In less than a month, on 11th October 2017, a new and I think ground-breaking resource will be launched which tells the story of people living with and affected by HIV.
What, another one? I hear some of you ask. Yes, and I’ll tell you why.
Why another resource?
This resource is different. Funded by Public Health England, through their HIV Prevention Innovation Fund, this new resource will feature people prepared to talk despite the stigma. It privileges the voices of people living with and affected by HIV above other voices. Multiple people living with HIV and affected by it are in the resource, have co-produced the resource and have been in workshops considering, commenting on, augmenting and amending the resource. This has been, in and of itself, a powerful experience.
This resource has a series of videos, accompanied by a website of resources, blogs and other materials. It features people with HIV prepared to share how they thrive, cope and how HIV, their health and the deepest issues of their lives come together, and the problems and the positives of that.
And I have been privileged to be the sponsor of that project, at PHE’s request.
This will be a tool to combat stigma. It will be a tool to show people the nuanced reality of living with HIV. It is a tool for people with and affected by HIV. And it is a tool for celebrating people with and affected by HIV.
The changing nature of life with HIV
We are in a time when virological suppression is a major success story (People I work with, people I love who ten years ago would have died are still alive and well and every day I cherish that and them.)
We are in a time when we could achieve the end of new HIV transmissions, and tools like PrEP are further resources in the long travail which has been the journey since the first people I knew and loved with HIV died. Today, many people with HIV are thriving , some in jobs vital to our society, others quietly living and working and relating, living out their gifts and their talents.
But, others still aren’t thriving. And it’s not just about biology. Far from it. With the success of virological suppression – where the virus is essentially regarded as undetectable – come a range of opportunities, choices and still many challenges. Stigma, ongoing challenges of living, new health threats to people with HIV, and the need to renew our efforts to cherish those with and affected by HIV while reducing new infections.
People live longer, they contribute their talents and gifts to their loved ones and our society. Great. For some, cognitive decline, however subtle, diseases of ageing in an ageing cohort of people with HIV, negotiating social support, relationships and just coping with life alongside a lifelong health condition, remain psychological, social, practical and – dare I say it – spiritual and existential challenges.
Negotiating life with HIV still takes skill. For every person who accomplishes it with panache, there is a story of sheer hard work behind it.
In a world where Pre exposure prophylaxis is becoming more available (though I notice our trial in England is still dragging its heels) and undetectable status means different issues for negotiating intimate relationships than it once did, we need more than ever to reaffirm people, reduce stigma, and most of all, learn from our friends, colleagues, loved ones, partners and residents with HIV. One of the world’s foremost HIV resources, Aidsmap has a great post on why it endorses the prevention access statement for HIV which makes you realise just how much has changed, and how much we still have to achieve.
So come on, what’s special about this, really?
Well, two things. First, the people in it. Secondly, the people in this resource, and the resource itself, will address HIV through the context of Faith. Specifically, Christian faith in this resource, but other faiths may follow suit.
I want to tell you why, and why health professionals should take notice.
But let me say this first: this resource is not an exercise in Christian exclusivism. It’s an exercise in affirming the particularity of faith and producing a model others can use and follow. A one size fits all approach to faith is an immature approach to diversity. In the same way most of us have multiple protected characteristics. Seeing people through the lens of one shows how poor the imagination of much of our diversity policy and the assumptions around it still are.
The Project will be called Positive Faith (Launches late October 2017.) The resource features people from a range of Christian churches. I’ll speak about why later.
A few thanks to the people who’ve worked hard
The project is being managed and led by Catholics for AIDS Prevention and Support. The wonderful Vicki has project managed it. CAPS are a small charity which provides direct support and care including supporting Positive Catholics. Our local Hertfordshire HIV Voluntary agency, HertsAid, has given significant support and effort to supporting this programme. And Public Health England have, of course, funded it.
Some reasons why we need this
First, we know from ever greater scientific evidence that for people of faith, their understanding of health challenges, their coping, even their health behaviour, is profoundly influenced by and mediated through their faith. People of faith – even those who feel excluded by it – greatly understand their health experience, even down to their efforts to live with HIV or stay free from it, in a way linked to their faith. We still lag behind in the UK with that understanding in many of our health services, despite it being a commonplace of Health Psychology for decades. We cannot do health without encountering faith in dialogue for people of faith. Ellen Idler’s 2016 book Religion as a social determinant of Public Health (Oxford University Press) is a lucid presentation of the evidence for this.
Second, health services sometimes still seem to remain squeamish, embarrassed or discomforted by the presence of faith. It’s the protected characteristic of the equality act many feel uncomfortable with. But over 40% of people in the UK still confess a religious faith of some kind. NICE guidance, NICE standards and more and more scientific evidence affirms that to personalise health care, we must recognise that we cannot treat faith as something totally private and separate from it. If a person of faith is in the clinical encounter, so is the issue of faith.
Churches struggle with HIV, Health services struggle with Faith
Faith is not going away. It is not dying. Even if you think it’s a minority pursuit, it’s important to that minority, which is still one of the largest in the country. And this resource is an attempt to redress an inequity in health – that of faith and HIV.
We must do better on this as a health system. This new resource speaks actively into that. If churches are sometimes uncomfortable about HIV, health services still feel uncomfortable about faith. This resource seeks to bridge that gap. To that extent this is a series of interventions about reducing stigma to build health equity for a population which still faces many challenges.
Why only a Christian resource so far?
Thirdly, this resource seeks to build inclusion of people with and affected by HIV in churches. To that extent, this clearly is a public health intervention. And this is why we haven’t produced a multi-faith resource. To understand HIV in the context of a particular faith, there needs to be dialogue in the language of that faith for people who have it. Yes, we need Islamic, Judaic, Hindu and more resources. And I hope people will use this approach as a template. But for a Christian black African woman to understand her HIV and her faith or for a gay male Christian to understand his faith and HIV prevention for himself or others, we and they need to relate that Christian faith specifically to health.
Is this really about prevention?
How will this prevent HIV? Well, by affirming and including people and pointing to them how much their health is something to be cherished and how much their faith acknowledges this. And we need to find a way to keep ourselves healthy and resilient to get the best from life. And health doesn’t mean a blissful state of freedom from any problem. It means adjustment to the realities of our physical, psychological and social challenges and limitations.
This resource sits firmly in the tradition of public health interventions to strengthen individuals and change communities.
More in-depth reflection
Nearer the time the Catholic Press are expected to cover this with some significant space. Articles have already been commissioned by The Tablet and The Catholic Universe . The Catholics in Healthcare Blog will obviously carry a post. The Pastoral Review will carry a more in-depth article on the pastoral, theological and church issues around this.
The resource will be launched on 11th October 2017 by the RC Archbishop of Southwark and the Anglican Bishop of Southwark at an event in London in which people with HIV in the Video will speak. Fr Timothy Radcliffe, OP, the Master of the Dominicans, will speak alongside people with HIV. For invitations contact Vicki Morris the Project Manager or Jim McManus the sponsor.