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Note: Shereen El Feki wrote the UNAIDS report Standing Up, Speaking Out: Women Living With HIV in the Middle East and North Africa. This article is adapted from that report.

(July 2012) Amal has been HIV positive for more than two years. She lives in Beirut, or at least she used to. “We can’t pay the rent on our home in Beirut anymore,” she said sadly, “Our financial level is zero.” HIV is both the cause of her family’s departure from Lebanon’s costly capital and one of the main reasons for their desire to remain.

Amal’s husband was unaware that he was infected with HIV, until fatigue and spiking temperatures sent him to the doctor. “He spoke to his supervisor at work about his situation,” Amal said. “They asked him to resign.” The family is now struggling to make ends meet, since Amal’s condition means that she can no longer work either.

Money is not their only problem. Amal also has bone and breast cancer, a worry for her as she contemplates the future for her young son and daughter. While her husband’s family is aware of his condition, she has told her relatives only about her cancer, because they are too traditional. But financial concerns mean that she and her husband are moving back, taking them away from their doctors and treatment.

Amal is one of 140 women from across the Middle East and North Africa (MENA) who shared their stories with MENA-Rosa, a new initiative in the region to help women living with HIV connect with one another, and to raise awareness of their needs among decisionmakers. Their experiences are highlighted in a new report, Standing Up, Speaking Out: Women Living With HIV in the Middle East and North Africa, published by UNAIDS, and presented at the XIX International AIDS Conference, held from July 22-27, 2012.

According to UNAIDS, women are thought to account for roughly 40 percent of the estimated 340,000 to 540,000 HIV infections in the MENA region.¹ Their numbers are set to grow: MENA is one of only two regions of the world where new HIV infections and AIDS-related deaths continue to rise. The majority of countries in MENA are witnessing concentrated epidemics, among most-at-risk-populations, and in most countries, sex is the main route of transmission. This means that women are affected directly as injecting drug users or sex workers; and indirectly as the sexual partners of clients, injecting drug users, or men who also have sex with men. Wives like Amal are hit particularly hard: In a number of countries in the region, the majority of women living with HIV have been infected by their husbands.²

A complex set of social, economic and cultural factors make women across MENA especially vulnerable to HIV. Female literacy and education have indeed advanced over the past decade, but women do not have a significantly greater presence in the workplace. Female unemployment rates are at least double those of men across the region, and even higher among female youth. Economic insecurity increases women’s vulnerability to HIV. Condom use is rare within and outside of marriage; significant proportions of women have been shown, in studies across the region, to experience gender-based violence, both at home and in public places.³

Also putting women at risk are cultural norms that favor men, mistakenly cloaked in religion and reflected in national law in many countries. This is particularly true when it comes to questions of sexuality, where women are held to double standards of virginity and sexual monogamy. Young women in particular have fewer opportunities to seek out information on sexual and reproductive health, a situation reflected in significantly lower levels of knowledge of HIV/AIDS than their male counterparts.⁴ Social constraints—particularly on unmarried women—make it difficult to access sexual and reproductive health services, including HIV prevention and testing.

Women living with HIV face many personal, social, and financial challenges. Stigma and discrimination is even fiercer against women living with HIV than men, given societal expectations of female behavior and a popular association between infection and “illicit” practices, such as sex outside of marriage or drug use. Family members and neighbors can be particularly harsh, which makes women reluctant to reveal their situation to others. As one participant in the MENA-Rosa initiative, from Sudan, bluntly stated: “I would rather be shot than live with this disease. People do not know AIDS; for them, it means illegitimate sexual relations.”⁵

Those women who do work can find themselves swiftly out of a job should their HIV status be disclosed. Even more vulnerable are the millions of female migrants and refugees across MENA, who often lack even meager support offered to local women and are further discouraged for coming forward for testing or treatment because of laws in a number of host countries that either prevent entry or force the departure of those with HIV.

Medical care is already a problem for people living with HIV in most countries in the region, with scarcely 10 percent of those eligible for treatment with antiretroviral therapy receiving the medicine.⁶ Stigma and discrimination are pronounced among health practitioners and particularly difficult for women during pregnancy and delivery. These problems extend to their children as well, especially those who are themselves living with HIV, since pediatric AIDS care is underdeveloped in MENA.

Law, religious institutions, and media could help women to overcome many of these hurdles; in practice, however, they offer little assistance to many in need, and often reinforce stigma and discrimination. One institution that is making a difference, however, is civil society. Groups like MENA-Rosa are advocating for change. Among recommended reforms are better access to quality education and employment for girls and women to reduce their vulnerability to HIV, and financial and social support to women as caregivers. Women themselves are urging guaranteed access to the best available care for HIV, including sustained antiretroviral therapy, treatment for opportunistic infections, and viral monitoring, all free at the point of delivery. An additional priority is training of doctors, nurses, and other medical personnel to reduce stigma and discrimination toward people living with HIV.

The members of MENA-Rosa are also advocating for better access to sexual and reproductive health information and services, including HIV prevention and testing for both married and single women. Among other urgent needs are policies, projects, and legislation that specifically address the challenges of women at higher risk of HIV infection, including female sex workers and women who inject drugs.

Greater efforts by government and civil society to raise awareness and reduce the incidence of gender-based violence in the public and private spheres are also required, with an emphasis on projects that educate and engage boys and men. And the members of MENA-Rosa want to see changes in legislation and law enforcement to help women realize the same political, economic and social rights as men.

Shereen El Feki is vice chair of the Global Commission on HIV and the Law.

References

1. UNAIDS, Standing Up, Speaking Out: Women Living With HIV in the Middle East and North Africa (New York: UNAIDS, 2012).
2. UNAIDS, Standing Up, Speaking Out.
3. UNAIDS, Standing Up, Speaking Out
4. UNAIDS, Standing Up, Speaking Out.
5. UNAIDS, Standing Up, Speaking Out
6. UNAIDS, Standing Up, Speaking Out.