A Poem written by a 16 year old girl living with HIV
This article is reproduced by kind permission of The Catholic Universe
Professor Jim McManus is Director of Public Health for Hertfordshire, HIV Lead for the UK Association of Directors of Public Health, President of the Guild of Health and St Raphael and Vice Chair of the Health and Social Care Advisory Group of the Catholic Bishops Conference in England and Wales.
Very shortly, on 11th October, Catholics for AIDS Prevention and Support (CAPS) will be launching a new online film resource, Positive Faith. So what? I hear you ask. Well, these videos will have people living with and affected by HIV, on film, and others, discussing HIV and how it interacts with their faith.
The Archbishop of Southwark, his Anglican counterpart and Fr Timothy Radcliffe OP, former Master of the Dominicans, will do something very special. They will launch, in a room full of professionals, community activists and people living with HIV a series of videos on HIV and coping, and a new website.
What’s so special about that? I hear you ask. Well, the videos are funded by an agency of Government – Public Health England. It was co-ordinated and led by Catholics for AIDS Prevention and Support. And they won the funding through a competitive process, while talking explicitly about faith. The videos will, in a time when it feels like faith is sometimes an unwelcome word in the public sector, focus on how people of faith make sense of preventing HIV, living with it, and supporting those affected by it. That’s pretty special. Public Health England, CAPS, Kip Loades – a film maker, Vicki Morris, the Project Manager, and a host of people with and affected by HIV deserve high praise for the tool they are about to put into our hands.
I have been privileged – both as a Catholic and a Public Health Profesional – to be for both Public Health England and CAPS the sponsor and supporter of this project. It’s something I will never forget.
Why all this excitement, you may well ask? HIV is now a manageable condition and if you get diagnosed and treated with HIV early, your life expectancy is more or less the same as if you didn’t have it. Moreover, treatment can suppress the virus to the point where it’s considered undetectable in the bloodstream, and for people who are undetectable it is almost impossible to pass the virus sexually to their partners. So, why bother?
Well, several reasons. Over 101,000 people in the UK have HIV. And around 6,000 new diagnoses happen every year. Some areas have many more people than other areas. But most parishes in the UK will encounter someone with HIV, or have people close to someone with HIV. You may in some Churches see a discreet red ribbon poster, a sign to people with HIV and their loved ones that they are welcome. We shouldn’t need them. But we do.
Another major issue is that while HIV might be manageable, it’s definitely no walk in the park. Stigma, mental health issues, problems with side effects from medications (liver function, bone density, kidney issues and more) the unpredictability of a long term condition, and the fact people with HIV living long term with it are at heightened risk of some cancers, heart disease and other diseases, as well as showing signs of long term cognitive problems, mean what was once an early death has been replaced by a need to find strategies to live and cope long term. If that’s not enough there are still too many people – especially women – being diagnosed very late, when the virus has done enough damage to the body to mean the risk of death is much closer and life expectancy is significantly reduced. Even though with treatment they can regain some health, they still have ongoing health issues worse than if they had been diagnosed early.
The successes of longevity and helping people keep the virus suppressed in their blood bring many more psychosocial challenges – coping, relationships, inclusion, stigma. I could go on. HIV continues to present challenges to people, and because of that, it continues to present challenges to our churches. And that’s where this resource comes in. People with and affected by HIV are still on many margins, hence the need for this project.
The new resource of films and the website Positive Faith will have people living with and affected by HIV, on film, and others, discussing HIV and how it interacts with their faith. That’s important in my book in and of itself. In fact, if you think back 20 years, someone with HIV showing their face on a video would have been almost unthinkable. How far we’ve come! And how far we have to go.
But what is even more important in my book is the fact that bits of the health world are re-learning what people of faith never forgot – that we understand our health and health behaviours, including coping with challenges, through and with our faith. And here we have a video resource doing just that. There will be a website, with reflection resources, and other materials and tools. For people of faith, their faith is intimately linked to their health and their lives. There is ample scientific research on that. There is also ample research that being who we are, and being valued for that, is crucial to full humanity. So being able to understand where HIV affects us, whether living with it, being in the family or friendship circle of someone living with it, or seeking to remain HIV negative, must include the faith dimension for people of faith.
For those of us of faith we have an aching need for God at our core as the Psalm says “like the deer pants for running streams”, and our public services and faith communities insisting we should compartmentalise bits of that does nothing less than disintegrate us, and dehumanise us. Those who say leave your faith at the door of this hospital but claim to value diversity and personalisation, or leave your HIV at the door of the Church but claim to welcome all, radically undermine the very values they purport to affirm and the scientific evidence behind it; the whole person is called to health, not just the bits we feel we can deal with.
A further reason is that this project is a tool to inclusion in our churches of people with and affected by HIV. For us, that must start from encounter with God and encounter with our affected neighbours because of love for God and for them. The Churches have been patchy at that.
Finally, the nature of HIV has much to teach us about health. People with HIV, like those with cancer or many conditions, play a hugely important role for the Church. Living with HIV is about adjustment to a changing reality of health experience and expectation, and says much about what we can be despite a condition which remains life-threatening, as well being manageable. Now, isn’t that a rich model to reshape our Christian understanding of health in this life with?
This Video expresses both the joys and rejoicing, the coping, crying to the Lord, the wilderness as well as places of inclusion, and the expectation of God’s people with and affected by HIV. The task for the institutions of all our Churches now is to proclaim God is with them, with us, and in doing so, include, love and learn from each other.
I am constantly moved to have been the Sponsor for this project. It’s been amazing to see Church and Health agencies work together so very constructively, with mutual respect. It’s been a privilege to see the witness of so many with and affected by HIV. It’s been an opportunity for me personally to reaffirm that my faith and my professional public health life can interact positively.
This will be a powerful resource. I commend it to you.