“When I discovered I was HIV positive, I was terrified. I thought I would die. I thought about suicide to make my death quicker. It is not necessary to explain how I got the virus. No one has the right to ask how I got it. I am HIV positive and that’s enough.” Sitting on a wooden bench close to the statue of Naguib Mahfouz in Cairo, Chehab speaks to Raseef22 with clarity and serenity.
There are no signs of sadness, tiredness, or depression on his face: “I live with the virus for two years now. The stereotype about those who have AIDS makes me laugh. People imagine them to be very skinny and taking their last breaths. I have no visible symptoms whatsoever, and I pose no danger to you. You will not see me cry and telling you how I regret it, or giving people advice about finding God and so on. I am fine, and happy, and my life is very normal. And I love listening to Mohammed Mounir songs.”
In 2014, after a visit to a testing clinic belonging to the national program for fighting AIDS, Chehab discovered that he had the virus. The clinic was situated in the center of Cairo at the time, though now it has moved to the Hamiyat hospital in Abbassya. “When I got to know I was HIV positive, I discovered the first fact about the virus. There is a difference between having HIV and getting AIDS as a disease. The virus lives in my body and I can control it with a treatment, and hopefully it will remain dormant. AIDS, however, is the last stage of a disease, when the body becomes prone to sicknesses, and usually people get to that stage if they are not getting any treatment.”
Between the Health Ministry, international organizations, and custom fees, how Egyptians get HIV/AIDS treatment?
“The real virus is the government that unjustly sees in those living with the virus a source of income”
Chehab explains that his main problem in Egypt is not with the virus itself, but with the way people look at him, and the government’s insistence on making him pay large sums of money in order to release shipments of his medication that he gets for free every three months.
Escaping the Health Ministry
The Health Ministry provides free HIV/AIDS treatment for Egyptians. They receive it monthly through various official dispensers in Cairo and other provinces. Chehab avoids going to the ministry, where they will ask him for his ID. He prefers to keep his privacy. It is likely he would meet someone he knows when going into, or out of the building, and this for him is a nightmare: “There is a real stigma and an absolute ignorance about the virus. This for me is a secret and I do not want anyone to know.”
Chehab went to a private doctor who advised him to go to an American charity called Aid for AIDS International. The charity provides advanced treatments for those living with the virus for free. There is a big difference between this treatment and the one provided by the ministry.
The ministry treatment is free and funded by the Global Fund to Fight AIDS, Tuberculosis, and Malaria. It consists of two programs, the first includes two medications Truvada and Sustiva, and the second includes Combivir and Sustiva. Patients take two tablets every day for their entire life.
The charity’s treatment, free as well, is more advanced and with less side effects. There is a number of available drugs and most of the time the active ingredients are all in one pill rather than two.
Chehab contacted the American organization and was asked to provide medical reports, blood, liver and kidney tests as well as letters from his doctor. After compiling all the required documents, the organization accepted to send him three packets of the new Stribild treatment every three months for free, he only has to pay for shipping.
The first shipment arrived in 2015 through a known shipping company. By the time the third shipment arrived, Chehab discovered that the Ministry of Health had raised the so-called “medical fees” on any treatment that arrives from abroad. It went from 10 Egyptian pounds (less than a dollar), to 900 (almost $100). The young Egyptian provided documents showing that the treatment is free and that he should not be paying any extra charges, but the customs refused and insisted on him paying the fees if he wants to get the treatment.
In Egypt many are living with HIV and many of them resort to that same American organization, and most face the same problem. Adel (34) is one of them. He is a salesperson in a furniture store. He could not pay the added fees so he stopped receiving his medication. But when one stops the treatment and then resumes it, their body might react in a life-threatening way.
The clinic of Dr. Jawhar
Amro Jawhar is a specialist in Sexually Transmitted Diseases who helps many of those living with HIV in Egypt. His clinic located in 6th October City has become a safe haven for many. Jawhar explains to Raseef22 that “there has been real advancements in the treatment of HIV, and therefore we now treat it as a chronic condition rather than a fatal one, like diabetes or high blood pressure. With the new treatments those who have the virus can lead more or less a normal life. Treatments can decrease the viral load so that the virus is undetectable. This does not mean that one is cured, but that the virus is under control. These treatments are called antiretroviral therapy and have proven to have a great success in controlling the virus and slowing down the disease.”
Until recent years people who had the virus were able to live without the treatment for a while until their immune system would collapse. But, according to Jawhar, “in the last years a new protocol appeared whereas the patient must immediately start treatment once the virus is discovered, because this increases their chances of staying in good health, and reduces the chances of transmitting the virus to others, making it extremely unlikely.”
Fees on free treatment
Raseef22 accompanied Chehab on his trip to resolve the issues with the Health Ministry so that he can receive his treatment. Chehab and all those who are also receiving their treatment from the american organization hope that the ministry will reverse its decision of raising the fees on the drugs. They find the fees to be unjust. Their virus should not be a way for the ministry to get more money. Raseef22 contacted Walid Kamal, an Egyptian doctor who is the director of the national program to combat HIV/AIDS at the Egyptian Health Ministry. He promised to help in resolving the problem and asked that the complaint be an official written letter. The letter was written and delivered to Kamal who promised to get it to the health minister in order to get a quick decision. As we write this article, the problem is yet to be resolved.
To be Syrian with HIV in Egypt
While we were writing this report, Raseef22 contacted a doctor who preferred not to give their name, but told us the story of a young man from Syria living in Egypt. The young man’s life is in danger as Egyptian laws do not allow foreigners who carry the virus to be on Egyptian soil. We met Amin (28) in one of Cairo’s cafes. Despite looking skinny, he seemed to be adjusting to living with HIV. “I live in Egypt for a year now, and I have been living with HIV since I was in Syria, but I did not start my treatment there because my immune system is strong.” Amin did some tests in Egypt and it showed that he was in need of treatment. He tells Raseef22: “I don’t know what to do to get treatment in Egypt. I heard that according to Egyptian law, any foreigner with HIV is deported, so I am afraid to go to the Health Ministry.”
Amin’s phone rings, his ringtone is a famous Mohammed Mounir song, so we tell him about Chehab and his love for Mounir. He is not surprised and says “who doesn’t love Mounir?”. Amin’s ringtone is an attempt to integrate among Egyptians. He now speaks with the same accent and knows all the streets of Cairo, but he is still a foreigner as far as the authorities are concerned.
Dr. Ahmed Safwat, director of the central labs at the Health Ministry confirms this to Raseef22 by saying, “in case a foreigner comes to the labs and tests show they were HIV positive, we contact the authorities (he did not mention who these authorities are) and they will deport them so that the virus does not spread.”
One of the Egyptian workers in the Joint United Nations program on AIDS/HIV tells us that “the All Saints Church shelter in Zamalek can help Amin in getting a free treatment. So we accompanied him on his trip to the church where one employee explained that the UNHCR is providing a number of services for refugees in general, and Syrians in particular through the church, including treatments for all kinds of diseases and for HIV. It is done in absolute privacy as the church does not give the data of patients to anyone in Egypt. Amin provided the needed documents, a letter from his doctor, and tests, and was asked to make more tests that the church would pay for. Amin will get his pills tomorrow.
A chaos of numbers
It is difficult to get exact numbers about people living with HIV in Egypt. Some organizations say that there are tens of thousands of cases, while the Health Ministry says it is not more than seven thousand. The ministry does not publish official numbers often. Two years ago, a report by the non-governmental Egyptian AIDS Society claimed the number of people living with HIV has reached 8800 in 2014, out of which 2147 receive free treatment from the Health Ministry. Ahmed Safwat says that in 2015, only 1163 cases were discovered, in addition to hundreds of cases discovered by the central labs this year.
Doctor Ihab al-Kharrat, director of the Freedom from Drugs and HIV program says that the cases that are discovered in Egypt are between 1 and 2 percent of the actual numbers. On the other hand, Doctor Walid Kamal, director of the program to fight HIV, explains that 82% of HIV positive people are men, and 18% are women. 19% were transmitted through same sex relations, 39% through drug use, 40% through other means, and 2% from mothers to their children.
But moving away from these messy numbers, Chehab says that “we have gotten used to the virus and it is no longer a problem or a concern.” He adds that, “the real virus is the government that unjustly sees in those living with the virus a source of income, and the more damaging virus is the stigma that pushes us to burry our secrets in a box and hide it from even the closest of people to us.”
The names of the people living with HIV in this article have been changed.