Everyone is affected

It is hard to overestimate the effect of HIV/Aids on the developing world. Many countries in sub-Saharan Africa have seen their life expectancy rates plummet, and according to statistics from the World Health Organisation (WHO), more than 40.3 million people are thought to be living with the disease worldwide.

While the WHO reports that from 2003 to 2005 the steepest increases in HIV infections have occurred in Eastern Europe and Central Asia (25% increase to 1.6 million) and East Asia, sub-Saharan Africa continues to be the most affected globally: 64% of new infections occur there. More than 3 million people died of Aids-related illnesses in 2005; 500,000 of them children.

Arguably it is children who are suffering the most as a result of the pandemic. "Aids is redefining the very meaning of childhood for millions, depriving children of many of their human rights, of the care, love and affection of their parents, of their teachers and other role models," says Sarah Epstein, spokesperson for Unicef in London.

The reality is harsh: children who lose their parents are more likely to be ill themselves; they are less likely to go to school, especially the girls, because they are caring for younger siblings, because there is no money for school fees and they often need to work in order to eat. Older children may abuse alcohol or become involved in the sex industry.

Children are often taken care of by their extended families - particularly their grandparents - but this cannot extend indefinitely. There are simply too many orphans whose parents have died from Aids. They may also suffer while their parents are still alive: families often experience prolonged periods where the parents cannot work, any family savings are quickly spent, and the children soon go hungry.

Breda Gahan, Global HIV&Aids programme adviser at Concern Worldwide, says: "I look around at the frightened children who do not understand why they are being robbed of their parents ... we must accelerate our response in 2006, and for as long as it takes."

Moreover, children are not only losing their families but also their teachers and thus often miss out on education. And as it is often at school that children learn about HIV prevention, so keeping children in school has a significant impact on keeping the virus under control.

"More than two decades into the pandemic, surveys have established that the majority of young people still have a limited understanding of how HIV is transmitted or how to protect themselves. In almost all of the 34 countries in sub-Saharan Africa recently surveyed, fewer than half of young women aged 15-24 were aware of critical prevention and transmission methods," according to Epstein.

But the education system in many countries is under threat. "Even when the teachers themselves may not be ill, they often have to miss work as they are looking after sick relatives. Their morale often falls as colleagues are lost to Aids. Often rural areas are most critically affected," she says.

Medical professionals have been hit too: UNAids estimates that death rates among health workers in the most highly affected countries in Africa "have increased five- or six-fold as a result of Aids-related illness".

In sub-Saharan Africa, many doctors and nurses, faced with low pay and poor working conditions, are also seeking jobs in western countries. The WHO estimates that the shortage of health workers has reached 1 million and an additional 20,000 health workers are lost each year because of emigration.

As a consequence, many hospitals are being overwhelmed with caring for Aids-affected patients. This then makes it more difficult for health workers to care for people with other life-threatening illnesses such as pneumonia, diarrhoea and malaria.

Dr Andrew Ball, senior strategy and operations adviser in the department of HIV/Aids at the WHO in Geneva, explains: "A lot more needs to be done to build the capacity of health systems in developing countries so that quality, safe and sustainable anti-retroviral treatment is accessible to the poorest. Nutritional support is also very important and many would convincingly argue that food is the first medicine."

Psychological care is also needed, but is rarely accessible and indeed seems until recently to have been left out of discussions on the pandemic. Stress and trauma associated with HIV operates on both an individual and societal level: people diagnosed with HIV and their families may feel grief, depression, hopelessness, anger, shock and betrayal. While peer counsellors can and do support indivuals with HIV, other psychological help may not be forthcoming.

Yet perhaps the most long-lasting effect of the pandemic will be economic. As well as individuals and families having to cope with the impact of losing the family wage-earner, or agricultural worker, whole societies have to cope with their most economically productive generations being sick and dying. The ramifications are immense. As the Unicef report Africa's Orphaned Generations states, the epidemic is "jeopardising ... the overall development prospects of [sub-Saharan Africa]".

Action can and must be taken, by governments, NGOs, community groups and individuals. "HIV hurts people, mothers, fathers, children, brothers, sisters, surviving grandparents, neighbours, friends and work colleagues. HIV/Aids hurts people everywhere, especially the poorest, and we need to do a lot more, a lot better and a lot faster if we are to save lives," says Gahan.

"Anything that can be done to relieve pain and suffering and extend the quality of life is essential. But we have to remain optimistic that HIV/Aids can be beaten. It can be if we address the root causes of poverty, inequality and injustice, and break the silence of denial, stigma and discrimination."

Caring grandparents: Zambia

Nyambe Mwitumwa, 67, didn't expect to be up to her waist in muddy water, draining part of the local flood plain, at her age. It's an annual event that takes local farmers in Mongu, western Zambia, a month of arduous work to do. The alternative is that the surrounding land would be infertile. In the past, it was the local people in the prime of their lives who got stuck in. This year, because so many local people have died of, or are sick with, Aids, there are as many 60 and 70 year-olds as there are burly men in their 20s.

Nyambe has lost her husband and four children to Aids. "I am all alone, so I have to grow crops like maize, rice and vegetables to survive," she says. "Unless I help to make the land fertile, I won't be able to do that."

The experience is shattering, she says. "I really feel very tired afterwards. I also have so many thoughts about the people who have died while I am doing the work. These people should have been here, and they are not. Aids has destroyed my family and eaten into my livelihood."

When her family was ill, there were days when Nyambe wondered if she would survive. "I had to care for them, so I couldn't grow food myself. Everything was suspended and it was difficult to cope. I'm now trying to rebuild my life, but I worry about the future. All I can do is try to get by on the little I can grow."

Namubebo Mulumo, 69, is working equally hard to drain the water. Although there are eight members of her family, only her and her daughter are here today. She says the others are either at school or are sick. "It definitely affects my health to do this work, but I have no option," she says.

Working with positive people: India

T Ramanjulu, 32, is a state support officer for the Indian Network for People Living with HIV/Aids (INP+). The work of Ramanjulu, who is known as Jinu, would not rank as desirable employment among most people in Orissa. He travels the length of the state to strengthen and build the network of people living with HIV/Aids. Visiting organisations for migrant labourers, truckers, sex workers; going to ante-natal and blood-testing centres and giving workshops to teach the facts about the virus has shown Jinu that people with HIV/Aids in Orissa live in fear.

His colleagues are positive people, whom he supports in their role as peer counsellors and outreach workers for INP+ in four of the state districts.

"In the villages, stigma is very strong," he says. "The problem is that positive people are not coming out in the open because there's no proper treatment available and confidentiality is not kept by medical staff. They say, 'This is your plight. You got this because of your misbehaviour.' Once people know about their status they often become depressed. In many cases their family don't support them. They hate them even. So in the support group we provide information to try and reassure them."

Working with marginalised people is not new to Jinu. He has spent 10 years as a community worker, supporting alcoholics, illiterate adults and child labourers in Orissa. But he wanted to work with people who have HIV/Aids because he considers them to be the most vulnerable. This realisation was prompted by the death of a young family friend from the virus. "I took him to the hospital where he died. I realised I didn't have a clue what to do to help him. I felt if I'd known what to do, he wouldn't have died."

From a poor village in the south of Orissa, Jinu has experienced first hand the stigma surrounding the virus. "My mother is illiterate. My family told me you should not work with these people because you will get infected. I had to explain to them how the virus was transmitted. My friends were constantly asking me if I was positive." His wife too was afraid that Jinu would contract HIV and infect their baby son. "I explained to her how it's passed on and that that wouldn't happen. Now she's got the facts."

Much needs to be done to improve care and support for positive people in Orissa, Jinu says. INP+ plans to expand its work to 10 districts across the state. But most pressing is the need for an ART centre. "Wealthier people can get the drugs through private doctors and agencies and don't have to face discrimination from state doctors. If you're rich, you can go some way to buy your way out of stigma."

The widow: Kenya

Sitting on the lower section of a sturdy bunk-bed with her bandaged leg propped up on a pile of blankets, Teresia doesn't look like the kind of person I was expecting to meet in a women's refuge. She's dressed in a well-cut, embroidered beige suit, and wears a string of wooden beads around her neck.

Teresia has just arrived from hospital, where she has been treated for a weeping leg ulcer. She and her three children live in a one-roomed shack in Kiambiu, a slum area of Nairobi, where three-quartes of the population are women. Many make a living illegally brewing chang'aa, known locally as "kill-me-quick" because of its potentially lethal properties.

"My husband discovered he was HIV positive in 2001," says Teresia. "When he found out, he was alone in Nairobi's Kenyatta Hospital. He threw himself off the top floor."

After her husband's death, his parents told Teresia she had put a curse on their son and evicted her from the family home on the day of his funeral. Kiambiu was the one place she could afford to live.

Teresia heard about Kenwa - the Kenya Network of Women Living with Aids - when her landlord discovered she was HIV positive. He threatened to throw her and the children out of their home. "To begin with, when I found out I was positive, Kenwa just helped me get through the day. I knew my husband had HIV, but I was still in shock. I couldn't look at myself in a mirror. I thought everyone would run from me."

She says she's mostly kept well. It was only when her leg ulcer started playing up, that she started to fall behind with her rent payments. When Kenwa tried initially to take her to hospital, the landlord refused to let her out of the house because she hadn't paid her rent for six months. Teresia is now staying at the Kenwa refuge until she gets stronger.

"Before my husband died, we had money. We lived well. When I started feeling better about my life, I began wearing my good clothes again." Teresia says, once she gets over her ulcer, she's determined to keep going. Kenwa has offered to give her vocational training to help her become financially independent.

"Life has not been easy," she says, "but being among people from Kenwa, where I can talk freely about my HIV status, and to be accepted, is a liberation."

Property-grabbing: Zambia

Irene Kasanga, 47, is no stranger to journalists visiting her home. Having featured in the award-winning documentary Living With Aids, made last year by Sorious Samura, she had a camera pointing at every gruelling task involved in caring for a husband dying of Aids in rural Africa.

Irene's husband, Felix, died one month after the documentary was completed, but the effects of Aids on her life did not stop there. Like many Zambian widows, she became a victim of "property-grabbing", whereby the dead husband's family claim the widow's home and land. "My husband's elder brother and sister took my belongings too," says Irene.

Thankfully, before Felix became ill, he built a small home on another plot of land organised through the local council, where Irene now lives with her four children and six grandchildren. "Our plan was to build a bigger house here and rent it out to get some income. But once he became ill, we had to sell the bricks - and many of our belongings - to pay for medical care," she says.

Incredibly, Irene bears no grudge against Felix's family. "It came as a shock when it happened and I couldn't go home to my family because they would have disapproved of my own HIV positive status. But I think the only reason it happened was because my husband's family were ignorant."

She is now well used to being the breadwinner. "In the past, it wasn't the job of women, but now there are so many widows, so it is not unusual."

This week, Irene has had the rare opportunity to do typing for the local water board. It takes her an hour and a half to walk each way, but she doesn't complain. "I am lucky to have got the work," she says, pointing out that normally she supports her family from what she grows on her own small cassava plot.

The friend and carer: Kenya

On the outside window ledge of Mary Auma's one-roomed shack, deep in the sprawl of Kiambiu slum, are three carefully tended pot plants. They are a striking sight in this environment of grey urban squalor, where open sewers meander slowly past people's front doors. Each morning groups of women queue to pay five Kenyan shillings for a jerry can of dirty tap water. Until recently, when Mary was still bed-ridden, even the act of boiling the liquid was too difficult.

At 9am, there is a knock on Mary's gate. Her visitor is Jane Gadhiaga, Mary's home-based carer, coming to see what kind of night her patient has had. Jane, who works as a volunteer for the Kenya Network of Women living with Aids, cleans and feeds Mary and makes sure she's taken her ARVs. If Mary has any problems, she chats through her worries before addressing any practical needs. Does she have enough paraffin for her lamp? Is she eating the right food?

With her husband dead, and her only surviving relatives living 10 hours' drive away, Mary, who is 51, is completely dependent on her carer's help. "When Jane first started coming, I was weak from TB and couldn't lift my head from my pillow. And I was very down. I'd been ill before but not so bad and I thought this was it for me."

Jane is also HIV positive and, three years ago, says she was also in a bad way. Her husband had died of Aids, she'd just lost her second child and she was ill with TB. "This was before I knew anything about ARVs and that HIV could be transmitted from a mother to her baby. But my medication has made me stronger and I can now use my own experience to encourage my patients." Sitting close together close, the women hold hands and giggle regularly.

"We're from different ethnic groups," says Mary. "Jane is a Kikuyu and I'm a Luo, but we understand each other. She's closer to me than anyone in my family. She's survived and that's what matters to me."



Earning a living: Haiti

Haiti is the poorest country in the western hemisphere, and across the country, over 3% of the population are living with HIV/Aids. Among them is Edrine Gedeon, 42, who discovered she was HIV positive in 1999.

She has three children in her care including nine-year-old twins: a boy who is unable to walk and a girl who is blind. Edrine also cares for her nine-month-old granddaughter, as her eldest daughter died in childbirth.

However, Edrine is now a participant in Concern Worldwide's pilot project to provide micro-credit to people living with HIV/Aids. She received a loan of 200 gourdes (£2) from Concern and initially she bought sweets and cookies to sell. With money earned from selling these she expanded her business and now sells batteries for radios, and other non-perishable items such as glue, cigarettes, oil and rice. She only sells non-perishable items as she does not have to worry about goods going off if it is a slow day.

Once she paid back the initial loan, she took out a loan of 20,000 gourdes (£250) to allow her to buy more stock for her business. Edrine repays her loan and still has enough money to buy clothes for the family and the kind of food she could never afford before. Her children seem in much better health due to their improved diet.

Edrine, together with her second husband, also attends training and information sessions at the Ason Centre, a solidarity group working with people living with HIV/Aids. She believes information the couple have gained here is the reason that he remains HIV negative.