The human immunodeficiency virus (HIV), which causes AIDS, is still one of the most frightening diseases because it damages the immune system and therefore leaves the body open to a variety of other infections. There is still no available cure.

However, while there is still no cure for HIV, it is now possible to live with the virus as a result of improved anti-retroviral treatments. Even so, and despite the fact that the virus is not widespread in Egypt, being positive for HIV can still be accompanied by social stigma due to its association with socially unacceptable sexual behaviour.

Of course, many of those infected with HIV did not acquire the virus as a result of sexual activity but did so through infected blood or in other ways.

World AIDS Day falls on 1 December every year, and it is an opportunity to review infection rates for HIV in Egypt. According to figures from the Ministry of Health and the National AIDS Programme, in 2022 the prevalence rate was still very low compared to other countries, with less than one per cent of the population estimated to be infected, or three out of every 10,000 people.

Those most vulnerable to infection are injecting drug users and male homosexuals. The highest infection rates are seen among people aged from 15 to 24.

Ministry of Health figures suggest that there are 22,000 people living with HIV in Egypt, but other estimates indicate that the number may actually exceed 100,000. There has been a significant decrease in infections among children less than five years old due to greater awareness-raising among infected women to prevent the transmission of the infection from mother to child.

The stigma associated with HIV is similar to that associated with some other groups, meaning that individuals affected by the virus may still encounter prejudice from others, preventing them from living a normal life. This is so even though the mechanisms that lead to HIV infection and to its progression to AIDS are widely known.

According to Abdel-Hadi Misbah, a specialist in immune-system diseases, the HIV virus infects and destroys important cells in the human immune system, specifically T lymphocytes, or CD4 cells, a type of white blood cell that plays an important role in human immunity. HIV is transmitted through blood and other bodily fluids, meaning that infected blood transfusions or contaminated needles can lead to infection.

The virus is also found in certain bodily fluids, including men’s semen and women’s vaginal secretions, and it can be transmitted through such fluids from an infected person to a healthy one, whether the contact is vaginal, anal, or oral. The virus can also be present in the fluid surrounding the foetus, called the amniotic fluid, and in breast milk, and the virus can be transmitted from mother to child if the mother does not receive appropriate treatment during pregnancy.

Giving birth by caesarean section can also raise the risk of infecting the unborn child among mothers infected with HIV, as can breastfeeding.

Today, it is possible both to live with HIV as a result of modern treatments and to deal normally with someone infected with the virus. Misbah said that though HIV is also present in other bodily fluids, including saliva, sweat, tears and urine, it is not transmitted through them, which means there is no threat of infection from an infected person. A person with HIV can be a companion at work or study, especially since the virus is not transmitted through normal daily behaviour such as hugging, kissing, or shaking hands, as well as sneezing or coughing.

There is no risk of infection from using the same toilets, swimming pool, towels, or tableware, so there is no need to be afraid of dealing with people living with HIV.

SABAH AND SHERIF: I only met Sabah, who was HIV positive, once, since she died a few days after our meeting.

I continued talking to her husband and her son until the death of her husband about six months later. I heard nothing of the family after that, and all I knew was that the son had dropped out of school and was working in a fish restaurant in the coastal city where the family lived.

When I met Sabah, I noticed that her mouth had forgotten how to smile, there were dark circles under her eyes, and her face was pale and exhausted. She had lost weight and seemed to be just skin and bones.

Days before our meeting, Sabah had reached her 40th birthday, but she said she felt as if her days were coming to an end. She could hardly hear her daughter’s voice, let alone hope to see her in her wedding dress. Between the pains of her restless stomach and constant heart trouble, Sabah knew little but pain.

“What hurts me most is seeing my husband and the father of my children also losing his vitality day after day. Worrying about my children is killing me more than this disease, but there is nothing to be done,” Sabah said.

Sabah had married Sherif, her childhood sweetheart, many years before. He was a caretaker in a state school during the day and a waiter in a coffee shop in the evening. Sabah admired the way he balanced his two jobs and their marriage.

After having her first daughter, and a second son who was a heavy burden despite his young age, she became pregnant for a third time. However, as she suffered from anemia and had severe bleeding when she had a miscarriage, she was taken to hospital to receive a blood transfusion to save her life.

Sabah decided to not have any more children, but she was then surprised with an unplanned pregnancy. Her health was improving, and she decided to be careful so she could deliver her baby safely. Yet, things did not go as planned, as her baby fell sick right after the delivery and all attempts to save his life failed. The symptoms raised the curiosity of one of the doctors, who ran some tests and discovered that Sabah had HIV.

Sabah suspected that the blood she had received during her miscarriage was contaminated and that this was also the reason behind her husband’s infection. She filed an official complaint against the hospital and appointed a lawyer to look into the case. However, it was later closed owing to a lack of evidence.

Sherif recounted his part-time job in a government school, a post he had decided to take as it gave him health insurance and a pension after his retirement. Despite making good money from his work in the coffee shop, he could not achieve what he had hoped and worked for, however, giving stigma as the reason.

AWARENESS IS KEY: According to Hassan Al-Khouli, a professor of Sociology at Ain Shams University in Cairo, HIV is a disease often connected to sexual behaviour between men or addiction, things rejected by both society and religion, which is why it is often still seen negatively by society.

As a result, many patients may feel ashamed to reveal their infection, and people around them may find it difficult to connect with them. Despite the methods of transmission being widely known, people may still stigmatise those who are infected.

Al-Khouli said that being infected with HIV does not necessarily mean a sexual route for the infection, as those infected may have received blood contaminated with the virus during a blood transfusion or acquired the virus at birth. Those who carry the virus cannot be blamed, he said, as it is not for us to hold each other accountable.

He said there was a need to change negative ideas about those who are HIV positive by raising society’s awareness. This means explaining the virus, its ways of transmission, and the rights of those infected by it, as they are often in need of being treated compassionately. Being infected with the virus is burden enough, he said.

Organisations such as the Ministry of Health, the media, civil society organisations, and social and cultural clubs should all contribute to forming a public opinion that is more tolerant towards those infected with the virus, Al-Khouli said. Raising awareness could also help in reducing the numbers of infections, as solving problems happens through discussion and not through ignoring them, he said.

Youth groups in particular should be targeted in such campaigns.

As a way of discussing social stigma and how it can be a hindrance to those infected with HIV in Egypt, the young director Louay Galal has directed a documentary called Anonymous Letter inspired by stories from a book called Death by Stigma that draws attention to the burdens of individuals infected with HIV and that stop them from leading a normal life.

The film deals with three individuals, two men and a woman, living with HIV. It was filmed in a way that conceals the identities of these individuals, and voice-changing techniques were used to protect their privacy. Situations shown in the film explore the suffering caused by the negative attitudes of healthcare providers or religious figures, with these prompting the individuals concerned to suffer from psychological pressures that may be more severe than the disease itself.

The film won the Best Short Film Award at the first Hurghada Youth Film Festival this year, where the jury complemented the director on his handling of the social stigma associated with this disease in Egypt and the Middle East in a sophisticated way that is neither too direct nor too vulgar.

Galal has also received the International Labour Organisation Award at the Shasha Mobile Cinema Festival in Upper Egypt for his short film A Letter to My Father, which tells the story of a young woman falling victim to gender-based violence as a result of HIV.

The film tells the story of Magda, a woman living with HIV, who is a nurse in the radiology unit in a government hospital in the Delta. When her manager finds out about her illness, he asks her to submit an official document from the Ministry of Health stating that the virus was transmitted to her from her husband.  

Magda fears that people will hurt her and her children if the news of their infection comes out. “People are merciless. They will throw stones at those they think are carrying the virus, as well as at their families,” she says.

She says in the film that she learned the truth about her husband’s infection about an hour before his death. Some years later, and knowing that she was living with HIV, she decides to tell her children. Their reaction warms her heart.

“They used the Internet to learn more about the virus, how it is transmitted, and ways to live with it,” she said. “All of this greatly helped me.”  

She then turns to her dead husband’s siblings, who blame her manager for telling her co-workers about her illness. They go to the meet the manager in the film, who then withdraws his original request.

* A version of this article appears in print in the 7 December, 2023 edition of Al-Ahram Weekly