Tuesday,12 December, 2017
Current issue | Issue 1124, 29 November - 5 December 2012
Tuesday,12 December, 2017
Issue 1124, 29 November - 5 December 2012

Ahram Weekly

Starting to breathe again

As the world marks World AIDS Day on 1 December, Victoria Harper interviews some of those living with the HIV virus in Egypt

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Al-Ahram Weekly

Salwa suspected that something was wrong when the head nurse brought two policemen into the hospital room. She and her husband Mohamed were waiting there for lab results prior to his leg surgery. The police approached Mohamed and in hushed voices asked him two questions: had he ever been out of the country and had he ever had sex with a foreigner?
Mohamed’s answer was no to both questions. A few moments later, a nurse approached him and said something that Salwa couldn’t hear. The next thing she knew, they were leaving the hospital. Mohamed had been refused the surgery.
Mohamed was a drug addict, and Salwa was accustomed to his keeping secrets. She wasn’t surprised that he wouldn’t tell her what was going on. Two days later, when she went back to the hospital to finish some paperwork, a doctor pulled her aside and told her to get an HIV test.
“If it is positive, stay with your husband. If it is negative, leave him immediately,” was the doctor’s advice.
In Egypt, people with HIV, the virus that causes AIDS, are often turned away from hospitals once their condition is revealed. So, Mohamed’s case is far from unique. It is against the law for an Egyptian hospital to test a patient for HIV without his or her authorisation, but often tests are conducted anyway, especially if the doctor suspects that the patient is a drug addict, said one neurosurgeon who spoke on condition of anonymity.
“If someone looks like a drug addict, or has tracks on his arm, hospitals will test him for HIV even without asking his permission,” he said. So what do people with HIV do when they need surgery? The answer is that either they conceal their condition and hope not to be discovered, or do without, like Mohamed.
One surgeon interviewed by Al-Ahram Weekly had a patient who needed brain surgery. The man told him that he had HIV, and this particular surgeon had no problem with that. He scheduled the surgery and told his team to take the necessary precautions. “However, on the day of the operation, my surgical partner did not show up, so I had to operate alone,” he said.
Such fearful attitudes, common as they may be, needn’t exist in the medical community, if only because the Ministry of Health has trained staff at three hospitals specifically to treat and operate on people with HIV/AIDS: Ras Al-Tin Hospital in Alexandria, Umm Al-Masryeen Hospital in Giza, and the Abbasiya Fever Hospital in Cairo.
In Salwa’s case, it turned out that she too was HIV positive. Her doctor explained the initial lab results to her and sent her to Cairo’s central laboratory near the Ministry of Health for confirmation. From there, she was directed to one of the government’s antiretroviral treatment (ART) distribution centres that dispense the medication Salwa must take for the rest of her life. Since then, she has been struggling to cope with her condition, physically, psychologically and socially.
“I had no idea what HIV was or what it meant for my family and me,” she said. But for the last two years Salwa has had to take three pills a day as part of a treatment that should stave off the onset of AIDS. The pills are dispensed for free from the National AIDS Programme, which has distribution centres for ART in 11 governorates across the country.
As a result, for anyone contracting HIV, as is possible through unprotected sexual intercourse, blood transfusions, or intravenous drug use, there are three hospitals that have doctors that are trained and theoretically willing to operate should that person need surgery. The state is also willing to provide life-saving drugs free of charge.
However, unfortunately these things are not necessarily true. In practice, the supply of ART drugs, on which the life of an HIV patient depends, can be erratic, as Salwa discovered.

THE AVAILABILITY OF MEDICATIONS: Over the last two months, Salwa has been without the pills for two weeks on two occasions. At the centre she was told that the medications were being “held up in customs”. Whatever the reason behind them, such delays are not only a temporary disruption in the course of treatment, but they could also undermine the ability of the medications she is taking to help her.
Salwa knows from her support group that if she goes off her medications, the HIV virus in her body may build up defences against the drugs, and over time they will cease to be effective. “The drugs they give us are the only ones available in Egypt. If they stop working, I have nowhere else to turn,” she said.
Ehab Abdel-Rahman, who runs Egypt’s National AIDS Programme from his office at the Ministry of Health, said that what Salwa had said was incorrect. “The medication would never be unavailable for more than one day because we practise stock management to ensure that if the pills run out in one location, new pills will be moved there immediately from another centre,” he said.
There are hundreds of women in Egypt with stories like Salwa’s who are now dependent on this government service for their survival. If the National AIDS Programme lets them down, their future and the future of their children will be in jeopardy.
While it is easy to believe Salwa’s story, coming from someone whose life is at stake, just as it is tempting to take the word of government officials at face value, the truth may lie somewhere in between. This is definitely the case with the figures the government has released on the prevalence of HIV in the country.
The government maintains that Egypt has only 5,000 or so cases of HIV, but independent reports by the UN, WHO and NGOs working in the field estimate the figure to be closer to 20,000.
The groups most affected by the virus are not only drug addicts or homosexual men. This image of HIV as an affliction exclusively attacking the “morally deviant” is false. In Egypt, cases of women like Salwa, who have never taken drugs and have monogamous relations with their husbands, are on the rise.
Increasingly, women are being infected with HIV by their husbands. Salwa was relatively lucky, for she gave birth to her son before she contracted the virus. Other women have had to cope not only with their own affliction, but also with that of their offspring.
According to official figures, around 400 new cases of HIV were reported in Egypt in 2011-2012. Of these, 20 per cent were women. The reports specify that 60 per cent of cases came about as a result of heterosexual sex, and two-and-a-half per cent were from mother-to-child-transmission during pregnancy and childbirth.
The precautions that HIV-positive mothers must take to save their unborn children from the virus are simple. They have to take their antiretroviral medication, not breastfeed, and preferably give birth by caesarean section. However, in order to take these precautions, the women in question must first know that they themselves are infected.
The government offers confidential testing, counselling and medication to people living with HIV free of charge through its various HIV treatment centres. This is the good news. But even with extensive government assistance, people with the virus generally have to live in secrecy, hiding the details of their affliction and concealing the reality of their needs, for family and friends are not likely to be sympathetic.
In the public mind, HIV is still a lethal virus that can be transmitted through sharing a meal with someone or hugging them or getting into a taxi with them, and these are but a few of the preposterous notions that even educated people in this country believe. So, those with HIV are not only faced with the difficulty of finding medical treatment and psychological help, but also of maintaining a normal life.

ASMAA’S STORY: Two years ago, an Egyptian feature film directed by Amr Salama exposed the bigotry people with HIV routinely encounter in Egypt. The film tells the tale, based on a true story, of a woman called Asmaa, who, as a person with HIV, is unable to find a doctor to perform her much-needed gallbladder surgery and is forced to quit her cleaning job at Cairo Airport because her co-workers collectively demand her dismissal.
One doctor finally agrees to operate on Asmaa, but only if she can convince him that she did not contract the virus through some “sinful deed”. The film opened just a day before the 25 January Revolution, so it didn’t generate the public debate its producers had hoped for.
However, Asmaa’s story sheds light on some of the widespread misunderstandings that exist in the country when it comes to HIV and its complications.
Public opinion surveys have shown that almost 70 per cent of Egyptian college graduates would refuse to get into a car or shake hands with someone who has HIV. So imagine the kind of prejudice a woman with HIV living in an impoverished neighbourhood, as Salwa does, would likely face from her neighbours. As a result, no one outside the clinic, her support group and her immediate family knows that Salwa has HIV. She and her family have decided to keep it a secret.
Because of the stigma associated with the virus in Egypt, it’s no wonder that people with HIV are afraid to declare their condition or even seek treatment for it. Low self-esteem and fear of rejection are common sentiments shared by Egyptians with HIV. The current figure of 760 people seeking ART in 2011 could be a lot higher if society was better informed about the nature of the affliction.
Physical care is not the only thing that people living with HIV need. They must also have psychological care and social support. But neither is readily available.
Take the case of Sanaa, another woman whose husband infected her with HIV. When she broke the news to her parents, they not only turned their backs on her, but they also took her children away. Then came the ultimate threat. They swore that if she tried to sue for custody of her children, they would tell the judge she had HIV.
The story of Sanaa and other similarly heartrending tales have been published by MENA-Rosa, a UN-affiliated group. The name combines the acronym for the region (Middle East and North Africa) with the name of Rosa Parks, the first black woman in the US to refuse to give up her seat to a white man on a bus in the 1960s, thus sparking off the civil rights movement.
The majority of women living with HIV in Egypt today have been infected by husbands with a propensity for risky behaviour, often involving drug use and unprotected sex. Education about HIV and AIDS rarely makes it to these wives. So when they are infected, they have no idea what to do. And they are lucky if they discover they are infected in time to get treatment.
Learning that one is infected and getting information about the affliction is only the first step. To be able to function, keep a job and receive medical treatment are the real challenges. Here is another story illuminating how HIV may preclude access to medical care.
A woman in Cairo tells her dentist that she has HIV. His reaction is neither to take precautions, nor to ask her to wait until he finds out what precautions need to be taken. Instead, he leaves the room and has his assistant request that she leave the clinic.
The woman reported this to an official at the Ministry of Health, and the official bluntly advised her to find another dentist and not to tell him about her condition. He obviously was convinced that she wouldn’t find a single dentist in the country who would willingly offer routine services to a person with HIV.

THE FIGHT AGAINST PREJUDICE: Such prejudices about HIV and AIDS can easily be attributed to ignorance. In this case, one might expect that with better education and awareness, prejudice would subside.
Unfortunately, this hasn’t proven to be true. Ignorance is not the only culprit. An entire industry of prejudice-creation is underway, both in the media and film. If people are scared of people with HIV, it’s not because they are ignorant, but rather it’s because everything they are given to read, hear and see about the topic by those who should behave more responsibly is terribly frightening.
Take, for example, the 1992 movie Love in Taba in which young men on vacation in Sinai are infected with HIV through amorous liaisons with attractive female Israeli agents. In the press, the authorities are reported as “uncovering” cases of HIV in the same way that they discover terrorist cells, then escorting the “culprits” to secure medical facilities where they are held in quarantine for public protection.
While some countries are working to reduce misconceptions about HIV through proper medical training, public health services, and sex education in schools, in the Middle East, the taboo is stronger than the need to tell the truth.
The HIV virus cannot be spread through water, food, or on objects like doorknobs or toilet seats. It is not spread by mosquitoes or by other insects. A person cannot “catch HIV” by playing with, being in school with, shaking hands with, hugging, or even living with an infected person.
In fact, HIV is much less contagious than many other infections, including chickenpox, flu, or hepatitis B. HIV can spread only when an infected person’s body fluid (blood, semen, vaginal fluid, or breast milk) enters the bloodstream or comes into contact with the mucous membranes of another person.
The fight against HIV will never be won with medication and education alone. It won’t even begin until the taboo is removed. HIV needs to be discussed on a regular basis, just like diabetes and hepatitis C. It must be addressed clearly, without moralising and blame. People living with HIV are not morally inferior: they are patients needing regular treatment, and they are perfectly capable of taking care of jobs, families, and friends.
Joseph Nabil has been trying for nine years to reverse the prejudice against people living with HIV. Working in a small office in a flat in the working-class neighbourhood of Shobra, he runs a drop-in centre for Freedom, a non-profit organisation helping drug addicts get clean or at least stay safe.
Since 2003, workers and volunteers at the Freedom programme have been reaching out to IV-drug users on the streets to offer them psychological and medical support. The programme has three drop-in centres equipped to provide what they can, from clean clothes and a hot meal to medical care and counselling. If all an addict wants is a condom or a clean needle, those are available too. Safety is the priority.
Special attempts are made to contact female drug-users who suffer from even greater stigmatisation than their male counterparts, which makes getting treatment even more problematic for them.
“A female drug-user with HIV is probably the most stigmatised person alive, and the most hidden. We have women volunteers who are former addicts, some of whom have HIV, who seek them out, approach them directly, and bring them to the centre for testing and support,” Nabil explained.
The value of such NGOs and the support they provide cannot be overstated. Salwa now works for an NGO in Alexandria that assists vulnerable women. Through an outreach initiative, she seeks them out and helps them gain enough confidence to come to the programme for assistance and education.
Salwa is still married to Mohamed, who has been clean for eight months, and together they are raising their virus-free child. At the end of the Weekly interview, Salwa said that “without my support groups I would not have been able to manage. I felt so vulnerable and so frightened. I was suffocating. With the help of others, mostly people with HIV, I started breathing again.”

The HIV hotline, providing assistance and information for those concerned about HIV, is open from 9am to 9pm seven days a week on 0800 700 80000.

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