All walks of life
HIV affects everybody, in every walk of life. Deaths among educated groups of people – teachers, health workers, key community members including priests – have led to a huge skills shortage. In Zambia and Malawi health workers have suffered a five- to six-fold increase in illness and death. The deaths of so many health professionals add to the difficulty of delivering health care in an already overburdened system.
The widespread effects of HIV are not confined to Africa. Eastern Europe and the former Soviet Union are seeing the rapid emergence of epidemics, and HIV prevalence is continuing to rise in Latin America and the Caribbean. In Haiti, six per cent of the adult population aged 15–49 is infected with HIV. In Asia, an estimated six million people live with HIV. Many are in the poorest and most vulnerable communities.
In UK and the United States, HIV prevalence rates continue to rise, too. But as treatment is widely available, the visible consequences of young adult illness and death have almost disappeared.
Some successes
The history of HIV has been marked by some successes – and many failures. Some countries, where there has been strong political leadership, have shown that HIV can be prevented and the crisis turned around. But elsewhere, political and religious leaders are turning a blind eye with terrible and fatal consequences. The opportunities offered by new drugs and the hugely energetic and committed efforts of local community groups are being ignored at the cost of lives.
Mother-to-child transmission
One notable success has been the prevention of transmission of HIV from mothers to children during birth and early infancy.
The Atlanta-based Center for Disease Control and Prevention reported its first case of possible mother-to-child transmission in 1982, and in 1985 HIV transmission through breastfeeding was described. Without interventions, mothers infected with HIV have about a one-in-three risk of passing the virus to their babies. In 1994, a study showed that the antiretroviral drug AZT could halve the rate of transmission. This landmark discovery was followed by a further trial in Thailand, which showed that another regimen – cheaper and easier for patients to take – could also halve transmission, even in poor communities.
In 1998 prevention of mother-to-child transmission became even simpler and cheaper. A single dose of the antiretroviral nevirapine given to the mother during labour and a single dose to the newborn baby was found to be effective in preventing HIV. The drug company Boehringer Ingelheim which made nevirapine then offered the drug free to developing countries with programmes to prevent maternal transmission. Today, in industrialised countries, mothers with HIV can take combination antiretroviral therapy, have routine caesarean sections and offer their infants breast-milk substitutes. This has reduced the risk of transmission from mother to baby to just one per cent.
With cheap and easy interventions available, prevention of mother-to-child transmission is becoming more widely possible – in theory at least – in poor countries. However, in developing countries, where the vast majority of HIV-positive mothers live, very few currently have access to HIV testing. Therefore they cannot benefit from nevirapine.
As with everything in the story of HIV, nothing is easy, simple or inexpensive. The issue of infant feeding, for instance, offers both possibilities and risks. In the UK, every woman with HIV is advised to use infant formula to feed her child, to avoid transmitting HIV through breast milk. In developing countries, however, those few pregnant women who do have access to testing, and subsequent access to nevirapine, are faced with difficult infant-feeding choices. Even if baby milk is available, it can be expensive. Access to clean water is essential, as is fuel to prepare feeds. There are also social obstacles; sometimes feeding newborn babies with infant formula is tantamount to declaring oneself HIV positive.
Coming to life: drug treatment
In the 19 years since AZT was identified, there has been remarkable progress in drug treatment for people with HIV. In 1995, a new class of HIV drugs, called protease inhibitors, was discovered. These, usually combined with two other anti-retrovirals, have proved to be highly effective at preventing HIV replication and thereby reversing the suppression of the immune system caused by HIV. Combination therapy converts fatal HIV into a chronic manageable condition such as diabetes.
By 1997, for the first time since the outbreak of the HIV epidemic, the number of HIV deaths in the US had dropped dramatically. The death rate in the UK also fell, and places like the London Lighthouse hospice closed residential units once used to care for those who were terminally ill with HIV.
Early HIV regimens were complex and often unpleasant. It was not uncommon for patients to take up to 20 tablets a day, often with different food restrictions, and the drugs sometimes had adverse effects and serious interactions. Today modifications of the earlier drugs have made them less toxic and combining drugs has made it possible to treat HIV with a single daily combination tablet. Although laboratory monitoring is preferred, lack of access to laboratory facilities – the norm in many parts of the world – is no longer seen as a barrier to using antiretroviral therapy.
The price of life
The other major development in the antiretroviral story is more recent and has to do with price. In 1989, the cost of AZT was US$7000 per year. When combination therapy became available in the UK after 1995, the cost of a year's treatment was often in excess of £12,000 (roughly US$18,000). With annual per capita health spending in many of the most-affected countries of less than £10 (around US$15), it was hardly surprising that virtually no-one in developing countries could afford treatment.
In response, Aids activists in both the industrialised and the developing world mounted intense campaigns. They lobbied governments to allow parallel importation of generic drugs avoiding patents, and they demanded that drug companies cease what they called "price gouging" and "profiteering" and reduce their prices significantly.
These campaigns have been highly successful. Generic combination therapy is now imported into countries such as Zambia, where it is available at less than £20 (US$30) per month. Although even these reduced prices keep the drugs out of the reach of the majority of people, many of my former colleagues and friends in Zambia – doctors, nurses, teachers and priests – can afford them and are today, five years since I left Zambia, still alive.
A global health emergency
This price reduction has also led world leaders and international donors to support efforts to increase access to treatment. Worldwide, of the five to six million people in need, only 300,000 are on antiretroviral therapy. In sub-Saharan Africa, only 50,000 people – out of the 4.1 million who require therapy – have access to drugs.
The failure to deliver antiretroviral therapy to the millions of people who need it is now seen as a global health emergency. To address this emergency, WHO has committed itself to achieving the "3 by 5" target – getting three million people on antiretroviral therapy by the end of 2005. It is up to the governments of the rich countries to find the money to do this.
A community response
Another success has been the increased role of nongovernmental and local community organisations in leading the response to HIV. Whether in churches or campaigning groups, community-based HIV work is a response to the witnessing, by community workers, of the tragedy they see unfolding around them. While governments remain the crucial element in helping to turn around the trajectory of the virus – only governments have the power and funding to create a national response to the crisis – local organisations have the sensitivity to, and knowledge of, local communities which makes them especially effective.
Many failures
Yet as significant as these successes are, the deaths and new infections go on.
Effective HIV prevention is needed everywhere. There are no easy solutions. Condoms prevent sexual transmission. Clean needles prevent transmission in health settings and among drug users. But lack of funding and inadequate basic infrastructure for. health and
education have prevented programmes from being effective – or even, particularly in post-conflict nations such as Sierra Leone or Angola, from reaching people.
Social barriers to changing sexual behaviour are often complex and little understood, and current ways of promoting safe behaviour are not effective. Even in the UK, with universal access to sophisticated health care and education, rates of sexually transmitted disease are alarmingly high among young people and rates of HIV infection continue to rise – particularly among vulnerable groups. If highly populated nations such as India, China and Nigeria – which until now have had relatively low prevalence rates – do not mount effective HIV prevention measures, the global toll of HIV infections will be even more enormous.
Stigma and positive leadership
A unique feature of HIV is the overwhelming nature of the stigma. No other infectious disease has been so demonised. Stigma and denial are the greatest barriers to HIV prevention. On World Aids Day in 1995, Nelson Mandela called on all South Africans to "speak out against the stigma, blame, shame and denial that has thus far been associated with this epidemic". Three years later, neighbours beat to death the South African Aids activist Gugu Dlamini after she revealed her HIV positive status on television.
In countries such as Uganda that have been successful in reversing HIV rates, efforts to challenge stigma have been key. This has been achieved by involving people living with HIV in the development and the implementation of HIV programmes. HIV-positive priests and religious leaders, politicians and members of the armed forces, pop stars and sports personalities can all be open about their status. They can effectively challenge stigma and denial, and promote compassion and understanding in their communities. But where stigma is not addressed – in the majority of countries – HIV is spreading virtually unchecked.
Orphans
A tragic consequence of the HIV epidemic is the rapid rise in the number of orphans, and the consequent rise in the number of households headed by children and grandparents. By the end of 2003, more than 14 million children had been orphaned by HIV/Aids. It is estimated that in some countries in sub-Saharan Africa, poor households have an average of four additional dependants to care for. UNAIDS reports that 40 million children in developing countries will lose one or both their parents to HIV by 2010.
"Every day there are more and more children on the street," reports Pascal Rukengwa, director of Humanité Nouvelle, another organisation supported by Christian Aid in Kinshasa. "Among these are more and more children whose parents have died of Aids." His organisation now runs a theatre group and a day centre for these children and helps them develop skills such as shoe-shining so that they can work rather than beg and steal for a living.
Creating memories
HIV has changed the way we look at public and private memories. Last century, millions of young men were killed in two world wars. Public memorials were dedicated in their honour. In contrast, the flu epidemic in 1918-1919 left somewhere between 20 and 40 million people dead. There are very few commemorations in their memory. But the gay community, affected first by HIV, needed to make its own statement in response to this tragedy. HIV was killing young, articulate, creative gay men in their prime, and their community was determined not to forget.
In 1987, a gay-rights activist named Cleve Jones made the first panel for the Aids memorial quilt, in memory of his friend Marvin Feldman. This was the start of the "Names Project", a global initiative in which friends and families remember loved ones lost to HIV by creating a quilt panel representing the life of that person. The project provides a creative means for remembrance and healing. In addition, it has illustrated the enormity of the epidemic, increased the general public's awareness of HIV and Aids, assisted with HIV prevention education activities and helped raise funds for community-based Aids service organisations. Today, there are Names Projects in 43 countries, and 44,000 quilts have been made to commemorate loved ones who have died from HIV.
In 1988, WHO designated December 1 World Aids Day. HIV is remembered publicly in many ways, in many cities – especially in Africa – on World Aids Day. Unlikely partners such as the Mothers' Union and Aids activists march arm in arm, displaying banners demanding access to treatment or promoting love and support for people living with AIDS. Candlelight vigils bring communities together to demonstrate remembrance and hope. Church services on World Aids Day provide a spiritual context which allows people to grieve for dead friends and relatives and renew their commitment to fight stigma, discrimination and HIV itself.
In 1991 the red-ribbon symbol was introduced as a way for people to promote awareness about HIV, to show their solidarity in caring about people who are infected with and affected by HIV and Aids, and to express their support for action against the epidemic.
Marie-Jeanne, a photographer with FFP, expressed what many people feel: "I want to live. I want to work. When we are given a chance we can achieve things. It's all a matter of will. If we want to do it, we will. However, it's very difficult in this country. We don't have many opportunities to expand our horizons."
Dr Rachel Baggaley
Head of Christian Aid's HIV Unit
Honorary research fellow at the London School
of Hygiene and Tropical Medicine
For more information on memory work and related resources see
www.ifrc.org
www.plan-international.org
http://web.uct.ac.za/depts/cssr/asru.html
For more information about Christian Aid and its work with HIV/Aids, see www.christianaid.org.uk or telephone +44 20 7523 2172.
Worldwide Organisations Working to Fight HIV/Aids
PLAN
PLAN has several projects in progress all round the world to assist and support children affected by the HIV/Aids epidemic. Uganda is the African country which has best succeeded in turning the epidemic around, but despite this, the country still has a large number of orphans. In Uganda, PLAN is working to provide vocational training for young people who have been forced to leave school when their parents died. Single mothers with HIV/Aids are provided with nursing care and help in finding new ways of earning a living. PLAN was instrumental in initiating the Memory Books project, which is aimed at helping parents with Aids to prepare their children for the fact that they may soon be orphaned. The books help parents to express their feelings, thoughts, experiences and hopes for their children's futures.
Burkina Faso
Association Solidarité et Entraide Mutuelle au Sahel (SEMUS)
SEMUS works in a region where few other organisations address HIV/Aids. It provides a range of integrated development activities including income generation; food security; education; health care through provision of drugs at low prices from its pharmacy, and provision of drugs and medical equipment to a local health centre.
Burma (Burma/Thai border)
EMPOWER (Education Means Protection of Women Engaged in Recreation)
Established in 1984, EMPOWER aims to provide migrant sex-workers with access to education and information in order that they are better informed and better able to protect themselves from abuse and health risks, including HIV.
Activities include typing and computer classes, counselling, health and safer-sex workshops, distribution of condoms.
Democratic Republic of Congo
Fondation Femme Plus (FFP)
FFP is an association of women living with HIV/Aids. It specialises in psychological, social and medical support to more than 2000 women in the DRC, including counselling, medical treatment, support for small businesses and practical support such as food and help so that children can attend school. "When my husband died, I didn't want to be open with anyone. I felt as though I had died with him. But thanks to FFP, I feel like I am a worthwhile person, and I can go on living," Mama Dedy, mother of two, told Christian Aid.
India
Arogya Agam
Arogya Agam, based in Tamil Nadhu in south-east India, is related to the Women's Development Programme, pr
omoting women's empowerment socially, economically and politically, and increased understanding of and access to health, with a strong focus on an HIV/Aids programme.
It gives support and training to village health guides and community health committees to lobby for and monitor government health services and demand community rights to access health services. It also refers patients with sexually transmitted infections for health care and provides counselling. Arogya Agam mobilises villages to distribute condoms and raises awareness of HIV/Aids, particularly among young people.
I Die, But The Memory Lives On Page 9