otherwise would force the government to confront such taboo subjects as homosexuality, safe sex and what Muslim ethics say about how to treat the ill, however the disease is contracted.
“When the government becomes more religious, they believe AIDS is a punishment from God. But being religious starts with respecting human rights,” said Noor, Rose’s husband, who contracted AIDS from a blood transfusion when he was a child. “We are not a part of the revolution. They isolated us. We did not isolate them.”
Egypt’s attitude toward AIDS and HIV can be summed up in its movie industry. There have been only three films that featured HIV patients. In the first, when a man finds out that he’s HIV-positive, he kills himself. In the second, a man kills his HIV-positive son. The third, in which the protagonist toys with publicizing her HIV status, has had limited distribution.
Rose sheepishly explained, her veiled head bowed and looking at the ground as her son tried to teach himself to walk, that when she told her best friend early on that she was HIV-positive, she never heard from her friend again. Rose and Noor, who live in a five-story walk-up apartment, live in fear that their neighbors will learn of their infections. They agreed to share their story only if their real names weren’t used.
Rose’s family doesn’t know that she’s HIV-positive or that her first husband infected her eight years ago. They don’t know that Rose and Noor met at an AIDS seminar or how miraculous it is that their two young children are HIV-negative because Rose demanded cesarean births and didn’t breastfeed.
Every day Noor and Rose spend hours educating themselves, largely through the Internet, about the disease and how to get the medicine they need, all while hiding medicine and medical records in their home lest someone discover their secret. They talk about their condition only with other HIV patients, sometimes traveling hours to private seminars where patients reassure one another that they can’t spread the virus to their loved ones through touching or through sharing glasses of water.
HIV infections are climbing in only two regions of the world: Eastern Europe and the Middle East. The United Nations estimates that as many as 570,000 people in the Middle East have HIV or AIDS, 40 percent of them women. According to the United Nations, 70 percent of the men infected are married to women, often to hide their homosexuality. In Egypt, the Ministry of Health says there are 2,700 cases, but the true number is estimated conservatively at more than four times that – and growing.
“The world is talking about the beginning of the end of AIDS. We are not,” said Wessam not el Beih, the U.N.’s AIDS country director for Egypt.
According to one survey, 57 percent of doctors here think that HIV can be transmitted through a mosquito bite, according to a footnote in a U.N. report. Many patients, unaware of the symptoms or risks, learn only by chance that they’ve been infected, when a blood test required for a visa or a medical procedure comes back positive.
The U.N. is leading the AIDS education effort here, and there have been efforts by individuals to bring attention to the issue. Last year, it provided some funding for the $1 million film about the woman who contemplated becoming the first person to admit on television that she was HIV-positive, based on a true story. She never had the chance; she died because she could not find a doctor to perform gallbladder surgery on her.
Ehab Abdel Rahman, the director of the HIV program at the Ministry of Health, balks at the suggestion that Egypt isn’t doing enough. He notes that in a country of nearly 90 million people, the number of cases is small. Patients receive the medicine they need. Any shortage is a shipping problem, not a social one. The blame, he said, lies with patients who try to diagnose and medicate themselves.
“We always ensure there isn’t any defective or shortage of medicine. It has never happened,” Rahman said. “Our goal is to have stigma-free hospitals.”
But Omnia Kamal, a Morsi adviser on women’s issues and a member of the committee that’s charged with drawing up the country’s new constitution, offers a different view. In a nation plagued with economic programs and a litany of social issues, AIDS is not a priority, she said. There are more cases of hepatitis B and C, for example, which also need to be addressed.
“We have to start with economic issues, and then we will deal with social issues,” Kamal said. “For a proper democratic transition, you can’t start by changing everything right away.”
To be sure, there’s a connection between fixing the government and confronting social issues. Rahman said the government spent $8 million a year on AIDS prevention and medicine. But patients said they weren’t seeing the effects, and many think that the system, like most government institutions, is corrupt.
Amr Salama, the director of the movie “Asmaa,” about the woman contemplating publicly admitting that she has AIDS, had never met an HIV-positive patient when he started the project seven years ago. When he began working on the film as a 28-year-old, he feared that he’d contract the virus just by coming in contact with HIV patients.
It was on a train ride back from Alexandria, where he witnessed a furtive meeting of HIV patients, that he conceived of his film, after hearing scores of stories from people seemingly just like him, and he settled on the woman the group spoke about, who’d just died. She was an average Egyptian, a cleaner at the airport, who was forced to resign when her co-workers learned that she was HIV-positive. Before she died, despite the objections of her family, she thought about going public with her struggles.
Getting funding for the project was difficult. So was finding actors. He forced those who played HIV-positive patients to meet carriers of the virus. Those who played everyday Egyptians weren’t allowed to meet carriers, to keep them in character, he said. The government almost didn’t allow him to film a scene at the airport where Asmaa’s co-workers voted that she should resign, leaving money on the floor for her out of embarrassment over what they’d done. Even once permission was granted, Salama’s crew was allowed only limited time to film.
He rewrote the script more than 30 times, he said, the storyline evolving as he learned more about the issue. At one point, he featured a homosexual character, but he cut him out at the last minute, fearing the audience couldn’t handle it. In the film, Asmaa contracts the virus from her husband, who was infected when he was raped in prison. Through all the rewrites, the end of the movie stayed the same, Salama said: Asmaa appears on television and tells the audience, “When I die, it will be because of your illness, not mine.”
The first screening of the film was on Jan. 24, 2011, the day before the uprising here against the former regime of Hosni Mubarak began.
“ ‘Asmaa’ was such a discovery for me. It was about finding a character I would have never met in real life,” Salama said. “It was about society. Society was one of the main characters of the film. It was the villain.”
The movie is hard to find here. It didn’t play at major movie houses. It isn’t part of the nation’s cinema lexicon. But Salama said he was optimistic that change was coming.
“We think if we say we have a problem it will smear the image of Egypt. If we do an awareness campaign, that means we have a problem,” Salama said. “We are in a period of self-evaluation. There is a dynamic happening. You can feel it in the air.”
So far, however, there’s no change within the medical community.
At Cairo’s Imbaba Hospital, a public facility, one doctor, Amir al Masry, said HIV patients arrived there daily. Many have treated themselves incorrectly, rendering the medication ineffective. Shortages are only worse since Morsi was elected, Masry said: “There is no trust between the patient and the Ministry of Health. The patients accuse the ministry of stealing the money and the ministry accuses the patients of trying to draw sympathy.”
Even when HIV education reaches Egypt, the stigma is so widespread that it somehow stifles knowledge from disseminating. At Nehad Helmy’s women’s clinic, the examination room looks out to her office, where the wall is adorned with certificates of her HIV training. She first became interested as a master’s student, when no one would treat a pregnant woman who appeared at an Egyptian hospital with HIV in 1997. A hospital cleaning woman helped the woman deliver her baby, Helmy recalled, prompting her to begin studying HIV and pregnancy.
She and her husband moved to Holland, where doctors often specialize in HIV treatment. She earned one certificate after another, and she admired how patients there were treated like anyone else. Determined to bring that care to Egypt, she came home in 2009 and sought to open an AIDS clinic, but she couldn’t win government approval.
Now she’s afraid to advertise her HIV specialty for fear that no one else will visit her clinic. Instead, she treats HIV patients on the sly and sends test results to her friends in Holland for advice.
“There is no hope and no progress,” Helmy said. “Doctors think I am crazy for working on this.”
Perhaps because of that, the nation is peppered with people such as Noor, Rose and their friend Manal, who’s 34. Manal was applying for a visa to Saudi Arabia when she learned through a blood test that she was HIV-positive. When she begged her family to get tested for no reason in particular, they figured out her secret. For a time, Manal’s relatives feared that they could contract the virus just by touching her, and because of that Manal wasn’t always allowed to pick up her baby niece.
When she finally was allowed to hold the child, she moved to kiss her niece and a couple of drops of blood from a loose tooth fell out of her mouth onto the baby’s hand. Manal panicked and repeatedly scrubbed the spot, fearing that she’d spread the virus. She’s since learned more about the risks and has become a silent advocate within her home; her neighbors don’t know that she’s HIV-positive.
“People with HIV have a right to live,” she said.
Ismail is a McClatchy special correspondent.