Breaking the Wall of Silence: Getting Face to Face with AIDS

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For some people, being ‘Positive’ is the beginning of a life full of desolation. As government, society and media close the doors of mercy in the face of people living with HIV. Taking slow and ineffective measures towards AIDS awareness Egypt turned into one of the fastest growing HIV epidemics. The call for taking effective stands is highly required and the awareness towards AIDS is missing big time. We’re not just talking about general awareness towards HIV we’re talking about finding the right way to communicate with people living with HIV without being in the dark.

AIDS stands for Acquired Immunodeficiency Syndrome and describes the collection of symptoms and infections associated with acquired deficiency of the immune system. Infection with HIV has been established as the underlying cause of AIDS which is the final stage of HIV infection. HIV destroys the body’s ability to fight off infections and disease, which can ultimately lead to death. It is transmitted through exchange of body fluids such as blood or semen. Meaning through unprotected sexual intercourse or using contaminated injecting equipment like syringes or a cannula, for instance.

The reported number of People Living with HIV by the Ministry of Health till the end of 2010 are a total of 4,313 HIV cumulative cases, of which 3,328 are Egyptians. Currently, 2,103 Egyptians are known to be living with HIV according to the Ministry of health reports. The estimated number of PLHIV by UNAIDS and WHO are expected to be around 11,000 individuals. The difference between actual and estimated is based on the fact that not every person who has been infected with HIV is aware of their own status. Despite this small number which makes HIV low prevalence in the general population, studies have shown that there are signs of concentrated HIV prevalence (above 5%) among certain populations at risk in society which places those groups and their sexual partners at higher risk.

Shocking but true, most people who live with HIV don’t know that they have it, and when they do, the right step to take is overshadowed, “The first step is to determine your HIV status. The only way to do so is through taking the HIV antibody test which is a special blood test that has to be accompanied by counseling before and after. Those services are available at multiple sites in Egypt called the Voluntary counseling and testing sites. If one is determined to be HIV positive through the confirmatory tests, then the counselor will help him/her to know what is needed to continue living positively with HIV through routine monitoring of physical condition, learning about antiretroviral medications and when they would be needed, by learning about support groups for PLHIV and supporting the individual to learn how to disclose HIV status to family members where needed”, Wessam El Beih, UNAIDS Country Officer- Egypt explains.

We spoke with Ahmed Mahdy*, a 31 year old who has been living with HIV for three years.“I first discovered I have AIDS when I went to do some viruses tests for the Military Service. I didn’t know that I’ll be tested with HIV among other virus tests like Virus C. When I was found positive, I thought that I’m the only Egyptian living with HIV and I always had this idea that AIDS comes from sexual relationships with foreigners. I spent the first 6 months in shock and I excluded myself from the world outside”, Mahdy tells. Even among those aware of the disease, there is this theory that says that HIV is coming to the region from the outside “It’s not something that ‘came’ to us from Africa anymore. People must their denial and identify that we have unsafe sexual practices and drugs to be able to say we have AIDS in Egypt”, Wessam adds.

The Middle East and North Africa region is the fastest growing epidemic in the world. Other regions are stabilizing or declining in HIV spread. Sudan and Djibouti are the hardest affected countries in the region. But all other countries are showing signs of concentrated epidemics with rising trends of HIV spread. Women in Egypt are most likely to get AIDS from their husbands who had sexual relationships with other partners. “There are ways to have sex with partners who have AIDS through protected sex. In most of the cases that we’ve seen, the women stayed in the relationship”, Wessam points out.

HIV is able to attach itself to the CD4 molecule in a person’s body, allowing the virus to enter and infect these cells. Even while a person with HIV feels well and has no symptoms, billions of CD4 cells are infected by HIV and are destroyed each day, and billions more CD4 cells are produced to replace them. It is useful to have the CD4 count measured regularly either to monitor the immune system or to help a person living with HIV decide whether and when to start to take HIV treatment and treatments to prevent infections as well as monitoring the effectiveness of HIV treatment they’re taking. “Less than 250 CD4 could normally start their treatment, mine was 170 CD4 when I first discovered so it was ok to get medications”, Mahdy explains.

Stigma and discrimination has been a part of the daily lives of people living with HIV. They get attacked, they get fired, parents throw them out of their homes and other sad consequences. “Some headlines used to say: The arrest of an AIDS patient as if he’s a criminal. The context people use is totally wrong and unacceptable. Lots of people live with HIV for years without telling anyone. It’s so much pressure, people must speak out to find a solution and parents must be supportive. A person living with HIV can live a normal productive life and thus needs to be supported psychologically by family and friends. They need to continue to live productively and positively. This helps the immune system and helps the general condition of the person affected”, Wessam adds, “even saying ‘People infected with AIDS’ is politically incorrect. We must understand that it’s not an infection like getting a cold or a certain virus it’s a chronic disease and we should say ‘people living with HIV”.

“I started by opening up to my mum, she was the only support I had. She loves me and she even cared more about me than before. My case is very rare compared to other people living with HIV in Egypt. I saw and heard terrible examples. In the support groups, I met with people whose families threw them out. There was this guy whose parents used to put a plastic bag on the door’s handle so as not to get the virus! Another one wasn’t allowed to share utensils with his family as if he was a dog. Of course no one could get the virus through such ways. I had a friend who couldn’t handle such pressure and committed suicide. I wanted to have a small surgery and when I told the doctor that I have AIDS, he refused and told me that it will be dangerous for me to take anesthetic but of course that turned out to be a lie”, Mahdy tells us.

Egyptian People Living with HIV can find support groups and NGOs that provide a helping hand. People who go there could remain anonymous if they want and could find all the support they need. “I had some side effects from the medications so I went to a dermatologist and when he checked out my skin, he asked me if I belonged to any support group. I didn’t know that there were support groups in Egypt. I went to Friends for Life NGO which is run by people living with HIV where I saw different men, women and children. Married and single. I connected with them and made friends. It changed my life completely and I learned the path to a Positive Living. I also learned how to deal with side effects, the right times to go to the hospital, the best diets follow and so on. It made me learn that it’s not the end of the world”, he tells.

In our controversial society, sex education has been a debated topic for the past decade. Until this day and age, sex is still considered a taboo that can’t be discussed in class rooms. “Parents must educate their children about safe sex. Lots of parents think that talking with their children about safe sex encourages them to practice sex, but that has been proven wrong. Family talk is very important and really makes a difference”, Wessam says. The media should be an effective tool in shedding the light on such problems. Unfortunately, very little is said and done towards this topic, “Media should correct the mistakes it did several years ago when it produced movies like ‘El Hob Fi Taba’ and ‘Shaweesh Nos El Leil’. There was this AIDS campaign that said ‘whoever Fears God, God creates a way out for him’. AIDS doesn’t happen to people who don’t fear God that’s the misconception that we always had.  Media today has more tools to create awareness than before and this awareness should take place in order to highlight the different sides of this issue”, Mahdy points out.

The bold and courageous film ‘Asmaa’ starring Hend Sabry and directed by Amr Salama (Best Director for Asmaa by ADFF) is coming soon in Egyptian theatres. It’s is considered the first film to talk about the life of people living with HIV. “Amr Salama worked with us for six years on Asmaa. It’s a real life story of someone I know. Her problem was that she came out and said honestly to physicians that she has AIDS because she wanted to have a gallbladder operation and that’s how her problem begins. People like her exist in our society and face problems every day”, Wessam emphasizes. When our team went to ADFF to watch ‘Asmaa’ we couldn’t guess that one of the audience could be a person living with HIV watching a life similar to his on screen, and when we asked Mahdy if he has heard about the movie, we were surprised to know that he actually attended the premiere. “I was stunned by the way Amr Salama brought the life of a person living with HIV to the screen. He successfully portrayed their pain, happiness, sadness and the stigma they face. I couldn’t believe the details and descriptions of everything the film showed, it was as if the writer really lived among people living with HIV on daily basis”, Mahdy continues.

Civil Society Organizations supported by the UN and Global Fund to raise awareness to HIV for Communities in danger like street children, “Street children are a major issue, but you can’t give everyone of them a condom. They’re having unsafe sex it’s a fact, they’re getting raped, they’re taking drugs, and we can’t deny that anymore”, Wessam states.

Like any other issue, Arab uprising had an effect on AIDS. People became more concerned with the political scene and we have become short on facilities and medications due to the current global financial state. Currently, antiretroviral drugs slow down replication of the virus and can greatly enhance quality of life, but unfortunately, they don’t eliminate HIV infection. “People who have diabetes get injected with insulin on daily basis and they live with it. It’s the same for me. I’d like to see AIDS as a terrible room mate who I’m forced to live with and not as something I’m living by”, Mahdy said. “Three years ago I used to work in customer service in a very reputable telecommunications company. I quit my job when I first discovered that I had AIDS and I had thoughts that I’m dying. Now I work as a Projects Manager for People Living with HIV. That’s my message; I want people with and without HIV to get rid of all the misconceptions towards this issue and have some support” he closes.


* Names changed

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