Feature Article

Part of the solution

As I entered the pristine reception of Mildmay in east London, which opened as Britain's first Aids hospice 21 years ago, I recalled the iconic photograph of Diana, Princess of Wales, sitting on the ward beside a dying young man, holding his hand. It was at the height of the panic and ignorance surrounding the virus, when Aids patients were regarded as "untouchables".

Now the picture is very different. Mildmay is no longer a hospice and its patients are mostly middle-aged. They potter between their en-suite bedrooms and balcony and the sitting room. None of them is dying, thanks to antiretroviral medication, but all are suffering the long-term effects of HIV, which are similar to dementia. They have a condition known as neurocognitive impairment.

In anticipation of World Aids Day on 1 December, I met Sr Marie Connor, director of Mildmay UK since 1992. It was her last week in the post before becoming Prioress General of the Servite order and she was concerned that HIV-Aids is falling below the radar.

"More people are being infected, most of them heterosexuals, and yet many are not being diagnosed until the virus is advanced," she explained. "The later people seek treatment, the more likely they are to develop HIV-related neurocognitive impairment."

Currently there are 77,000 people with HIV in the UK, but 21,000 of these do not know they are infected, according to the Health Protection Agency. Neurocognitive impairment strikes the brain and nervous system 15 or 20 years after infection. One of Mildmay's day patients is 20 and was born with the virus, another is 77.

Mildmay is Europe's only specialist unit for neurocognitive impairment although it is now training volunteers in Eastern Europe and has centres in Rwanda and Zimbabwe. Mildmay has 16 beds and a day centre for 16, where it stabilises patients' medication and provides holistic treatment and rehabilitation. Eighty per cent of patients are able to return to independent living. I talked to Chris, 55, whose speech and movement have been affected by the condition, who said: "It is lovely here. People are so warm and kind and friendly." In the day centre, men and women were waiting to visit the physiotherapy gym.

Worldwide, the HIV pandemic is in decline. In their annual report published last Tuesday the Joint United Nations programme on HIV-Aids (UNAids) and the World Health Organisation estimated that new HIV infections were 30 per cent lower than at the epidemic's peak in 1996. They also found that greater access to antiretroviral drugs had reduced the death toll by 10 per cent in the last five years. But still fewer than half the people who need the drugs are getting them and there remains the major issue of supporting 33.4 million who are living with HIV.

Sr Marie has watched HIV-Aids slide from the forefront of public consciousness into the bracket of "other people's problem". She says the pernicious stigma against the disease has also hindered fund-raising. Her anxieties were echoed on the other side of London by the HIV team at Tearfund, the Christian development agency that invests £3.3 billion a year in 130 HIV projects abroad.

Tearfund is on a mission to mobilise the Churches, particularly in Africa, which remains the epicentre of the pandemic. It believes that with Churches on side it can help remove stigma that in turn will change people's behaviour and stem the spread of HIV.

"The sphere of influence of a church leader in sub-Saharan Africa is bigger than anything," said Veena O'Sullivan, who runs the HIV policy unit at Tearfund and represented civil society on Aids strategy at the World Bank in Washington DC last month. An idea of the scale is reflected in the statistic that 99.5 per cent of people in Africa claim a "religious connection". To front this ambitious plan, Tearfund has appointed five HIV champions as part of its Inspired Individuals programme. These are Christians who are HIV-positive and equipped to challenge the prejudice, inertia and bureaucracy of many Churches and bring about change.

Patricia Sawo, a pastor in a Pentecostal church in Kitale, Kenya, who preached that HIV was a curse from God until she found out she was HIV-positive, explained: "As a religious leader - a woman leader in my Church - I believed it was a punishment from God. I believed in those days that HIV and Aids was a disease of homosexuals. Today I know that this is not true."

Mrs Sawo discovered she had the virus when she was pregnant with her fifth child and has since adopted three more. She had only had one sexual partner - her husband - who is HIV-negative, and can only guess that she contracted HIV during one of her births. Mrs Sawo fasted and prayed for deliver­ance. When this failed and her HIV status became public, both she and her husband lost their jobs and their children were asked to leave their school. Now she is an inter­national activist who challenges this stigma. She also runs an orphanage for 145 children whose parents have died of Aids.

Another champion is the Revd Ephraim Disi, a former bishop of the Brethren of Christ Church in Malawi, and a pastor of pastors ministering to fellow clergy living with HIV and Aids. His wife died of Aids and he has since been married again to an HIV-negative woman.

In Uganda, Tearfund has appointed Dr Stephen Watiti, who works at the Mildmay hospital in Kampala, writes a newspaper column about HIV-Aids and educates church leaders about the virus. In Kwazulu-Natal in South Africa, where one in two mothers at antenatal clinics test positive, the gospel singer Musa Njoko is combating stigma through her music and local government work. There is also Gracia Violeta, from Bolivia, an academic who sits on international committees defending the rights of women with HIV.

"We are seeing HIV heal the Church," said Gary Swart, who runs the Inspired Individuals programme. "The Church is having to face things it does not like to face such as how women are treated, marital infidelity and celibacy before marriage. HIV has taught Christians that we must bring these things out into the open and begin the healing process."

He said introducing people with HIV is the best way to erode stigma which he believes exists even among the well-meaning Christians at Tearfund's London office. "People may not admit it but deep down they hold a stigma and worry about drinking from the same cup as someone with HIV. If you engage at a personal level with someone with HIV it is very hard to hold that stigma."

Earnest Maswera, Tearfund's representative in Mozambique, said a powerful tool in his country had been a group of HIV-positive educators called Shingirai, who combine drama with workshops in marketplaces and prisons. They also train pastors to communicate effectively with their flock about HIV.

In the Congo, Eulalie Rutiba, an HIV-­positive nurse working in preventing mother-to-child transmission, said women will not tell their husbands if they test positive, and are ashamed to accept treatment which could prevent the baby getting the virus. 

Reading Tearfund's reports, I am struck by the random and varied nature of the 130 HIV projects. In Zimbabwe there are church volunteers trained to visit Aids orphans and to know how to detect malnutrition, or abuse, and how to protect the child's inheritance rights. In Mumbai, India, a project is focused on the outcast community of transgender prostitutes in the slums and another in Kampala reaches the male motorcycle taxi drivers.

"HIV-Aids is down to human behaviour and human vulnerability and that is why we need zillions of strategies," explained Veena O'Sullivan. She said condom distribution, teaching about abstinence and fidelity are part of the answer but no single solution exists. "HIV is preventable, even mother-child transmission is preventable, yet infection rates continue to rise," she said, adding that Churches are in a unique position to reach people at their most vulnerable. "HIV is about relationships and it's about what makes somebody vulnerable. It could be poverty, migration, loneliness, fear. It is in the place where someone is unsafe."

Church leaders have influence because they are alongside people at turning points in their relationships: at marriage, baptism and funerals. But the challenge facing all HIV-Aids charities, from Mildmay in London to Tearfund in Africa, is overcoming donor fatigue. It is because there is no satisfying solution like buying a vaccine, or building a well, to alleviate human suffering that people tire of giving. But I saw much more than a glimmer of hope in the strategy to mobilise Churches. At the end of every dusty track is a church with unparalleled reach into the practical and emotional lives of people.