A new study estimates that more than 330,000 HIV-positive South Africans lost their lives between 2000 and 2005 as a direct result of government delays in rolling out a treatment programme.

The report by researchers at the Harvard School of Public Health was published in November in the Journal of Acquired Immune Deficiency Syndromes (JAIDS).

The researchers attributed the deaths to government policies that blocked the distribution of life-prolonging antiretroviral (ARV) drugs long after neighbouring countries had launched such programmes.

Using data from UNAIDS and the World Health Organisation to estimate how many people would have benefitted from ARVs, the authors compared the number of people who actually received the drugs either for treatment or for the prevention of mother-to-child HIV transmission (PMTCT).

Compared with what neighbouring Botswana and Namibia, with similarly severe epidemics and resource constraints, managed to achieve in rolling out treatment over the five-year period, they concluded that South Africa fell far short of what was "reasonably feasible".

Botswana and Namibia were rolling out PMTCT and ARV treatment programmes at a time when former President Thabo Mbeki was still questioning the link between HIV and AIDS, and his health minister, Manto Tshabalala-Msimang, was describing ARVs as "poisons".

The authors pointed out that the South African government declined the offer of free nevirapine from pharmaceutical manufacturer Boehringer Ingelheim in 2000 and delayed the disbursement of a 2002 grant from the Global Fund to Fight AIDS, Tuberculosis and Malaria to fund treatment in KwaZulu-Natal Province.

Botswana's national PMTCT programme had been underway for four years when South Africa finally launched its PMTCT programme in 2003, after a protracted legal battle with the Treatment Action Campaign (TAC), a local lobby group.

A 2001 High Court decision ordering the state to roll out nevirapine was upheld by South Africa's Constitutional Court, which ruled that by restricting the availability of the drug to just 18 pilot sites, the government was violating the constitutional rights of women and their babies. The study authors estimated that the delay resulted in 35,000 babies being born with HIV.

By 2005, South Africa had achieved 30 percent coverage of PMTCT services, compared to 70 percent in both Botswana and Namibia; its ARV treatment rollout had only been underway for a year and had reached 23 percent of those in need of the drugs, compared to 85 percent in Botswana and 71 percent in Namibia.

The authors of the Harvard study suggested that South Africa could have started its ARV programme four years earlier and scaled up coverage as the drugs became cheaper to achieve 50 percent coverage by 2005.

Using UNAIDS estimates of the number of deaths resulting from AIDS in South Africa, they projected that the availability of ARV therapy could have added 2.2 million years to the lives of HIV-positive people over the five-year period. They calculated that a further 1.6 million years were lost due to delays in implementing a PMTCT programme.

Should leaders be held accountable?

South Africa has the highest HIV caseload in the world: of approximately 5.5 million people living with the virus, 350,000 are accessing ARV treatment via the public health sector, while a further 524,000 are still in need of the drugs, according to the TAC.

"Access to appropriate public health practice is often determined by a small number of political leaders," the authors of the Harvard study concluded. "In the case of South Africa, many lives were lost because of a failure to accept the use of ARVs to prevent and treat HIV/AIDS in a timely manner."

Commenting on Friday in The Times, a local newspaper, Zachie Achmat, former chairperson of the TAC, called on South African President Kgalema Motlanthe and the government to hold Mbeki and Tshabalala-Msimang liable for the deaths of thousands of HIV-positive people.

"They should be called to address an independent judicial board so that justice can prevail for those who lost loved ones at their hands," he said. "They must be held accountable."

Dr Francois Venter, president of the Southern African HIV Clinicians Society, noted that Mbeki and Tshabalala-Msimang were not alone in bearing responsibility for deaths resulting from the delay in rolling out treatment.

"I think the Cabinet as a whole needs to account, our leaders need to understand the implications of their decisions; they are very culpable," he told IRIN/PlusNews.

"But everybody should have been out at the forefront challenging this: the churches, the trade unions, civil society," he said. "If it wasn't for a few brave activists and people living with HIV, there would have been a lot more people dead."

Neither Mbeki nor Tshabalala-Msimang, who is now the minister in the Presidency, have responded to the study's findings.

PlusNews   

The TsaBotsogo Community Development and Training Centre, based in Dobsonville, Soweto, a sprawling township south of Johannesburg, South Africa, works with teachers to identify vulnerable children in the community and refer them to the centre’s trained volunteers for counselling. This year the organisation took 30 of the children to camp for a week, hoping to give them a chance to play, make friends and build better relationships with TsaBotsogo volunteers, said executive director, Kefilwe Ndaba.

“The Rolls Royce of Healing?”

The camp was where you might least expect to find talk of alternative medicine, chakras and biofields, but Amanda du Toit and a several other “energy medicine practitioners” arrived to help balance the children’s energies, she said.

The term “alternative medicine” is often used to describe practices outside the realm of your typical MD or nurse, and can include homeopathy, the ancient Indian practice of Ayurvedic medicine and naturopathy, in which healing is believed to be associated with nature.

Practitioners of energy medicine like du Toit believe physical illness is caused by imbalances between such energies in the body. They say they use physical energy, such as vibration, as well as less tangible forms of energy like "biofields", or the subtle energy believed to be within all living things, to heal certain physical illnesses.

Using a system developed by a United States-based entrepreneur known as Master Del Pe, these women say they have learned to read chakras - the supposedly seven centres of spiritual energy in the human body in yoga philosophy - and can open and close these centres in order to balance the energies in the body.

By the end of the session, most of the younger children were asleep, while the older ones sat quietly with their eyes closed. The session involved no physical contact or verbal communication between the women and children, which du Toit said was an advantage when working with children, who might not be able to verbalise what they were feeling.

"[Energy medicine] is like the new generation of healing; it's very effective - like the 'Rolls Royce' of healing," said du Toit, who characterises Del Pe's approach as a mix of Eastern religions like Buddhism and Hinduism. "We believe it's the medicine of the future."

Del Pe came to South Africa in 2006, punting free lessons in his newly developed form of energy healing geared to help those living with HIV and AIDS deal with opportunistic infections and other related illnesses.

He has returned several times since, charging roughly R1,500 (US$191) for one-day courses such as "Charting Your Seven Life Cycles".

A very grown-up reality

According to a 2006 study by South Africa's department of education, 15 percent of children will lose at least one caregiver to HIV/AIDS by the age of 14 years, placing them at an increased risk of poverty, malnutrition, exploitation and school absenteeism.

The South Africa government has spent more than R563 million (US$72m) since 1997 on community-based interventions aimed at, among other objectives, safeguarding at-risk children. If the country meets the goals set out in its national strategic framework for HIV and AIDS, 30 percent of vulnerable children and child-headed households should be able to access social benefits and grants by the end of 2008.

However, the psychosocial and emotional needs of children like those at TsaBotsogo are often harder to budget for and even harder to identify, according to UNAIDS case studies.

"Many of them feel like they are alone," Ndaba said. "Some of them talk, say they know they don't have a parent, that it is difficult to go to school with nothing in their stomachs, but some are too reserved," she commented. "It's not easy for them to open up, that's why we've been playing lots of games, praying for them, hugging them, trying to get them to trust us and open up."

Sophie Kekana, a counsellor at TsaBotsogo, said working with the children was challenging. "You can see from afar their needs - some are sick or hurting, others are bitter. A lot of them are poverty stricken; you can see it in the way they eat.”

“At least now they know that they are not alone, that they have mothers outside [of their families] that care for them," Ndaba said.

Consent underlines all approaches

As the epidemics of HIV and AIDS drive on, people may be turning to new ways of caring for those affected, but child rights activists caution that the consent of both parents and children is essential, regardless of the type or style of therapy.

"[Alternative medicine] might be perfectly harmless but my concern is: ‘how would you explain something like this to children's mothers?’" said Noreen Ramsden, materials developer for the Durban-based Children's Rights Centre.

According to Ramsden, administering alternative therapies like energy healing without informed parental consent reflected a certain element of manipulation, and threatened to undermine a parent's right to guide their children's upbringing.

TsaBotsogo’s Ndaba admitted that energy healing was not originally on the programme, and was therefore not explained by teachers to caregivers at the time they obtained consent for the children to go camping.

Helen Meintjies, a senior researcher at the Children's Institute at the University of Cape Town, agreed with Ramsden, cautioning that the danger of manipulation was very real when working with people who were unwilling to say ‘no’ in the face of something they viewed as a favour.

"Consent issues apply across the board when working with children, regardless of the activity, and that means kids must be informed [of the activity] in a way that's understandable," Meintjies said. "Don't underestimate the importance of kids understanding what they are entering into."

It’s house music. It’s dinner, drinks and a movie. It’s first dates, first loves and first heart breaks. It’s being young - and it’s also about HIV, as a new global campaign against stigma aims to redefine the face of the virus.

“Does HIV look like me?” is run by a US-based organisation called Hope’s Voice International. Partnering with groups in countries such as Cambodia, South Africa and Swaziland, the campaign has chosen to use the faces of young people living with HIV – which it calls ambassadors - to challenge the stigma associated with the virus.

In each country, their photos will feature on posters alongside the campaign slogan.

Educating and empowering

Jason Wessenaar thought HIV happened to other people, until he was diagnosed positive while donating blood in 1999 at the age of 24.

“Back then, I didn’t think I could be touched by HIV,” said Wessenaar, who had been working as an AIDS activist at the time. “All of a sudden, my perspective changed, my focus changed, my dreams change, my vision of things changed because I was personally affected as compared to before when I was just a person trying to do good.”

According to Adam Garner of Hope’s Voice International partner International Planned Parenthood Federation, local partners taking ownership of the project was key to the campaign, adapting it to the cultural contexts in all six countries. “The epidemic is very different in all countries in the world in the way stigma manifests itself and in the way the virus is predominantly transmitted.”

Wessenaar, who works for the international health organisation Jhpiego, is one of South Africa’s 28 new ambassadors. Now in his 30s, he is slightly older than the global campaign’s usual faces, generally aged between 14 and 29.

He noted that in South Africa, stigma often meant people delayed disclosing. “My experience in South Africa is that few people [in the 14 to 29 year-old age bracket] are open about their status. At that age, they’re already dealing with a whole lot of other things and they don’t want to feel surrounded by HIV."

Sedumedi Soke, 23, just became a card-carrying member of the Treatment Action Campaign and is one of the youngest of the South African ambassadors. He was diagnosed HIV positive six months ago. After encouragement from his support group, Soke decided to disclose to his family; but the experience was shocking.

“It’s been very difficult because of the environment that I am in,” Soke explained. “There’s more than the virus, there are hate crimes, discrimination, stigma, people being labelled like they were the virus itself. It’s hard because HIV-positive people already have so much to deal with.”

But Soke said his experience as an ambassador has given him strength and that he hopes his image will say more than words can - providing young people like himself with a sense of hope for their future.

“I found that for the first time, I was looking at myself in the mirror and speaking openly to a broad group of people,” he said. “It helped me get back the confidence, hope and self-esteem I had lost.”

Inadequate patient tracking at one of South Africa's largest antiretroviral (ARV) distribution sites, has led to many patients disappearing from the clinic before treatment starts, a new report has found.

The report by the Reproductive Health & HIV Research Unit (RHRU) of the University of the Witwatersrand, based on a 2006 review of patient files at the Tshepong Wellness Clinic, about 120km southwest of Johannesburg, shows that a standard percentage - about 14 percent - stop taking treatment, but more than 20 percent of patients never get to the treatment stage.

An initial CD4 count (measuring the strength of the immune system) for each patient - those who began treatment as well as those who did not - was an average of 95. This led researchers to question why patients with a CD4 count of below 200, who clearly qualified for free treatment, did not start receiving it.

Patients making a late start in taking ARVs probably contributed to the clinic's high mortality rate during the first months of treatment: about 80 percent of patients succumbed to tuberculosis, said Dr Francois Venter, head of the RHRU.

"It seems like if patients initial CD4 counts are so low, by the time drugs start to kick in ... they're so vulnerable," said Ambereen Jaffer, the RHRU's technical advisor for monitoring and evaluation. "They're so sick to begin with even when they start on treatment they are at risk of dying on treatment and that risk isn't reduced until after a couple of months."

The RHRU's staff could not determine where in the pre-treatment process patients at Tshepong clinic had disappeared from the system, but Jaffer said subsequent information gathered at inner-city clinics in Johannesburg indicated that almost 50 percent of pre-treatment patients were lost at the point where blood was drawn to determine CD4 counts.

Researchers have been unable to determine why this should be so, but Jaffer suggested it could be due to long delays in receiving laboratory results, or patients not understanding the importance of knowing their results.

The RHRU has developed a do-it-yourself guide for clinics wishing to conduct similar audits on their own files, an exercise Jaffer said might strengthen weak monitoring and evaluation (M&E) systems.

"If monitoring systems are strong, people will be able to pick up these trends," she said. "Based on what we've seen, and just talking to people, M&E skills are very weak,' Jaffer said.

"There's a fear and reluctance to pass the numbers on to external agencies or even their own supervisors. People are very cautious - they think if you are asking for numbers it's because you want to expose something, which is not always the case, she said. "Some people don't have a proper understanding of why we collect data. They think of it as extra work beyond their normal capacity."

According to health department spokesperson Charity Bhengu, 408,218 patients were receiving ARVs from 366 health facilities nationwide as of November 2007. The department could not be reached for further comment on whether the RHRU's findings were indicative of a national trend.

South African AIDS activists have called on doctors and nurses to act in the best interests of HIV-positive pregnant women and their unborn children by not waiting any longer for an official directive to switch from single antiretroviral (ARV) treatment to more effective dual treatment for the prevention of mother-to-child HIV transmission (PMTCT).

At a meeting of the South African National AIDS Council in November 2007 South Africa’s Deputy President and the Director-General of Health announced that public health facilities would abandon the regimen of administering nevirapine only in favour of a short course of two antiretroviral (ARV) drugs for pregnant HIV-positive women.

Nearly two months later, the new PMTCT guidelines have yet to be published and disseminated to health workers at state facilities.

Dual therapy, which is currently only available in the public sector in South Africa's Western Cape Province, is more than twice as effective as monotherapy in lowering the risk of mother-to-child transmission, and has been recommended by the World Health Organisation since August 2006.

Speaking at a press conference convened on Wednesday by the AIDS lobby group, Treatment Action Campaign (TAC), Dr Tammy Meyers, a paediatrician, noted that HIV in children had been a preventable disease for over 10 years and despite having the resources and the expertise, South Africa had fallen behind its neighbours in rolling out dual therapy.

Frustration

Meyers said 90 new patients register every month the clinic for HIV-positive children she manages at the Chris Hani Baragwanath Hospital in Soweto, Johannesburg's largest township. "And those are the ones who are fortunate enough to be found," she added. "Most die without ever accessing treatment services."

While paediatric HIV has almost been eradicated in many countries of the world, the TAC estimates that 60,000 babies are infected with HIV every year in South Africa. Experts have blamed the high rates of infection not only on the failure to switch to dual therapy, but also on poor implementation of existing PMTCT services.

According to UNICEF figures from 2006, many pregnant women are still not tested for HIV and only 59 percent of women who test positive receive nevirapine.

The Southern African HIV Clinicians Society, which represents 14,000 members working in the HIV/AIDS field, also released a statement on Wednesday, urging the Ministry of Health to finalise its changes to the PMTCT regimen.

"In South Africa, a middle-income country where the majority of women give birth in state facilities, the fact that HIV-infected women have access to a substandard regimen for protection of their children is a sad reflection on our health system," read the statement.

The society said many health professionals and provincial health departments were frustrated at not having formal permission to implement an improved regimen. Nomfundo Eland, of the TAC, said some had decided to go ahead without permission. Her organisation was offering legal and other support to any health worker penalised by the state "for acting in the best interests of parents and children."

Just ahead of the press conference, the health department announced that the National Health Council would meet on Friday to "endorse" new PMTCT guidelines.

AIDS activists have blamed the delay in adopting an improved PMTCT regimen on lack of leadership from Health Minister Manto Tshabalala-Msimang, but health department spokesperson Sibane Mngadi told a local media outlet that costing the changes had caused the delay.

The TAC acknowledged the health department's announcement but refused to comment on it until they had seen the new protocol. However, Mngadi confirmed that the new guidelines would not include a "tail" regimen of two drugs administered to HIV-positive women for a week after giving birth, to reduce the likelihood of future ARV drug resistance.

"A consultative group made strong recommendation for a 'tail' regimen," Meyers told IRIN/PlusNews. "I don't know why it's been dropped."

Linda Mbiko*, a 36-year-old widow, crossed the border from Zimbabwe into South Africa, hidden in the back of a truck. She was fleeing poverty and a public health system that had failed to help her HIV-positive daughter. In Johannesburg, she believed she could earn enough money to send some home and find treatment for herself and her child, but without documentation she found the city a hostile place.

“After my husband passed away, I had no one to rely on, I had no food. When he was working, that little money was something to us. I was staying in rural areas and the life there was not easy; I had two kids to take care of and I did not even have parents. Sometimes, I had to sleep without food because I had no money and even if I had a little money, it was not easy to get food because there was no food in the shops.

"Otherwise I was sick all the time and my child was ill as well, but I was not sure what it was and it was difficult because if you do not have money, you are not going to get anything. Only those people who have a lot of money get treatment.

“In the clinic, they decided to test my child and she was positive. I was afraid I was as well, but I did not want to believe it. There was no treatment so I used to get medicine from a tree, which we call Muringa, the leaves of this tree - if you make it into powder and put it in porridge people say it helps. That was what we were depending on.

“When I came to South Africa, I was hoping to get a job and take care of my children, especially this one who is sick of the deadly disease. I was also hoping to find something which was going to make me last longer because I was sick. I was thinking, I’ll go to Johannesburg, because it is a place of gold. But it is not easy to get that gold even if you dig and dig you will not get it.

“It was different from what I was expecting. I was hoping for a job, a better life, better accommodation, but when I came here it was not easy. I had to spend most of my time in the park. You stay in the park because you have nowhere to go and sleep.

“One day I met a man who offered to help me, but he used me for sex at the end of the day. Sometimes he locked me in his room, so I stayed for a week and then I escaped and was back on the streets.

“I got sick and I went to the clinic in Braamfontein [an area in Johannesburg’s inner city] to be tested. I had to wait for two weeks to get the results and I did not get counselling. The nurse who gave me the results told me, ‘Here are your results; you are HIV positive, you can go and die. You do not have papers, we can not help you.’

“Some other patients told me about a shelter and at the shelter I heard about the support group. They referred me to Nazareth House [a Catholic mission in Johannesburg’s inner-city] where I got counselling and ARVs (antiretrovirals) and they never asked about papers.

“I’m still staying at the shelter, still not working. I don’t have much contact with my family because they live in rural areas; I don’t know how they’re surviving.

“The support group has helped a lot, just to unload and give each other advice. Most are from Zimbabwe and have similar experiences.”

Over a five-year period, Indonesian Heldina Irayanti, 28, was in and out of drug rehabilitation clinics more times than she can remember. But there is one particular stay she recalls vividly: it was 2002 and her HIV test had just come back positive.

"That was when I finally stopped using drugs," she told IRIN/PlusNews.

After her initial shock she decided to tell her family, friends and her then boyfriend - now her husband - Yulius Adam, also a former intravenous drug user, who was diagnosed HIV positive before Heldina.

Little did she know the prejudice she would encounter as a woman, a Muslim and being HIV positive. The discrimination began in her own family. "Adam's family blamed me for having transmitted the virus to him, even though at the time he was diagnosed my test came back negative." She believes that HIV-positive Muslim women experience more prejudice than men in similar circumstances.

Different weights, different measures

Discrimination was the common denominator of all the stories told by HIV-positive Muslim women who participated in the International Conference on Islam and HIV/AIDS, held in late November in Johannesburg, South Africa.

"Women are still regarded as secondary creatures," said Zahra-Tul Fatima, a director at the Asian Muslim Action Network (AMAN), Pakistan Foundation, which focuses on poverty eradication.

Hany El-Banna, president of Islamic Relief Worldwide, the non-governmental organisation which organised the conference, said the tenuous link between culture and religion was what fed this system of "different weights, different measures".

"The Koran preaches equal compensation for equal work and the forgiveness of sins," he said. "The gender difference mentality is wrong, but in some countries culture is stronger than religion."

El-Banna cited the example of the honour killings, practiced in a number of Middle Eastern countries, in which a young woman who has had sexual relations prior to marriage was murdered to preserve her family's honour. "But why don't they kill the man too? There needs to be equilibrium and justice," he commented.

Sindile Ngubane, of Al-Ansaar Refugee Service, based in the port city of Durban, South Africa, agreed. "If a teenage girl gets pregnant, she will probably be recriminated and rejected," he said. "But if a boy gets a girl pregnant, no one says anything. They'll probably say that he was the victim of an evil woman."

Sinners and outcasts

Riana Jacobs, the first Muslim woman to go public about her HIV-positive status in South Africa three years ago, said the higher level of prejudice against women was partly because more women than men were open about their condition. "They'd rather keep the issue a secret," said Jacobs, who was diagnosed in 2000.

Another reason is that HIV is commonly associated with illicit sex, but discrimination is a constant, even when infection takes place in other ways.

Sabrina Salim, 37, with three children, was infected by a blood transfusion in Tanzania, her native country. She only discovered she was HIV-positive when she took the test required by the Canadian government for an immigrant visa.

The prejudice followed her all the way to Toronto, where she now lives. She revealed her condition to a friend, who started a wave of rumours that Salim was HIV-positive, giving her dubious reputation in the local African community. "The women would call each other and say, 'Careful with your husband, there's a loose woman among us'," she said.

Women have rights

Lina Al-Homri, a doctor of Sharia (Muslim religious law) in the Faculty of Dawa (Muslim missionary work) in Damascus, Syria, said only education could reduce the vulnerability to stigma of Islamic women when it came to HIV.

"The right to education is violated all the time, but education doesn't depend on one's sex," she told a perplexed male audience. "We have to give women the right that Allah gave them to be educated and to express themselves."

She said HIV prevention among Muslim women was directly linked to women's rights, such as being able to choose their own husbands, ask for divorce, ask their partners to be tested, refuse sex with their husbands, demand that their husbands use condoms, and be separated from HIV-positive husbands.

Fatima, of AMAN, suggested practical measures. "There needs to be more places for [HIV] tests, with confidentiality and a support mechanism. And, mainly, more power and autonomy must be given to Muslim women," she said.

Despite the difficulties, some women have chosen to pay the high price of going public. The decision made by Indonesia's Irayanti even had repercussions for her son, Bilal, 3, when the fearful parents of his classmates took them out of school. Bilal, who is HIV negative, was also taken out of school, but returned after his mother explained the situation.

As an HIV-positive Muslim, Irayanti believes she has a responsibility to get people to confront HIV/AIDS. "We have to face up to it," she said. "It's time to talk about HIV and AIDS; if we don't, nothing will change."

In her bright orange clothing, South African Riana Jacobs, 31, stands out from the crowd at the recent International Consultation on Islam and HIV/AIDS, organised by the charity, Islamic Relief Worldwide (IRW), in Johannesburg, South Africa.

She has been HIV-positive for the last 10 years and is not intimidated by the audience of Muslim religious and academic leaders, mostly men. When she declared her status in 2004, compassion from her religious leaders was hard to come by.

"People accept it when it's not their problem," she said. "But leaders don't want to see that seroprevalence is increasing among Muslims."

This picture of intolerance is slowly changing as more initiatives throughout the world educate imams - Muslim religious leaders - about HIV and AIDS, so that they can teach their congregations.

"The imams are more effective than television or the radio in certain areas because of their authority and influence ... imagine the impact if all imams dedicate time in their sermons to talk about HIV," remarked IRW president Dr Hany El Bana at last week's meeting.

According to UNAIDS, although prevalence in Islamic communities is relatively low, it is growing in countries like Algeria, Iran, Libya and Morocco.

In Mozambique, where a quarter of the population is Muslim, 19.8 percent of the adult population is living with the virus; in Guinea Bissau, where 4 in 10 of the country's 1.4 million inhabitants follow the Islamic religion, the national seroprevalence rate is 3.8 percent.

Data from the National AIDS Commission in Indonesia - the world's most populous Islamic country, with 225 million inhabitants - show that HIV cases have been reported in almost all its 33 provinces, mainly among intravenous drugs users.

Allah Yar Qadri, once an imam and now a consultant on community development, HIV/AIDS and Islamic issues in Malawi, warned that imams could not afford to distance themselves from the issue. "If the imams remain silent, others will take the lead and speak to our communities, but far from Islamic principles."

Do female condoms exist?

In Muslim communities, HIV has been associated with infidelity or promiscuous behaviour, so many people have viewed infection as a well-deserved divine punishment, but this perception is slowly being replaced by a more tolerant attitude.

An effective change in mentality would require not only education about the pandemic, but also more information on sex and risky behaviour, which scholars do not always have. "I'm sorry, but do female condoms exist?" asked Amna Nosseir, a specialist in Islamic philosophy who hosts a television programme in Egypt.

To a certain extent the lack of knowledge can be traced back to the madrassas (Islamic schools), which are reluctant to deal with more current themes. "The curriculum in the madrassas needs to be revised," Qadri said. "Islam is a religion in progress, so it's necessary to incorporate contemporary aspects into curricula, and sex is an important chapter of the Quran."

Economic factors also matter. In Malawi, for example, many imams are contracted by a committee of community businessmen, so they may not always be able to preach about what they see as most pertinent. "If the imam talks about HIV and AIDS without the committee's approval, the next day he could lose his job," Qadri explained.

Back to school

Some Islamic countries are solving the problem by educating imams about HIV/AIDS. Sheikh Mohamed Bashir Joaque, who was born in Sierra Leone and lives in the United Kingdom, is part of the African Muslim Communities Campaigns Against HIV/AIDS initiative, and the growing success of his courses in London have led to the creation of a manual on HIV/AIDS for religious leaders.

He says the secret is to transmit information gradually, from an Islamic perspective. "We need to adapt. We don't start talking about condoms right from the beginning. We emphasise that the best thing is still abstinence before marriage and faithfulness during marriage," he explained.

"But we also say that we're all human and can all have moral lapses, and if this happens, condoms should be used. If we're too direct, they leave."

To most Westerners, a fatwa, or Islamic ruling, evokes the imposition of a death sentence on author Salman Rushdie and the wearing of head-to-toe coverings, or burkas, on women.

Yet fatwas can also be progressive and bring widespread change. Issued by respected Islamic scholars known as ulama, fatwas are guidelines for the ummah, the worldwide Muslim community, which numbers between 1.3 and 1.5 billion people, according to the CIA Factbook.

The draft text of several progressive fatwas were discussed last week by the ulama at the International Consultation on Islam and HIV/AIDS, organised by the charity, Islamic Relief Worldwide (IRW), in Johannesburg, South Africa.

One fatwa would approve the use of funds from the zakat (mandatory alms giving) for HIV-positive people, whether Muslims or non-Muslim, regardless of how they contracted the virus, as long as they are poor.

Another fatwa would approve the use of condoms by married discordant couples, where one is HIV-positive and the other is not, to avoid infection.

The findings are not final. As first-opinions, they will be discussed next year at regional and national consultations.

"These are two [potentially] revolutionary rulings here," said Dr Ashgar Ali Engineer, chairman of the Centre for Study of Society and Secularism, in Mumbai, India.

The use of condoms has long been a divisive issue in the Islamic response to AIDS. Muslim teachings condemn sex before or outside marriage, and reject condoms for both safer sex and family planning.

Yet the views on condoms were not unanimous: "A condom is a necessity sometimes," said Bangladeshi sheik Abul kalam Azad. "The enemy of my enemy is my friend. HIV is an enemy. The condom is the enemy of HIV. If we can save lives with a condom, let discordant couples use it."

Impact on the ground

For charities like IRW, if these opinions become rulings, "we can formulate programmes based on this advice", said Makki Abdelnabi Mohamed Hamid, a Sudanese agriculturalist and head of the Africa region at IRW.

On the ground, the fatwas might smooth operations. "If we are working, say, in Somalia, we can show these fatwas and not be obstructed by local religious leaders," added Hamid.

Zakat, mandated at two percent of an individual's accumulated wealth above a certain threshold, mobilises large amounts of money that could go towards HIV and AIDS work. "People and institutions may now feel comfortable giving money for HIV and AIDS," said Hamid.

So far, the Muslim response to the pandemic has been dogged by "the prejudiced association of the disease with moral depravity", said Dr Asghar Ali Engineer, because the virus is transmitted, among other ways, through illicit sex and injecting drug use, which reinforced its link to sinful behaviour.

Muslims accord great importance to the Islamic holy book, the Qu´ran, and its explanatory notes, the hadith. "AIDS and condoms did not exist at that time. We are faced with new challenges and we need new fatwas to deal with new issues," said Hamid.

The unworldliness of many scholars compounds the problem. "Some religious leaders are not exposed to the real world. We, humanitarian workers, we listen to people's stories," Hamid added.

Being informed about HIV and AIDS also helps. "A human being is an enemy of what he does not know. We need scholars to understand all aspects of HIV and AIDS and try to find suitable rulings," said Lina Al-Homri, a doctor of Sharia (Muslim religious law) in the Faculty of Dawa (Muslim missionary work) in Damascus, Syria, and one of two woman scholars who helped draft the fatwas.

Dr Ikram Bux, a South African physician and HIV/AIDS specialist working in the east-coast city of Durban, shared his view. "On HIV-related fatwas, the ulama should have advisers who are experts on the epidemic," he told IRIN/PlusNews.

Linking science and religion was the keystone of Senegal's response to AIDS, praised as a model by UNAIDS. As early as 1987, when African governments, with the exception of Uganda, were silent about the disease, Senegalese scientists, epidemiologists and health authorities - all Muslim - met with the traditional Islamic leadership to explain the new disease from a scientific, not moral, perspective.

As a result, imams across the West African nation of 12 million were mobilised to send clear messages on prevention and transmission 20 years ago. Today, many Muslim countries and communities have well-established and creative programmes to deal with the pandemic, ranging from assistance for intravenous drug users in Iran and Indonesia to family planning in Afghanistan and street children in Zambia.

Calle Almedal, a senior consultant to UNAIDS and a specialist on community responses to AIDS, was impressed by the variety and quality of work presented at the consultation.

"Muslim NGOs [non-governmental organisations] have low visibility yet they are doing extraordinary work. Like Christian groups 20 years ago, they are too busy working to attend international conferences and brag about it," he told IRIN/PlusNews.

Suhail AbualSameed looked calm, yet he was shaking inside. He was seated before a row of ulama, distinguished Islamic scholars, from Afghanistan to Yemen at the International Consultation on Islam and HIV/AIDS, organised by the charity, Islamic Relief Worldwide (IRW), in Johannesburg, South Africa, last week.

The previous day, several of them had denounced homosexuality as un-Islamic and evil. Today, AbualSameed had something to tell them. "As a gay Muslim, I feel unsafe, unloved and unrespected in this space," he said. "Were I to become HIV-positive, the first thing I would lose is my Muslim community. I couldn't come to you guys for support."

You could cut the tension the room with a knife. AbualSameed continued: "I wish you did not refer to gays with the (Arabic) words 'shaz' and 'luti' - perverts and rapists - because we are not." Two men in keffiyas, the gingham headcloth worn by men in many Muslim countries, waved their arms to silence him but the chairman nodded for him to continue.

Spellbound, the audience listened as AbualSameed, a Jordanian living in Canada, did the unthinkable: outing himself.

The groundbreaking consultation brought together Muslim community leaders, academics, doctors, relief workers and HIV-positive activists to rethink the Islamic response to HIV and AIDS. One key issue was HIV prevention among hard-to-reach vulnerable groups like sex workers, street children, injecting drug users, and men who have sex with men.

Jaffer Inamdar, the HIV-positive founder and programme manager of the Positive Lives Foundation in Goa, India, told IRIN/PlusNews: "Lots of sex, drugs and gay activity take place during the high season from September to April in this popular tourist destination. Harsh, condemning language make them [gays] run away, hide and continue to spread HIV."

Anti-gay laws

Homosexuality is forbidden and considered a crime in most Islamic countries. Six officially Islamic countries (Iran, Mauritania, Saudi Arabia, United Arab Emirates, Yemen, and the 12 northern states of Nigeria) invoke sharia - Islamic religious law - and maintain the death penalty for consensual same-sex sex, according to human rights watchdog Amnesty International.

Other countries punish homosexuality with fines, jail or lashes, coupled with social stigma and blaming Western culture for introducing gay lifestyles.

Not surprisingly, AbualSameed was fearful: "I saw their gaze, their body attitude, and my memory told me there could be a physical reaction." But he had nothing to fear. "Afterwards, veiled women, bearded men, the most religious types, came to me and apologised if they had said something offensive, if they had made me feel unloved or unsafe."

Each friendly gesture signalled belonging. "This is us: our culture is intimate, warm, based on relationships. When I outed to my family, they did not turn on me," a relieved AbualSameed told IRIN/PlusNews.

The following morning, the ulama had a surprise. Conference spokesperson and IRW head of policy Willem van Eekelen read their collective statement, saying that although Islam does not accept homosexuality, Islamic leaders would try to help create an environment in which gay people could approach social workers and find help against AIDS without feeling unsafe.

"This first time ever that a high-level religious forum has talked, acknowledged and accepted gays," said AbualSameed. "This will open the door to talks with the Muslim gay community and help other gay Muslims to come out in a safer space."

To see theologians from Egyptian and Syrian universities, and imams - Muslim community leaders - from India, Sudan and Pakistan defy official Islamic homophobia is "definitively a first", said sheikh Abul Kalam Azad, chairman of the Masjid (mosque) Council for Community Advancement, in Bangladesh. "Homosexuality is a sin but we should not be cruel. They [gays] suffer a lot in the Muslim world."

Inamdar welcomed the statement. "There are many gays in my group [in Goa]. Islam says it is a sin and we have to follow Islamic rulings, but we are all human and deserve respect."

An unlikely ally for gay rights turned out to be Sudanese sheikh Mohamed Hashim Alhakim, dressed in a white robe with gold trimmings and a white turban, and his wife, clad in a black hijab, with their baby just behind him. Alkahim runs the S-Smart Training and Consultancy Centre in Khartoum, which also runs AIDS awareness programmes.

"I used to be very hard against homosexuals and sex workers," he said. "But I learned to respect their humanity. I advise them to change, but if they are going to continue they must practice safe sex so they don't harm themselves and their partners."

Evil ways

During the weeklong consultation, AbualSameed, who is coordinator of the Newcomer/Immigrant Youth Programme at the Sherbourne Health Centre in Toronto, had endured homophobic statements. Just the day before, one scholar had ranked homosexuality with bestiality and adultery as evils to avoid.

"The harshness of the comments made me passionate; I had to do something for my own identity and dignity, and of other gay Muslims," said AbualSameed. His decision to speak out was nurtured in his conference working group, made up of Muslims from Iran, Kenya, South Africa and Tanzania.

South African psychologist Sabra Desai spoke about care and solidarity, and recalled the Prophet's words: "'If one part of my body hurts, my whole body hurts'," she said. "I take this to mean that if one member of my community hurts, we all hurt."
 
Then she squeezed AbualSameed’s hand under the table and passed him the microphone.

Slowly, he started: "As a Gay Muslim…" And with every word, the doors of tolerance opened wider.