“I had been living with AIDS since 2013,” Adham told Al-Ahram Weekly. Before he knew that he was sick with the disease, his health had been deteriorating and he had had a fever. Had he not gone to the Homeyat Hospital in Cairo, a hospital specialising in fever, he would likely have lost his life.
“When I entered the hospital, the doctor diagnosed me with HIV, and the blood test results confirmed that later,” he said.
When the Weekly asked to talk with people in Egypt living with HIV, it promised to do so under condition of anonymity. One of the doctors who treats such patients asked if any of them would accept to talk to the press, which is how the Weekly found Adham.
Adham is not his real name, but it is one he liked, he commented.
“The moment I knew that I was an AIDS patient, I told myself that I was going to die and that this was the end. I remembered immediately how I was infected.” However, Adham regained hope after he started taking medication, and he found that there were others in Egypt living with the virus.
“These patients are known as people living with HIV, and now I am one of them,” he said.
His family was a great support for Adham. “All this started in Ramadan when members of my family insisted on drinking from my cup with me. The message was that ‘you are our son and we love you’ since there is no way this can transmit the infection.”
Some people living with HIV are faced both with the illness itself and psychological illnesses. “We try to help one patient as much as we can as he has many issues with his family. The family’s role is very important in our situation,” Adham said of a fellow patient who had not recognised that he had psychological issues. “So, we helped him through a psychiatrist.”
Ordinary interactions cannot transmit the HIV virus, something that has helped Adham.
“It was then that I started the phase of acceptance. It helped me a lot, and I practised it with other patients who were rejected by their families or had no families. I also met women who had been treated violently,” Adham told the Weekly. With such awareness, he started to get out of himself and help others. “Helping others and playing my role in the community led to inner peace,” he noted.
It was for this reason that Adham and others created the Eagles Team for those living with HIV, offering support for patients and health, financial and social services for marginalised people. According to Adham, social circumstances may lead to behaviour that puts someone at risk of contracting HIV.
Amina, 33, was infected through sexual relations with her husband.
“He was a drug-user for two years, but I only knew that after he was arrested. I was terribly shocked and asked for a divorce. As he wanted to receive treatment for addiction, he went to a psychiatrist who asked for an HIV test and we knew then that he had been infected with HIV. I had a blood test as well as my son. My result was positive, and my son’s test was negative,” Amina told the Weekly.
“That is one reason for the poor reputation of those living with HIV,” Adham confirmed. “People wrongly think it has something to do with drug abuse. But supporting people with HIV and their families leads to better lifestyles,” he said.
According to the World Health Organisation (WHO), “while only a few years ago there was very little reliable information, today most countries have evidence confirming concentrated epidemics in one or more most-at-risk populations.”
“This includes among injecting drug-users in Afghanistan, Egypt, the Islamic Republic of Iran, Libya, Morocco and Pakistan. HIV has been increasingly noted among homosexual men, including in Egypt, Sudan and Tunisia.”
World AIDS Day
Held on 1 December every year, this is an international day dedicated to raising awareness of the AIDS pandemic caused by the spread of HIV infection and mourning those who have died of the disease.
At the event organised to mark World AIDS Day held recently in Egypt, the slogan was “Reduce the Harm, Act Now” announced by WHO representative in Egypt John Jabour. “The Egyptian government took a historic step in 2014 towards offering treatment to all through government funds. Starting in 2017 the Egyptian government has started totally funding treatment for HIV through antiretroviral therapy (ART). The patient receives the treatment as soon as the virus is discovered,” Jabour said.
According to Jabour, the purpose of World AIDS Day is to highlight the importance of increasing support for those infected and raising awareness about the disease. “There is a deep need to limit the stigma and discrimination that people with HIV sometimes face,” Jabour said.
But this is not always easy. “People look at those who are living with HIV as somehow responsible. But there are doctors, nurses, and members of other professions living with HIV. The disease does not stop anyone from participating in a professional life. But they keep it secret, in order not to lose their jobs or to be discriminated against,” Amina told the Weekly.
“Helping people with HIV and supporting their families through the UN children’s agency UNICEF’s initiative Mother and Child is what I am doing now,” Amina said. She works with mothers and pregnant women living with HIV so their children will be safe. “My husband is no longer an addict, and he also works with us in the same initiative as an outreach worker for addicts living with HIV,” she added.
According to UNICEF, “although Egypt is considered a low-HIV-prevalence country, there has been a significant increase in the number of new cases of infection over the past years, and the estimated number of people living with HIV is more than six times higher than it was in 2000.”
HIV directly and indirectly affects children in a number of ways. Children may live at high risk of HIV; they may live with chronically ill parents or adults and be required to work or put their education on hold as they take on household responsibilities; they may experience poverty because of the disease; and they may be subject to stigma and discrimination because of their association with a person living with HIV.
Nour, 42, found out in 2007 that she carried HIV and her daughter was the reason. “My daughter died at the age of a year and three months after she was diagnosed with HIV. I was the reason, as I was infected with the virus when I was at the hospital delivering her. The doctor examined me with other women with the same equipment,” Nour recounts.
At that time, she felt that her life had stopped. “After I lost my daughter, I feared the loss of other members of my family, so I isolated myself from everyone,” she said. This reaction was what she had learned from the media. “False information about how the virus is transferred from one to another destroyed my life until I met a very respectful doctor who explained to me all the information about HIV,” Nour said.
Since 2007, her husband has been her main supporter. She couldn’t tell her mother, but she felt that her father’s family was more educated so they could keep her secret. “Through my husband’s trust and love for me I succeeded in overcoming the shock, and we adopted a girl who is now nine years old,” Nour said, the happiness appearing in her voice.
Through the association Sehety min Beeaty (My Health from My Environment), Nour is now helping other women receive their right to healthcare. “According to the constitution and the law, we have the right to investigate private clinics, delivery clinics, or anywhere else where a woman may face negligence putting her at risk of HIV,” Nour said.
But more awareness is needed. “Unfortunately, the media increases the stigma and discrimination against us. Even those who appear on television channels say that patients behave badly, and this increases the stigma and discrimination,” Nour sadly told the Weekly.
According to UNICEF, anyone who feels they may be at risk of HIV is recommended to consult a doctor and get tested, along with their spouse, children.
Danger signs may include the presence of sexually transmitted infections, the use of unsterile or shared needles, the danger of a contaminated blood transfusion, sexual assault or rape, and being born to a mother with HIV.
Faten Shokr, responsible for preventive and counselling programmes at the National AIDS Programme (NAP) the Ministry of Health, agreed with Nour regarding the role the media can play in providing more information and support for those living with HIV. “Although there is more awareness now than before, we need more campaigns on the television channels,” she said.
Preventing the spread of HIV means making medication available and raising awareness in youth centres, schools, and family planning centres, she said.
Shokr described efforts made by the Ministry of Health through the National AIDS Programme. “In 1986, when the first AIDS case was known in Egypt, the NAP was launched to coordinate and supervise all the services offered by the ministry and civil society organisations for those infected and their families. All the services are free,” she said.
Shokr added that the programme aims to keep the spread of the virus at the lowest possible rate, and it offers support and care for patients and their families. NAP services include prevention, check-ups, treatment and support, coordination and management, and preventing stigma and discrimination.
According to the Ministry of Health, there are 13,000 people living with HIV in Egypt, of whom 8,700 are on medication.
“AIDS is the worst phase of the disease, but there are people with HIV who do not know they carry the virus or who do not take the treatment,” Shokr said. “However, today they are limited in comparison with those who receive treatment.”
Even though Egypt is a low-risk prevalence country for HIV, it has markedly low levels of accurate knowledge about the virus, especially among the youth population. 2015 figures showed that only four per cent of young women and seven per cent of young men between the ages of 15 to 24 had correct knowledge about HIV. Moreover, knowledge about the prevention of HIV was low across most socioeconomic indicators, including educational level, region, age group, and wealth quintiles.
Only 15 per cent of women aged between 15 and 49 knew that HIV can be transmitted from mother to child by breastfeeding and that the risk of transmission could be reduced by the mother taking special drugs during pregnancy despite the fact that the Ministry of Health provides ART to all detected cases of pregnant women with HIV.
The number of women and men who knew a place where HIV testing was available was even lower than those who were aware of or had comprehensive knowledge about HIV. Only two out of every 30 women (seven per cent) between 15 and 49 years of age in Egypt knew a place where HIV testing was available in 2015.
The higher the education level, the more people were aware, or had better knowledge levels, about the availability of HIV testing, with 14 per cent of women who had completed secondary education or higher being aware of a place for testing versus almost no knowledge (two per cent) among those with no education.
According to UNICEF, the most common way that children become infected with HIV is through mother-to-child transmission (MTCT), which is the spread of HIV from an infected woman to her child during pregnancy, delivery or breastfeeding. Accordingly, the major objectives of the HIV response for children is the prevention of MTCT.
While comprehensive knowledge about HIV is low among both genders and across all age groups, women demonstrate lower levels of knowledge than men in Egypt, which puts women at higher risk of contracting HIV.
Furthermore, a lack of knowledge on the availability of HIV testing, particularly during pregnancy, results in a low coverage rate for ART drug treatment for infected pregnant women, which increases the risk of MTCT.
In Egypt, the coverage of pregnant women who receive ART drugs for the prevention of mother-to-child transmission has fluctuated over recent years, standing at nine per cent in 2017 (UNAIDS, AIDS database). This low coverage represents a serious risk to children, as over 90 per cent of new HIV infections among infants and young children occur through MTCT.
Despite the fact that the ministry provides treatment to all detected cases for pregnant women living with HIV, the problem remains with pregnant women not knowing that they are living with HIV during their pregnancy or breastfeeding because they do not go for testing.
Without any intervention, the risk of transmission of the infection from the mother to the baby is between 20 and 45 per cent. With an evidence-based set of comprehensive interventions, this transmission rate can be reduced to less than two per cent.
Strengthening the capacity of NAP to improve mother and children’s retention in care and adherence to life-long HIV treatment is now a priority, as is advocating for the right of people living with HIV to receive quality healthcare services. Stopping the stigma and discrimination still sometimes faced by those living with HIV in healthcare facilities is a main target for the NPA.
For Adham, through helping colleagues and friends living with HIV, he also helps himself. “The Eagles Team is the way we can achieve our targets,” he said.
Will he ever be able to marry? “I might, but I would need to tell my fiancée that I am living with HIV. It is her right to know and decide whether she wants to live with me or not,” he concluded.
*A version of this article appears in print in the 12 December, 2019 edition of Al-Ahram Weekly.