Around a third of all HIV-positive people living in the UK are of African descent.¹ According to the BASSLine survey of HIV-positive Africans in England,² over 70% of black Africans are Christian and just under 20% are Muslim, while only 6% say they have no religion. The church is central to the lives of many HIV-positive African people living in the UK, and recently the role of faith leaders in promoting HIV awareness has been recognised, along with the need to provide clergy with information about HIV prevention and treatment.

Winnie Sseruma, HIV Mainstreaming Co-ordinator at Christian Aid, and herself HIV-positive, explains:

“Religion is inextricably intertwined with many African people's cultural and social beliefs and values. It’s particularly important to people living with HIV as the thing people are most afraid of when they discover they are positive is that family and society may reject them.

“Many of them feel that their faith will hold them together and that’s the place where they will seek solace, the church or the mosque. It gives you a sense of normality even if you do not disclose your status as you are talking about normal things. You can get relief and derive a lot of strength, and when people are facing challenges and struggles they feel that they can rely on their religious beliefs for answers.”

Informed and knowledgeable faith leaders are therefore crucial in a large section of the UK’s HIV-positive population finding support and acceptance at their place of worship.

Edith Biryabarema was diagnosed with HIV 19 years ago and spent some time at Mildmay Hospital in east London recovering from TB. Here she met Dr Jeanette Meadway who is also the Minister-in-Charge of St James’ Church in Stratford. Edith began attending the church and gradually recovered her health with Jeanette’s support. Edith says:

“I met Jeanette when she was my doctor. I didn’t know she was a Reverend. I had TB 15 years ago and the doctors gave me a month to live. But I got better and every day, I thank God. Faith plays a part in your health; without faith everything else is useless. God made us for a reason and until that purpose is finished we are here.”

Edith was encouraged by Jeanette to take an active role in the church and she is now the Assistant Warden.

I met Jeanette at her church. “It’s important that churches involve people with HIV,” she says; “Not just sitting in the pew, but actively; people with HIV have much to offer their communities. If Christianity was as it’s supposed to be they would feel totally accepted.

 “Jesus said he would accept anyone who came to him. When people go through difficulties their faith helps a lot as you think God has a plan for you, which may just be different to what you thought.”

Acceptance and encouragement can be compromised when churches encourage people to pray to be cured and stop taking their antiretrovirals (ARVs). Although this is rare,  there are a small minority of pastors from different denominations who choose to remain vague about healing and HIV and, often inadvertently, lead some members of their congregations to stop treatment.

The message that God cures HIV through prayer is not necessarily intended to mean “without medicine”. But it can be misinterpreted by congregation members.

“The instances where people have actually stopped treatment are not as rare as we may think,” says Winnie Sseruma. “A combination of strong religious beliefs and massive doses of denial, fear and sometimes mental health issues often lie behind these decisions.” 

Faith and HIV in Action³ is a report examining a survey of African faith leaders and churchgoers in England, conducted by the National African HIV Prevention Programme (NAHIP) in 2007-08. The 66 participants were Christian faith leaders, church elders or clergy or congregation members of a black-majority church. All but two were Protestant and 63% defined themselves as Pentecostal, a movement within Christianity that places special emphasis on a direct personal experience of God through the baptism in the Holy Spirit.

Only a small proportion of respondents (15%) were aware of people in their congregation living with HIV, while 12% were sure there were none and nearly three-quarters were unsure.

All but two leaders participating (97%) knew that ‘There are HIV medicines that can help people with HIV to stay healthy’, though two-thirds did not know that almost one in 20 of all black Africans living in England was living with HIV.

When it came to asking more theological questions, most leaders surveyed had reasonably liberal or compassionate attitudes: 84% disagreed with ‘HIV/AIDS is punishment from God for sin’, and 70% disagreed that ‘the suffering of those living with HIV/AIDS should be exalted as a virtue’.

Attitudes towards whether HIV infection can be cured were rather different. Only a slight majority believed that ‘There is no cure for HIV infection once someone has it’. And three-quarters believed there are people who have been cured of HIV through prayer alone, although no-one felt that taking antiretrovirals ‘showed a lack of faith in God’.

If someone with an undetectable viral load stops their antiretrovirals, their viral load may remain undetectable for quite some time. At this point people may believe that they have been cured of HIV by prayer and their experience used as an example within a church to encourage others to stop treatment.

Often churches rely on donations from the congregation, so if a church leader develops a reputation for ‘curing’ people, more people will attend and more money will be donated.

Faith and HIV in Action comments: “The belief that there are people who have been cured of HIV might become problematic, especially for people whose adherence to antiretroviral therapy leads to an undetectable viral load which is subsequently interpreted as a cure.”

Unfortunately there have been cases of people dying after stopping their antiretrovirals, believing they will be cured by prayer. African organisations recognise a need to engage faith leaders of all denominations in discussions about HIV prevention and treatments.

Edith Biryabarema says: “People respect their pastors and listen to them; pastors should learn about HIV and how it’s treated. I disagree that prayer on its own can cure HIV. I’ve seen people who have become born-again Christians and stopped their medication, and a friend of mine died because she stopped. She didn’t even remember her children and thought she was in Uganda.”

She adds: “In my opinion, young people are not taught the dangers of HIV in schools. Pastors should be teaching them how to protect themselves. Will our children just think that if they get it they can pray it away?”

However there are also faith leaders engaging in HIV prevention and treatment messages.

Reverend Mary Grace Masarakufa is the pastor at the Power Arena, a Pentecostal church in east London. She has organised two ‘Interceders Conferences’, in December 2008 and August 2009, after recognising the role of the church in health promotion. The Power Arena’s website explains their philosophy on HIV:

“Many people who are living with HIV seek support and guidance from God and so it is important that we educate and empower faith leaders so that they in turn can use their influence to raise awareness and understanding.

“We aim to encourage people to access voluntary testing and treatment services. This is part of a co-ordinated campaign to make sure people know the facts about the disease. Faith leaders have the power to influence many thousands of people. Our goal is to encourage them to use that power to raise awareness in their communities.”

Jeanette Meadway, who spoke at the Interceders Conference, explains:

“Doctors and pastors are seen as being in two separate camps and people won’t turn their back on religious knowledge so will instead follow the pastor. Pastors don’t follow scientific arguments. But my faith is that God created all the atoms and molecules and proteins so that we could create drugs when we put them together.”

Jeanette Meadway was involved with a leaflet produced by Mildmay Hospital called Prayer or Medicines for HIV - must there be a choice? which is available in many HIV clinics. The leaflet is aimed at Christians with HIV who may have been advised to stop treatments and use prayer. It explains the medical facts about HIV as well as including passages from the Bible to support the the concept that prayer and medicines work together to make people well.

It explains: “It doesn’t show lack of faith when we use medicines. Medicines are not different from everything else in creation. God gave them to us to use.”

The African HIV Policy Network (AHPN) has also recognised this dilemma with a range of resources.

Edna Soomre, Policy Officer at AHPN, explains that faith leaders can bridge the gap between medical and spiritual advice:

“This June AHPN relaunched toolkits for Christian and Muslim faith leaders and we are developing a clergy course to give faith leaders factual HIV information. The training has been developed with Southwark Diocese and will be piloted there – we can’t save the world in one go but we have to start somewhere.”

AHPN has worked with different churches and mosques to produce sensitively presented information. The toolkits use the Bible and the Koran to explain how religious leaders can support and help people with HIV. Clergy are offered training in basic knowledge of HIV prevention, testing, transmission and treatments and then given the toolkits to use with their congregation, aiming to cascade the basic facts to more faith leaders and congregations.

There will also be a World AIDS Day event at Southwark Cathedral on November 28^th, which will be led and developed by people living with HIV, and there will be a seminar at the Cathedral on September 19^th to develop the event. The event is open to anyone, of any denomination, who identifies with the Christian faith.

Winnie Ssemura was involved in the production of the Christian toolkit. She explains: “The leaders within the churches and mosques have an amazing reach and if they use that power responsibly they can make an enormous difference.

“When you talk to some church leaders they get incredibly defensive. It is true that they have been helping people with HIV since the times when HIV equalled death, but they now need to understand that instead of waiting to help people to die they need to help them to live.”

It is also recognised that when faith leaders give incorrect information such as that prayer alone can ‘cure’ HIV, it is other faith leaders who are best placed to challenge them. Edna Soomre says: “It’s much more powerful if one Pentecostal leader speaks to another and uses religious text to challenge misinterpretations that put people’s lives at risk.”

LEAT (the London Ecumenical AIDS Trust) has recently published Speak Out, Act Now, a leaflet on HIV from a Christian perspective. This also bridges medical facts and biblical beliefs, tackling the stigma people sometimes feel within their place of worship: “Faith-based communities have a special role in speaking up in order to break the silence surrounding HIV and AIDS”.

LEAT also provides a range of services, many of which are aimed at black and minority ethnic communities, including training for faith communities and HIV prevention work with youth groups, as well as hosting London's HIV Community Chaplaincy (which is open to people of any faith and no faith).

Difficulty coming to terms with an HIV diagnosis can be compounded if someone feels they have acted against their faith, or will be rejected by their community. One service LEAT offers is the Pluspoint Project, a low-cost psychotherapy service for those affected by HIV. Based at Fulham Methodist Church, it employs “a therapeutic model ideally suited to the issues raised by HIV in which the emphasis is philosophical and reflective rather than medical or psychological”.

When religious leaders give different advice than medics do this can cause confusion and detract from health promotion messages, as highlighted by the Pope’s comments earlier this year.

On a trip to Africa he said that HIV was “a tragedy that cannot be overcome by money alone and that cannot be overcome through the distribution of condoms, which can even increase the problem". Rather, he said, the solution lies in a "spiritual and human awakening" and "friendship for those who suffer".

His comments caused The Lancet medical journal to retort in an editorial that the Pope’s statement: "was outrageous and wildly inaccurate…by saying that condoms exacerbate the problem... the pope has publicly distorted scientific evidence to promote Catholic doctrine”.

Winnie Ssemura says: “I totally disagree with the Pope. We have to use everything in our capacity to reduce the transmission of HIV and condoms have to be part of that package.”

Despite controversies it is clear that for many African people living with HIV in the UK, their place of worship is a major support network. Recognising that faith leaders are in a strong position to educate and support people with HIV is something that should perhaps have been receiving more emphasis.

HIV and Faith⁴ is an AHPN-led discussion on the ways faith leaders can work with HIV organisations. Crucially, Muslim clergy have also been involved in its development as well as helping to develop AHPN’s Muslim toolkit. Sheikh Bashir from the North Brixton Islamic Cultural Centre, who was also part of the HIV and Faith discussion, says:

"Our brothers and sisters living with HIV do not deserve to be discriminated against. It is my fervent hope that these resources, insha-Allah, bring about a positive change in attitudes among Muslim and Christian leaders. Through our leadership we can protect our communities by raising awareness about HIV and AIDS.”

The Islamic Approach to HIV/AIDS: Enhancing the Community Response⁵ is a document summarising the learning and action points from the 3^rd Muslim Leaders’ Consultation on HIV/AIDS, arranged by AHPN, Camden Primary Care Trust and Lambeth Primary Care Trust.

It urged “all Muslim communities and their leaders to be concerned about the HIV epidemic, show compassion towards people living with HIV, encourage people to go for HIV testing and promote collaboration including inter-religious co-operation on HIV work.”

As antiretrovirals become more sophisticated and easier to take, it is important that people living with HIV are encouraged to adhere to their medication whilst receiving the spiritual support they require. The work already done by AHPN, LEAT, various faith-based organisations and others will hopefully help to ensure that faith leaders of all denominations are at the forefront of ensuring people attending churches and mosques are equipped with the right information about HIV. With the right training and support for faith leaders, a collaborative approach to giving HIV-positive people medical and spiritual advice can be fostered.

An HIV diagnosis can cause a profound personal crisis for people who fear their status cannot be accommodated by their faith.

As Winnie Sseruma says: “The main mode of transmission is sex and the inability of many religions and cultures to properly address sex, sexuality and sexual relationships is behind that. I think some religious leaders are of the view that if people are good in God's eyes they should not be getting HIV and therefore need healing.”

It is a welcome development that HIV organisations are now recognising that many people, not just from the African community, need to find support from their church and their faith, rather than in isolation or solely from secular HIV organisations.

African HIV Policy Network (AHPN), New City Cloisters, 96 Old Street, London EC1V 9FR. Tel 020 7017 8910. www.ahpn.org

London Ecumenical AIDS Trust (LEAT): 8th Floor, Hannibal House, Elephant & Castle, London SE1 6TE  Tel 020 7701 2200. www.leat.org.uk

St James’ Church, Stratford: St James Road, London E15. Tel 020 8491 6040. See www.stjohnse15.co.uk/stjames/

Power Arena: see www.powerarena.co.uk. Tel: 020 8593 3388

North Brixton Islamic Centre 180-182 Brixton Road Brixton SW9 6AT. Tel: 020 7735 9967 Contact: Mr Alhaji Saccoh: abubakarrhassan@hotmail.com