Feature Writer Valentina Primo uncovers the stigmas that surround HIV, revealing that the misconceptions about the virus are actually much more dangerous than the virus itself.
Hazem* had a panic attack when he found out the test results. It was the end of the Holy month of Ramadan in 2012, and he had travelled to Cairo to take an HIV test, as he had been doing for the past four years. His friends and family in Fayoum could never know the result. He was alone.
“In Egypt, we know it exists, but we still do not take precautions. We always think foreigners are the ones who have HIV,” he says. Having lived for three years with the virus, Hazem leads a normal life as he undergoes treatment every day. But as society has veiled the subject with a stigma related to homosexuality and drug use, he refrains from sharing his condition with anyone. And that, he says, makes it harder to prevent others from contracting it, too.
At the roots of societal stigma stand several misconceptions associated with the disease, which hinder public awareness and as a consequence deprive patients of their rights. “The most common myth is that HIV is related to immoral behaviors,” says Mohamed*, a health consultant assisting patients in an organization that did not want to be mentioned in this article. “Another common mistake is to think that people with HIV are destined to die. There is a huge lack of knowledge on how to deal with the disease, and this leads to people fearing dealing with patients,” he says.
According to UN AIDS, there are 8,800 Egyptians living with HIV as of 2014. In 71% of cases, transmission occurs sexually but, contrary to people’s belief, heterosexual transmission represents almost half of all detected cases. “In Egypt, the most at risk populations are drug users, sexual workers, prisoners, street children, and men who have sex with men,” explains Mohamed.
Transmission through injecting drug use, blood and mother-to-child transmission are all below 5%, according to UNICEF Egypt. However, the organisation points out that in 9% of detected cases, transmission occurred through renal dialysis. “Any person can contract HIV and live without knowing for a long time,” Mohamed says. “What usually happens is that they go to have a medical checkup when they feel common symptoms, such as fever, and discover through blood testing that they contracted the virus.”
The burden of carrying a stigma
After Hazem discovered he had contracted the virus, he only told his close friend, who was suffering from the same disease. “My sister ended up finding out, but I would never tell my mother. She would kick me out of the house because people think it comes through immoral acts,” he explains.
There is only one place to get official HIV testing in Egypt: the Abasseya Fever Hospital, which also provides free medical treatment, called ARVs (Anti Retro Virus), in cases where there is positive testing. The treatment involves oral pills to be taken every day at the same time. Although there is no cure for the virus, the treatment lowers the virus load and boosts immunity.
However, once Hazem told the doctor in that hospital that he was an HIV patient, he was refused adequate treatment. “They are very aggressive with us there,” he explains. “Because of all the associations to sex workers and same sex relations, people undergo really stressful situations in medical facilities, sometimes even being rejected,” adds Mohamed.
“Most countries in the MENA region criminalise same sex relations, making it virtually impossible for this key population to seek or receive the necessary HIV prevention, treatment and care services,” says Senior Strategic Information Advisor at UNAIDS Ali Feizzadeh.
“Since they discovered the epidemic in 1980, the disease was mistakenly linked to the homosexual population,” explains Mohamed. The connection results in the stigmatization of patients, who find themselves victim not only to physical problems, but also psychological strain and often do not reveal their status even with their families and partners. “The problem with not revealing your status is that you can be transmitting the disease to someone else,” Mohamed says.
“Egypt needs national awareness, both in terms of media and the general population, but also among physicians. If the stigma was removed, it would be much easier to avoid spreading the disease,” he adds, pointing out that there are often cases where patients hide their status from their own partners even after they discover that they’ve spread it. The organisation where he works offers regular psychological support during the process of getting treatment, through support groups where they can share their stories and talk about the challenges they face.
Myths and misinformation
“What people don’t know is that we can live a long life having HIV,” says Hazem, who used to work as a sales representative and is now looking for better salary prospects in other companies. “People don’t know that you can lead a healthy life and you can actually have children who will be HIV negative, if the right precautions and treatment are taken,” he says. According to UNICEF Egypt, 21.1% of HIV‐positive pregnant women receive antiretroviral medicines to reduce the risk of mother to child transmission.
According to the UN, Egypt belongs to one of only two regions in the world with rising HIV epidemics. But, according to the health specialist, the data reflects an increase in cases registered, but it doesn’t necessarily imply that the incidence is increasing. “The problem is that we lack credible data because of the stigma related to it,” he says.
“We know for certain that, among the most at risk populations the prevalence is 0,5%. But there is also a contradiction between the numbers provided by the Ministry of Health and the work of international NGOs,” he adds.
Another common misconception links HIV to AIDS, which only refers to the terminal state of the infection. “AIDS means that your body changes rapidly, and the risk to have opportunistic infections becomes higher, and you get fatigued easily,” says Mohamed. “Over time, if you don’t take treatment, immunity becomes very weak so you easily contract other infections, such as tuberculosis. Any simple infection can be 10 times more severe if you have HIV”.
However, the physician stresses that taking the right medications and preventing the spread of the disease –which main occurs through sexual intercourse, the sharing of syringes, blood transfusion, and from mother to children—HIV patients can live a considerably healthy lifestyle without developing AIDS.
Photo credit: Iwan Gabovitch, Creative Commons Licence.