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South African Muslims Attitude Toward HIV

Fotobabble Slideshow.

 

Fifteen years ago Faghmeda Miller became the first Muslim woman in South Africa to publicly declare her HIV-status. She founded the organisation Positive Muslims in 2000, after her husband died of the disease.


At first, the Muslim community saw her as an outcast. Now she’s viewed as a role model. Since then, religious leaders have also started talking about HIV and Aids, realising that Muslims are not immune.

The Jamiatul Ulema (organisation of Muslim scholars), Islamic Relief, a global charity organisation, and Islamic Careline, a counselling helpline, joined forces to start the Muslim Aids Programme; recognising that Muslims are in need of counselling and support.

But how do Muslims view the virus, and what are their attitudes toward other Muslims living with HIV?

A Facebook discussion made it clear some feel it’s an important topic which must be discussed.

And a stroll through the Oriental Plaza in Fordsburg, Johannesburg, revealed a surprising lack of judgement.
To get a sense of the Muslim community’s attitudes toward HIV, Bibi-Aisha Wadvalla spoke to several Muslims of all ages to gauge how they view Muslims living with HIV.

She asked what they think of calls from religious scholars and counselling groups for HIV testing to be compulsory before the Muslim marriage ceremony can be performed.

The consensus is HIV needs to be openly addressed and dealt with without stigma.

I Will Survive

The hospital waiting room is heaving. Women are squeezed in on chairs along the corridor. Ayanda Mbuli sits quietly amidst the chattering and hospital noise. She appears much younger than the other women. Her blue jeans and peach ruffled shirt make her look frail, compared to the almost matronly appearance of the others. Most of the women in the corridor appear healthy, but they have one thing in common with Ayanda – they are all fighting cancer.

For the next five weeks, 35-year-old  Ayanda will loan R36 every week day from family members for the 33km taxi trip from Tshepisong on the West Rand to Charlotte Maxeke Hospital near the  Johannesburg city centre.
Monday to Friday, Ayanda will report to the academic hospital’s Oncology department to receive her dose of life-saving radiation therapy.

Her body is accustomed to taking powerful life-saving drugs on a daily basis. Every day, Ayanda twice swallows a regimen of antiretrovials.

Just over two years ago Ayanda was three months pregnant with her second child. On a visit to an ante-natal clinic she received HIV counselling, (national guidelines stipulate that all pregnant women receive HIV counselling at primary health care facilities) and opted to be tested for HIV. The result returned positive.

“My previous boyfriend, the father of my first son, died of Aids so I must have been infected by him”, she states matter-of-factly. Ayanda recalls her outlook being positive. She didn’t blame her ex-boyfriend, nor did she feel sorry for herself. She simply accepted it.

Afterward her new partner and father of her then unborn baby tested negative. Two and a half years later they are still together.

All pregnant women who test HIV-positive in state institutions receive ARV treatment at 14 weeks and they are advised to continue taking the drugs after giving birth. Thanks to Ayanda’s decision to take the drugs her baby was born HIV negative.
The doting mother kept herself busy caring for her children and she recalls feeling in control of her life. However, it all changed a few months ago.

Ayanda confirms that there is a lot of stigma and misinformation associated with cervical cancer with some older women in hospital quizzing her on “how did we get cervical cancer when we aren’t sleeping around.”

It started with severe lower abdominal pain and backache. She decided to visit her doctor who told her “there’s something there, but I’m not sure”.

The doctor referred Ayanda to Chris Hani Baragwanath Hospital where a pap smear was done, her second in four years. A pap smear is a screening test for cervical cancer. Cells are scraped from the opening of the cervix with a wooden spatula, then examined for abnormalities.

Her first was done at a local clinic in 2008. “I was told to have it done, so I did.” Other women aren’t as willing. “Many are afraid to have it, they think it’s painful.” The invasiveness of the procedure is often off-putting. “I explain it to them and tell them it isn’t so bad.”

Stigma and Misinformation

A month later Ayanda returned for the results, and was informed she had cervical cancer, a disease often associated with HIV.

Ayanda confirms that there is a lot of stigma and misinformation associated with cervical cancer with some older women in hospital quizzing her on “how did we get cervical cancer when we aren’t sleeping around.”

“With me, people know my profile, they know I don’t sleep around, but only some understand.”
There is also a misconception that HIV causes cervical cancer and vice versa; with some even thinking having cervical cancer means one is infected with HIV too. “This isn’t true”, says Dr Trudy Smith, gyneacological oncologist at Charlotte Maxeke. “Women with HIV have weakened immune systems which make their bodies more susceptible to contracting the Human Papilloma virus (HPV). You need your CD4 cells to fight HPV. If you’re HIV-positive and your CD4 cells aren’t working, your chances of getting HPV infections are higher.”

Almost 7000 new cases of cervical cancer are reported annually in South Africa, with an estimated 3300 resulting in death.  Because cervical cancer is the most common cancer amongst HIV-positive women, it is now regarded as an Aids-defining illness. “But”, asserts Dr Smith, “any woman can get cervical cancer.  You don’t have to be HIV-positive, or poor, to get it.”

 

“Cervical cancer originates from HPV which silently grows in the cervix and later develops to invasive cervical cancer. A difference between HIV-positive and HIV-negative women is that HIV-positive women commonly show invasive cancer ten years earlier than women who are HIV negative”, explains Dr Smith.

Currently, South Africa’s public health screening procedure for cervical cancer is three free pap smears being offered to women at the ages of 30, 40 and 50. There are no set guidelines for HIV-positive women. “Unfortunately South Africa doesn’t have different guidelines for HIV-positive women, but many units do it individually. Here we do pap smears for HIV-positive patients. Really, any HIV-positive woman should demand a pap smear in primary health facilities.”

Oncology nurse Sister Lucy Nqubezelo agrees. “Women should go for annual pap smears. Government resources just aren’t available for our patients. Ayanda is an exception, she had a pap smear done early and was diagnosed early.  By the time most women come to us they’re already in Stage 3.”

Dr Smith concurs. “The vast majority of women will present at stage 3, when they bleed from their vagina or rectum.”
Cervical cancer presents in 4 stages, with stage 4 being the most serious. The five year survival rate decreases for each stage, with stage 1 having an 85% survival rate, and stage 4 a 15% chance.

But Dr Smith doesn’t believe increased screening is the solution. “The problem is that screening in itself has its own inherent problems. Once you’ve screened them they need to come back. Then you need staff to carry out various procedures, and we just don’t have that staff fully available. What we need is a one stop same day service. We mustn’t lose sight of screening, but vaccination in young girls prior to them being sexually active is key.”

At present, two HPV vaccines, Cevarix and Gardasil are available in South SAfrica’s private health sector.  At a cost of R1000 per shot (3 shots are needed) it’s unaffordable for most, it will be a while before HPV vaccination becomes the norm.

Meanwhile, Ayanda’s quiet strength keeps her steady. She does as told by healthworkers, positive she’ll survive both HIV and cervical cancer.

Finding Acceptance Through Faith

She leans back into the cream-coloured couch, her long legs stretched out before her, looking casually at ease. But her facial expression is guarded, her arms crossed; revealing a guarded woman who’s wary of trusting. 

Laila*,a Muslim woman, is HIV-positive. She was infected by her husband. Her tall frame seems frail, covered by loose trousers and a billowing tunic shirt. Large blue eyes appear above sculpted cheekbones. On a gentle Sunday afternoon, she pours out years of abuse, acceptance and faith.

Aged 20, Laila fell in love, married the man she loved and fell pregnant almost immediately. A few months later, the couple discovered her husband was HIV-positive. At the time Laila tested HIV-negative, and her son, now 20, was born without the virus. It was 1991, a time when Aids was just starting to make the headlines, but not well, barely understood with massive stigma attached to be positive. Laila stood by him. “I loved him, I didn’t think his status mattered. I’m not a person to judge.” In denial, and refusing to see a doctor, her ex-husband became increasingly became angry at his situation, turning to alcohol, returning her love with physical abuse. 

This continued for eight years, a period she recalls as one of harrowing pain and torture. There was one reprieve, -he always used a condom. Eventually, she couldn’t endure any more. They separated, with Laila taking out a restraining order against him. But one night he ignored it and. Laila’s life changed irrevocably. “He came into the house, and locked Yaseen*, (their son, 7 at the time) in the bedroom. He gave him Stopayne trying to knock him out. And then he came for me.” Laila relays the story calmly. Sitting next to her, Yaseen is equally calm. “That night he abused me senseless. It lasted for hours…he just kept hitting me. It was so bad I was in hospital for a week.” The violence was not confined to fists and kicks. After he beat her, he raped her. 

“I’m at a point where I’m comfortable with this, where I’m coping well. I’ve gone through a long journey, faith has helped me through it.”

Four months later, Laila was diagnosed HIV-positive. She recalls taking it in her stride. “My fear of him was more than my fear of being infected. I had to break through my barrier of fear, the restraining order was the bravest thing I did. I was in denial that I was an abused woman.”

At that time, support organisations like Positive Muslims and the Muslim Aids Programme didn’t exist. Later Fagmieda Miller would establish Positive Muslims. Laila comes from a home where early on, she had to rely on herself. Her mother committed suicide when Laila was 16. Soon after, Laila converted to Islam. She says she turned to God for support. “No, there weren’t any support bases. But I didn’t need it. I’m a very independent person, I only need my Creator. My reliance on Him was enough for me to get where I am today.”

Today, Laila is a strong woman who is completely accepting of who she is. “I’m at a point where I’m comfortable with this, where I’m coping well. I’ve gone through a long journey, faith has helped me through it.” 

 

She’s also a strong mother who has raised a well-mannered young man with whom she shares a remarkable bond. Two years ago, when Yaseen turned eighteen, Laila disclosed her status to him. “I suspected it, because I found strange meds were delivered to her every month even though she wasn’t sick. But it still came as a shock to be told”, he recalls. “I understand why she kept it hidden, I don’t think I would have coped at a younger age.” 

 

Disclosing her status
Yaseen has told one close friend of his mother’s status, while Laila has confided in a small number of friends. One of those friends is someone she regards as a spiritual companion. “We met at a halaqa (religious study circle) and I just knew I could trust her. She’s been very understanding and supportive. I’ve been blessed with a good friend and a sheikh (spiritual mentor) who knows. I’m on a spiritual path now”, she murmurs serenely.

Eagerly, she shows off a room in her house, her sanctuary. A prayer rug lies open on the warmly carpeted floor. Arab-style floor seating lines one wall, frames with verses from the Quran adorn the walls, the Quran and other books take up a corner of the room. It exudes an air of peace and contentment.

“I try my best to live my life as a good Muslim. This is where I’ve found peace”, Laila explains. “This is where I feel accepted.” While Islam is accepting, not all Muslims are. “There are dribs and drabs of people whose attitudeshave changed, but humanity as a whole has a long way to go. People don’t have a deeper level of spirituality; they don’t know the true meaning of Islam.” 

Although Laila is accepting of who she is, she’s wary of being labelled if she publicly declares her status. She’s also afraid Yaseen may suffer because of it. So she discloses her status only to those who she feels need to know. One is her second ex-husband. A friend of her first husband, Ahmed* knew his friend died of Aids. “He was very accepting when I told him I’m living with HIV. We were married for 3 years.” The marriage ended when his family discovered the truth. “They pressured him to divorce me, and eventually, he did.”

Laila married for a third time, to a Saudi Arabian. Here too, she was honest about her status. “But it didn’t work out”, she sighs. “Look, the man wasn’t who he said he was. I discovered he was a pathological liar, and he just wasn’t a good man. So I left.” 

Her previous tarnished experiences have not sworn Laila off marriage. She says she’ll consider it if she meets a good man.

 

 

Support group

Although Laila is not ready to be a public champion for Muslims living with HIV, she wants to do this on a private level. Laila wants to start a support group for other Muslim women secretly living with HIV. “You have people counselling those living with HIV, but they aren’t positive. They haven’t experienced it, so how can they understand. People living with it, who’ve accepted it and are positive in their outlook, should be the ones running support groups.”

She is confident of her ability to be an influence on others. “Look, there is a way. It may sound like it was easy for me to deal with everything, but it wasn’t. It took me a few years, I went on personal transformation workshops, which were empowering. And I relied on my Creator to get me through. I didn’t allow my ex to destroy my life, and now I want to share my journey with others.”

I want to give hope to others. I could have been a victim or the victor. I chose the latter, and I have to say, I’m pretty awesome”, she notes with a cheeky grin.

 

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