Breaking the wall of silence around AIDS in Egypt

From The Daily Star, Lebanon

CAIRO: Most Egyptians don’t know what HIV/AIDS is. Those who do will often express disapproving views of AIDS patients, or groundless fears of contracting the illness from them. As activists and health specialists all note, the greatest obstacle facing AIDS prevention efforts here is general ignorance on the subject, and the accompanying stigma.

“Nancy” and “Rehab” ­ not their real names ­ are students at the French University in Cairo. Asked if she knows anyone who is HIV positive, Nancy says “no, thank God.” Neither of them know anyone who has been tested for AIDS, and they are not familiar with the AIDS hotline (a service run by the Health Ministry’s National AIDS Program).
Nancy says the topic is not one she’d discuss with her family; however, Rehab’s mother told her she “could catch the AIDS disease here in Egypt. Public bathrooms … you could easily get it from there. You have to take care.”
Rehab adds, “If someone is actually infected with the disease, you could easily catch it. Actually, it is quite risky to get in contact with a lot with them. I heard about a girl who caught HIV/AIDS from a manicure.”

Another young female student explains, “It’s not spread (in Egypt). We have traditions. It’s very rare.”
So far, this is true. Egypt has a low AIDS prevalence rate. The only figures available, provided by the Health Ministry, set the official figure at about 1,500, although they estimate the actual number to be around 8,000 cases. There is disagreement over the accuracy of these numbers, particularly regarding the official assessment (or lack thereof) of at-risk groups such as sex workers, men who have sex with men, and drug users. One UNDP official says there are “some conflicts in the figures,” adding: “We aren’t confident they reflect the situation.”

Maha Aon, the Focal Point at UNAIDS, says the 1,500 figure is “just the tip of the iceberg,” adding that UNAIDS recent estimates were significantly higher. Yet even the UNAIDS figure remains safely within the “low prevalence” range ­ i.e. below 1 percent of the population.

However, although Egypt has a low incidence rate, it could be a country at high risk. As one local sociologist says, “people think HIV/AIDS comes from foreigners or gays and is not a risk for them.” Consequently, they take no precautions. Aon says: “All the risk behaviors and risk factors are rampant. People don’t even consider AIDS. It doesn’t even cross their mind.”
Yet there are numerous factors that make Egypt vulnerable: weak systems of surveillance for all sexually transmitted infections (STIs); a seasonal influx of foreign and Gulf tourists, with the sex tourism that follows; many Egyptian migrant workers; extremely low levels of condom use; a sizeable population of sub-Saharan immigrants and inadequate precaution applied in blood banks and hospitals.

Aon says that 24 percent of infections take place in hospitals (compared to 5 percent worldwide). This is “unacceptably high.” But “the Health Ministry has responded very strongly.” An Infection Control Unit has been created, and a campaign for safe blood initiated. According to Aon, this mode of transmission should soon be under control. The main concern remains that of sexual transmission, which is much harder to address directly due to the sensitivity of the topic.
One of the few public awareness campaigns on HIV/AIDS, facilitated by the WHO a few years back, has been roundly criticized for the opacity of its message. In a series of print and TV ads, Egyptians were encouraged to “Protect Your Family” and were told “I Care: Do You?” No references where made to modes of transmission or prevention methods. As one local HIV/AIDS specialist commented: “The AIDS campaign continues to provide no information to teach people how AIDS is spread or to help people protect themselves. “Protect your family?’ How? What should you do? If you can figure it out, please let me know.”

Nonetheless, information on AIDS can be spread, Aon argues, “as long as it’s done in a culturally appropriate way. You can’t go on TV and say ‘use a condom when you sleep with a sex worker.’”
Some progress has been made. The National AIDS Program, headed by Dr. Nasr al-Sayyed, administers a toll-free AIDS hotline, answering any question relating to the disease. That has been a groundbreaking model in the Middle East. At its peak, the hotline received as many as 1,000 calls a month, mostly from young, urban, unmarried males, although recently, according to Aon, “the number of calls is decreasing.” This may be “because it’s not advertised or promoted enough,” she says (the hotline number is printed on stickers in metro stations and ads in newspapers, but they are not common).

Sayyed himself emphasizes the positive developments he has seen over the last 12 years. Back when he started working with HIV/AIDS, 80 percent of infected were rejected by families. Today, patients often come in accompanied by relatives.

“I feel there is a slight change,” concurs Ghada al-Boghdady, program coordinator of the UNDP’s in-house AIDS awareness program, We Care. “When we started (our events), people were really silent. Now, drivers and messengers at UNDP have told us ‘you should come to our neighborhood.’”
The National AIDS Program has also, in cooperation with the United States Agency for International Development (USAID), planned the creation of at least 15 voluntary testing centers (VTCs). Cairo’s first VTC should open “within two months” according to a USAID official. The VTCs are a necessity if testing is to be encouraged.
Currently, the only two options are private labs or the government lab downtown, created to administer the obligatory testing of migrant workers required by Gulf States and offers no anonymity ­ ID cards are required, and the results are reported to the Health Ministry.
Another positive development has been the lauded efforts of Caritas Alexandria, which has created anti-AIDS clubs in 23 Alexandrine schools, with 100 student members in each club. The students have discussions and seminars with social workers, school doctors and Caritas workers. According to Aziz Wahba, the head of the program, the young people “know a lot of things from TV. What they (don’t know is) that HIV is like other diseases, that HIV patients can live with us, can work with us, that they must deal with them as human beings. They don’t know how to deal with HIV patients.”

Although Wahba says it is not possible to discuss topics such as condom use, there are indirect ways of providing information. Caritas also sponsors a monthly support group for AIDS sufferers, which has as one its goals to bring AIDS patients together to gain greater leverage on issues such as the availability of medication.
Anti-retroviral drugs are available from private clinics, but are prohibitively expensive (at least $1,000 a month), and their administration is unregulated. If you aren’t affluent, catching AIDS in Egypt is a near-death sentence. The public sector is currently “in negotiations,” says Sayyed, to provide the first 30 Egyptians patients with the drugs.

Nonetheless, many patients are extremely reluctant to speak of their condition to friends or family, let alone to the media or in public forums. Sayyed mentions the story of one patient who was interviewed by the youth magazine Magalet al-Shabaab two years ago. The reporter ran a four-page story with the young man’s picture, home address, the fact that he had contracted the disease through a sexual encounter, and the names of other members of his family. As soon as the magazine came out, the young man was subjected to severe harassment.

All of Sayyed’s patients are reluctant to talk to the press now. “These people end up getting kicked out of their homes, losing their jobs. It’s a huge problem for people living with AIDS to admit that they have it,” says Aon.
This is one of the reasons the UNDP has launched its Break the Silence campaign this year, holding several events with the media and artists (such as actors Hussein Fahmy and Mona Zaki) to sensitize them to the problem of AIDS and hopefully turn them into spokespeople on the issue.
Another goal is to create a network of NGOs working on developmental, health and women’s issues who are interested in promoting the AIDS awareness efforts.
Recently, five NGOS attended a UNDP-sponsored training, in which a professional storyteller from Namibia, who specializes in children’s stories tackling AIDS, helped them develop Egypt-specific stories that they might use in their own work.

“This is a golden opportunity,” Aon concludes. “Prevalence is still low. Prevention is much cheaper than treatment. If we wait a few years, it’s going to cost much more and be much harder to control. We need to deal with this before it becomes a big problem.”

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