Stories from women living with HIV in the Middle East and North Africa

When Sabera tested positive for HIV in Libya, she was deported to her home country Sudan. After suffering a string of rights violations, her case was documented by MENA Rosa – an organisation led by women living with HIV.

Child's ankleSome mothers have had their children taken away because they are living with HIV  © Jenny Matthews for the International HIV/AIDS Alliance

When Sabera was deported, her husband was imprisoned. Sabera’s child had also tested positive for HIV in Libya and been refused proper treatment. After returning home, her child died of an AIDS-related illness. A short while later, Sabera herself was denied medical care after being hit by a car.

This is just one of many shocking stories from women being supported by MENA Rosa, which was set up in 2010 and now operates across 13 countries in the Middle East and North Africa (MENA) region.

Supporting women living with HIV

MENA Rosa supports women living with and affected by HIV including women of diverse ages, sexualities and gender identities, sex workers, migrant women, and women who use drugs. Its presence signals a historic shift in the region’s HIV response. With 58% of new HIV infections among young people in MENA occurring among adolescent girls and young women in 2015 (UNAIDS), the need could not be greater.

Rita Wahab from Lebanon, who helped set up MENA Rosa and is also the regional coordinator, says: “When you are helping women and children you are helping the whole community. But we still have certain traditions and religious taboos. Already women are discriminated against for being a woman in a patriarchal society. In that environment, when you are a woman with HIV or from a key population or a partner of someone from a key population, this makes double, if not triple discrimination.”  

MENA Rosa operates through a peer-led model, identifying women involved in its network to become peer educators and outreach workers who help women in similar situations. In 2017, the International HIV/AIDS Alliance supported MENA Rosa to train focal points in all countries covered by the organisation (including Sudan, Morocco, Tunisia and Yemen) on REAct, (Rights, Evidence, Action), a system for monitoring and responding to violations that impact on people’s sexual and reproductive health and rights and their ability to access HIV services.

Evidence on human rights violations

The focal points have now gathered a wide range of evidence on the barriers women living with HIV experience when trying to access HIV and health services, as well as a range of rights violations that occur in daily life. Each woman whose case has been documented has been offered help and support specific to their needs.

In health settings, many women have reported being refused treatment due to their status. Sabera says: “As soon as I told [the doctor I was HIV positive], she moved away and so did the entire medical team. Within half an hour, I was moved to another hospital carrying the papers that proved I was someone living with HIV – and that made the answer from every hospital ‘no beds available’.”
In the end, Sabera had to lie about her status to get the medical treatment she needed. “I was physically in pain from fractures in my shoulder and thigh, and psychologically hurt by the rejection, stigma and discrimination I was facing.

“Is it logical to be forced to lie in order to have access to the right health services?” she asks.

Children taken from mothers living with HIV

Incidents of rights violations beyond health settings are also common.

“We have situations where women, because of their HIV status, are losing their inheritance and their children are taken away from them,” says Rita. “They will be told they can keep their HIV positive children but they cannot keep those who are HIV negative. But going to the court to contest this takes time and money.”

Rita says stories such as Nabeeha’s from Yemen are common. Nabeeha discovered she was living with HIV while in hospital giving birth to her daughter. Soon after, her marriage fell apart.

“[My husband] went on spreading the news of my status in the neighbourhood,” she says. “As if that was not insulting enough, he went to my workplace and informed the management that I was HIV positive. I was dismissed.”

Gender-based violence

One of the key issues gathered by the MENA Rosa focal points relates to experiences of gender-based violence (GBV). Following this work, the organisation is now collaborating with the Alliance and UNAIDS to implement LEARN-MENA, a USAID-supported programme that explores and documents the links between GBV and HIV for a diverse range of women in the region, as a way to identify and drive responses and influence decision makers.

The role of MENA Rosa’s focal points are key to this, as they will be conducting field research with women and communities from Morocco, Algeria, Egypt and Lebanon for the project – women who may have previously been uncomfortable talking to authorities about such experiences.
“When it comes to the factors that contribute to a woman having HIV, gender-based violence is the top of the list,” says Rita. “When it comes to this issue we have to educate women to understand their rights but we also have to educate men to respect them, otherwise it doesn’t work.”

Rejected for living with HIV

Aliya from Morocco has also had her case documented by MENA Rosa. She was diagnosed with HIV at the same time as her young child and was rejected by her husband as a result.

“When I tried returning home, I was shocked by my husband’s refusal to let me in; that in addition to humiliating me in front of the family and neighbours,” she says. “His family threw my belongings in the street. I took refuge with my sister and a few days later I received the divorce papers in which my husband describes himself as victimised.”

Rita says she is hopeful the documentation work will be used to educate policy makers on the reality many women living with HIV in MENA are facing, in order to effect change. To this end, a number of REAct cases have been collected together for Silent Stories, a publication that is being shared with decision makers throughout the region and will be showcased by the Alliance during AIDS 2018. It is also being used in workshops and sessions in MENA to help women learn about their rights.

“We need, simply, to live, to have rights, to have access to good medication, and to express our needs,” says Rita. “We need to have others accept us the way we are; we are human beings, not the virus. This is why our role is important here: to change the situation.”

Read Silent Stories