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.”

Rural women living with HIV in circumstances of poverty in South Africa face discrimination in relationships and in communities because of their gender, HIV status and economic marginalization.
 
A new Amnesty International report based on interviews with rural women, the majority of them living with HIV, exposes the overwhelming challenges they face in the midst of the severe HIV epidemic affecting the country.
 
"Rural women in South Africa are disproportionately affected by poverty and unemployment," said Mary Rayner, Amnesty International's South Africa researcher.
 
"They continue to experience discriminatory attitudes and practices -- particularly from male partners – and live in an environment rife with high levels of sexual and other gender-based violence."
 
Despite gradual improvements in the government's response to the HIV epidemic and the adoption of a widely-welcomed five-year plan, five and a half million South Africans are HIV-infected – one of the highest numbers in any country in the world. Fifty-five percent of them are women. South African women under 25 are between three and four times more likely to be HIV-infected than men in the same age group.
 
Many women interviewed by Amnesty International said that they were often unable to protect themselves against HIV infection because they felt at risk of violence when they suggested condom use.
 
One woman told Amnesty International that her husband, a truck driver, spent much of his time on the road. On his days off, he would visit her, but he refused to use condoms when she asked him. After he abandoned the family, she became sick and discovered at the local clinic that she was infected with HIV. She has no knowledge of her husband's health since he left the family.
 
Several other women interviewed by Amnesty International described being beaten and forced to have sex by husbands who actively refused to use condoms.
 
"Rural South African women's lives are scarred by persistent violence in their families, homes and in under-policed, unsafe communities," said Michelle Kagari, Deputy Director of AI's Africa Programme.
"The co-existence of epidemics of both HIV and violence against women has raised the costs of violence for South African women and girls – both physically and psychologically," said Kagari.
 
The majority of rural women interviewed by Amnesty International said that their male partners were reluctant to test for HIV or refused to be tested -- even when there were strong indications they might be HIV-infected. Many of the women faced abuse from their partners when they tried to access health services for HIV-related treatment and care.

Effective treatment for HIV and AIDS requires regular visits to hospitals and clinics and adequate daily food with which to take medication. Rural women living with HIV in poverty and unemployment face constant challenges in having regular access to food and often cannot afford transportation to health facilities accredited to provide treatment.
 
"Lack of physical access to treatment centres is tantamount to a denial of access to health care services, and the government must take more responsibility in ensuring this access," said Michelle Kagari.
 
Amnesty International's report offers specific recommendations to national and provincial authorities on how to tackle the challenges facing rural women living with HIV. It also makes recommendations to donor countries and institutions that support health initiatives in South Africa.

As developing countries scale up their antiretroviral (ARV) treatment programmes, more and more people living with HIV are expected to develop resistance to their drug regimens and will need second-line medicines.

Many second-line drugs are either unavailable or prohibitively expensive in developing countries, and doctors often lack experience or knowledge of what combination of second-line ARVs to prescribe.

In a move aimed at helping governments formulate second-line treatment regimens, fast-track drug approvals and drive down prices, the World Health Organisation (WHO) has narrowed down the number of second-line ARVs it recommends.

The new guidelines, drawn from an expert meeting held in May 2007, have been released partly in response to requests from countries for more guidance on which second-line ARVs to include in their national treatment programmes.

Clearer guidance

"These new guidelines are good news," said Dr Tido von Schoen-Anderer, director of Campaign for Access to Essential Medicines run by Medecins Sans Frontiers. "Before there were so many different drug options and now there is much clearer guidance, and that has major advantages at the programme level and also the choice of drugs means it's going to be cheaper."

Of the two million HIV-positive people in low- and middle-income countries receiving treatment by December 2006, the WHO estimates that only about two percent were on second-line ARVs, but that number is rising because about three percent of ARV patients switch from first- to second-line treatment every year.

Second-line drugs can cost between two and nine times as much as fist-line drugs and few generic versions are available. The WHO has estimated that without price reductions, by 2012 as much as 90 percent of the funds for providing ARV treatment will be spent on second-line drugs.

According to the Clinton Foundation HIV/AIDS Initiative (CHAI), the prices of a number of generic second-line drugs in the pipeline or awaiting regulatory approval will depend on limiting the number of different drugs used for second-line treatment.

"Second-line access is still a challenge," said Andy Gray a consultant pharmacist for the Centre for the AIDS Programme of Research in South Africa (CAPRISA). He pointed out that South Africa, a middle-income country with much greater regulatory capacity than other countries in the region, still lacked a generic version of a second-line protease inhibitor, a class of ARV drugs that is a component of most adult regimens.

Gray welcomed the WHO's additional guidelines on second-line treatment, but worried that the choices might be too restrictive. "Limiting the number of second-line options may look attractive to a country programme, but in a middle-income country such as South Africa there's going to be a lot of pressure from clinicians that they need more options," he told IRIN/PlusNews.

"If countries like South Africa have enough well-trained clinicians, then of course they can offer more options," Von Schoen-Anderer responded, "but in terms of making second-line treatment more available, the only way forward was to make it simpler and easier to implement."
Second-line ARVs still too expensive

Gray and Von Schoen-Anderer agreed that many obstacles remained to making second-line drugs more cheaply available. "I don't think governments are doing enough to prepare for the numbers of people who are going to need second-line treatment," Gray said.

Few governments, for example, have so far taken advantage of safeguards provided in the World Trade Organisation's Trade Related Aspects of Intellectual Property Rights (TRIPS), which allow intellectual property rights to be balanced against public health priorities.

Under TRIPS, countries can override drug patents during a public health emergency by issuing a 'compulsory license' to manufacture or import cheaper generic versions, a move Von Schoen-Anderer predicted might be necessary, especially if pharmaceutical companies were successful in challenging an Indian law that allows the country to block patents for medicines that are modified versions of existing drugs.

"There's enormous dependence on generics from India so we look with a lot of concern now to what is going to happen there with the patents," said Von Schoen-Anderer.

The new WHO guidelines draw attention to an additional barrier to effective second-line treatment: the lack of capacity in many developing countries to carry out tests that diagnose first-line ARV treatment failure.

"In order to maximise the efficacy and durability of first- and second-line antiretroviral regimens," read the guidelines, "WHO continues to support the universal availability and use of appropriate and affordable CD4 [an indication of immune strength] and HIV viral-load testing."

In the absence of equipment to measure viral load [the amount of HI virus in the system], health workers have to rely on physical signs that the disease is progressing in spite of treatment. As a result, drug resistance is often quite advanced before its detected.

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."

The long wait is over. South Africa's HIV-positive pregnant women will now have access to medication that could further reduce the risk of passing the virus to their babies after the health department released guidelines for administering more effective dual therapy instead of single antiretroviral (ARV) treatment.

After  growing pressure from frustrated activists, the Policy Committee of the National Health Council held a special meeting on 25 January 2008 to adopt the new guidelines, which include providing pregnant HIV-positive women with zidovudine, also known as AZT, from their 28th week until labour, and a single dose of nevirapine during labour. The infant receives a single dose of nevirapine, and then AZT for seven days.

Earlier that week, the AIDS lobby group, Treatment Action Campaign (TAC), and the Southern African HIV Clinicians Society, which represents 14,000 members working in the HIV/AIDS field, called on the health ministry to finalise its changes to the new regimen to give infants greater protection.

"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," TAC said in a statement.

The World Health Organisation guidelines for the prevention of mother-to-child transmission (PMTCT) of HIV advise using a combination of ARVs, which can reduce the risk of transmission to as little as five percent.

The challenge now is to make sure that healthcare workers at public health facilities receive the guidelines and the medicines so that new mothers and babies will benefit as soon as possible.

New treatment "not rocket science"

Prof Glenda Gray, co-director of the Perinatal HIV Research Unit at the University of Witwatersrand in Johannesburg, admitted that while urban areas with adequate infrastructure would have no difficulty in implementing the new directive, rural areas could find it problematic.

"Obviously the more rural areas, where there are less doctors and human resources, and where there will be issues of drug procurement, will struggle ... but it doesn't mean it can't happen." Despite the challenges, the new regimen was "not rocket science", and "where there's a will there's a way", she told IRIN/PlusNews.

The government said in a statement that infant feeding "remains a challenging area". The guidelines acknowledge that there is still lack of conclusive scientific information to guide policy formulation in this area, and encourage a choice of six months of exclusively breast feeding or infant formula feeding for six months.

"Until breast-feeding is HIV free ... [and] there's no risk of HIV transmission, there's going to have to be a choice. You can't commit mothers to breastfeed when there are other options, and you can't expect poor mothers to formula-feed ... we should be giving them a choice," Gray suggested.

Formula feeding carries the lowest risk of transmission, but only if mothers have access to clean water, electricity and an uninterrupted supply of formula milk; without these, breast-feeding is usually the safer option.

Implementing the guidelines will require increasing the 2008/09 budget for PMTCT from R85 million (US$11.8 million) to R281 million ($39 million), and the health department will be asking the Treasury for additional funds for the programme.

The PMTCT programme would also have to strengthen its system for recording patients, ensure adequate access to laboratory services, and provide uninterrupted supplies of drugs, formula and other nutritional support, the health department said in a statement.

Department of health spokeswoman Charity Bhengu told IRIN/PlusNews that the guidelines were undergoing final editing and would be posted on the
department's website later this week.

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."