CAIRO, Jan 27 (Aswat Masriya) - Nearly five years ago, when Safaa* was 26 and a mother of two, she discovered that she had HIV (human immunodeficiency virus) - a disease which destroys the immune system of its host. To her, this was worse than a death sentence - it would force her to keep her medical history secret from even her closest relatives for the rest of her life.
Fearing that her relatives would not accept the news of her infection, she managed to keep her secret for about a year and a half, until her third pregnancy gave her away. During that pregnancy Safaa was told by a nurse, “you should go die”, for conceiving a child while living with the virus. But this was just one of the many ordeals that Safaa has faced since she got the disease.
Safaa’s mother, father and brothers tried to be supportive but did little to hide their fear of infection. One of her brothers got into an argument with her over washing her clothes with her children's, fearing they would contract the virus as a result, which is medically impossible.
HIV can be transmitted through unprotected sexual intercourse, transfusion of contaminated blood, sharing syringes and in some cases from mother to infant during childbirth or through breastfeeding, according to the World Health Organisation.
Nasser Hashem, the executive director of Roaya association which provides support for people living with HIV said, “people here base their judgments on preconceived ideas about the virus’s modes of transmission.”
Safaa, who believes she caught the virus from her husband, tried to explain to her brother that she would “definitely” never put the life of her virus-free children at risk but it was in vain.
Problems also escalated with her mother-in-law whose house she was living in. Eventually, Safaa and her children had to move out but Safaa is among many who had to leave their homes as they live with the stigma of having HIV in Egypt.
A survey conducted by the Egyptian Society for Population Studies and Reproductive Health (ESPSRH), an NGO that works with HIV patients, in 2013 shows that 21 percent of people living with HIV said they were forced to change their address or were unable to rent a place because of their HIV status. The survey included 529 people, of whom 160 were women.
Over 53 percent of women who revealed their HIV status were denied access to health services, according to the survey. While Safaa has not been denied access to health care, she nonetheless has seen enough stigma from doctors, especially during her third pregnancy that would eventually push her to “never” disclose her condition to any doctor ever again.
Safaa recalled many painful incidents during her third pregnancy. On the due date, she arrived at the hospital at 7am to have a C-section operation but she did not have it for almost 12 hours, when a doctor finally agreed to deliver her child.
In the operation room, Safaa requested anesthesia through her arms because she fears the syringe but one of the doctors responded by hitting her on the back telling her “if you do not like this, go have your operation outside of this hospital”.
Disregarding the privacy of their patient, nurses in the hospital regularly referred to her as “Safaa who has AIDS”.
“They called me that in front of the whole hospital,” she says.
Safaa decided that she'd had enough of this treatment and did not tell the doctors about the HIV during her fourth pregnancy. It scared Safaa to do so, but the fear that having the virus would put her at the risk of being completely denied access to health care, was far bigger
She also decided to never tell her children about her condition. Three of Safaa’s children are virus-free but the fourth, who was born a few months ago, has yet to be tested.
“I do not want to bring them shame,” she said. “I do not want to ruin their future and their prospects of getting married."
HIV is inevitably coupled with stigma and discrimination in Egypt. The virus is notoriously linked with 'immoral’ sexual behaviour such as infidelity, homosexuality and sex work, all of which are largely rejected and considered taboos in Egypt.
If a woman contracts the virus when she is married, her fidelity is often questioned.
Hashem said many people think that “a woman living with the virus is a woman who engaged in an illicit relationship.” This is the “default rule” which has become deeply entrenched in people’s mind regardless of their social status or education, he added.
Psychologist Dr. Nehad Senan says that every single case of HIV that she has encountered in Egypt has been stigmatised and discriminated against, but the stigma women face is "higher and more dire” than that faced by men.
Senan, who has been providing biweekly support sessions for people living with HIV since 2008, said some health care providers, being part of society themselves, judge women living with the virus despite the training and education they have received.
“Some of them are scared that if it became known that they treat people carrying HIV, other people would avoid showing up to their clinics,” she said.
But people with HIV are not only shamed by family members and health care providers. A total of 80 percent of working women questioned in the ESPSRH survey reported losing their jobs or source of income because they live with HIV.
This is why Lamia*, a 39 year old mother of two girls who works in a nursery school, opted to hide her infection from her colleagues and supervisors at work.
“They would fire me immediately and I still need the job,” she said.
Lamia was widowed in 2014 after a 12-year marriage with an injecting drug user. Six years into the marriage, Lamia split from her husband for nearly a year and a half. At the end of the split, Lamia's late husband visited her to tell her that she should be tested for the virus.
Lamia panicked and informed her brothers, who she was living with at the time, a decision she later came to regret.
Like Safaa, Lamia had her share of ill-treatment inside hospitals. When she was giving birth to her second child, nurses and doctors did not even want to touch her, even though they had taken precautionary measures that seemed “extreme” to her.
Lamia said one doctor yelled at her for not answering his questions about how she caught the virus. “He told me: You are covering up for your husband, we are fed up with the likes of you”.
“After being treated this way, I no longer tell doctors that I am living with the virus”, Lamia said. She also decided never to go to the hospital where she gave birth, fearing that she might be identified as "the woman with HIV."
But being pushed to be silent on having HIV might hinder prevention and treatment.
During the support sessions for people living with HIV, Senan said she usually explains the importance of informing the healthcare providers. While some patients take her advice, others do not, mostly out of fear of discrimination.
Although HIV prevalence in Egypt has increased dramatically, it still remains quite low. The UNAIDS estimates the number of people above 15 living with the virus to be roughly 11,000 with women making up less than half of them, around 3,300 cases.
But the UNICEF said that since 1990 “there has been a sharp increase of 268 percent of detected HIV cases” in Egypt.
The Country Manager of UNAIDS, Ahmed Khamis, said that up until 2012, the annual rate of new confirmed cases ranged between 300-400 but in 2015 the number of newly confirmed cases jumped to 1,200.
“In a country like Egypt, where there is high stigma, people are not really encouraged to go test for HIV,” he said. He added that women especially face “many obstacles” when trying to learn about HIV status, since they are usually looked down upon. Khamis believes that while everyone living with the virus may face stigma, women living with HIV face a “double burden”.
UNICEF says 71 percent of HIV transmissions in Egypt occur sexually, “with heterosexual transmission representing almost half of all detected.” Similarly, the results of the ESPSRH survey revealed that “the majority of infections among women were due to heterosexual relationships,” as more than 75 percent of the women interviewed stated that the reason for undergoing an HIV test was the infection or death of a husband, a partner or a family member.
This is how Nawal*, 34, learned about her infection with the virus, nearly a decade after giving birth to her first and only child.
She spent the first nine years since the child’s birth unaware of the reason her baby’s health was deteriorating, until one day the doctor who was treating her child suddenly refused to see them anymore.
Later, Nawal learned that she and her child had been living with the virus for years. She says she contracted the virus from her husband, who divorced her in 2008.
Her husband died from the virus in 2010 but “no one cared to tell me about the reason of his death until I found out in 2012,” she said.
Nawal, who works as a nursing assistant, was lucky enough to have found people who are supporting her through the ordeal, including her family and the doctors and nurses working with her.
But even though she is luckier than many other, she still struggles with how to break the news to her child, now an adolescent. Out of fear that he might be expelled, she managed to keep his infection from his school for years.
“But we [the society] are to blame, we created a bad reputation of this virus,” she says.
Disclaimer: Names with asterisk (*) have been changed upon the request of the sources to protect their identities.