One moment changed my life forever - meeting my first patient with AIDS, and how it led to an international church-based movement in 18 nations - ACET

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One person changed my life forever

I will never forget the first person I met with AIDS: a young student in London in 1987.   I can tell you the hour, the day, the month.

Just one person sick in a London hospital, out of 72 million who have been infected so far with HIV, of which half have already died, mainly in Africa. 

For the rest of my life, I will go on re-living that traumatic moment.  Let me explain why.  It led to a national and international people movement.

I had been asked to visit the AIDS ward, as a cancer doctor, to advise the medical team on how to relieve the symptoms of those who were very sick and dying.  

I had no idea what I was going to find.

I knew very little about AIDS, and I confess I was quite anxious about it all....

AIDS felt like Ebola – back in 1987

What happened shocked me and changed my life forever.

AIDS felt a bit like Ebola, back then, with lots of fear about even being in the same room as someone with HIV. 

Fear of touch, fear of death, fear of plague

My own home care team of nurses and a social worker had already warned me not to get involved, and refused to help.  So I was on my own.

“If you accept any referrals you will be doing 24 hour on call yourself, 365 days a year.”

As soon as I walked onto the busy ward, I was struck immediately by the distressing sight of a young man on my left, desperately sick in a glass-walled room for all to view as they walked by – anxious, sweaty, fighting for every breath, and full of fear.

He had an oxygen mask over his face and tubes running into his body.

He was totally alone in that depressing side room and about to die.

I was horrified that anyone should be left by themselves, in such a state, in a London teaching hospital.

But that’s how things were back in 1987, before new treatments and better training changed the lives of so many others with HIV.

Equally shocking was that the entire ward was filled with other young men, all of who were also sick or dying from a completely preventable condition.

His family didn’t even know he was ill (he was afraid they would reject him and he did not want them to know) - and the medicines he was getting were doing little to relieve his suffering.

It was as if 30 years of hospice experience had been thrown out of the window. 

As a cancer doctor, impacted by AIDS

I was trained as a cancer doctor, looking after those close to death at home. For several years I kept my distance from AIDS – it was not an illness I was naturally drawn to; in fact the opposite.

But when I saw for myself the reality, the shocking rejection of sick people by doctors, nurses and other care workers, I realised I had to get involved.

Skills that some of us had in the care of those dying of cancer needed to be used urgently to help those in the advanced stages of AIDS as well.

I told the ward that they needed to call his family immediately, and he needed far stronger medication.

That same young man died peacefully on the same hospital ward, several days later, with the right treatment, and with his loving mum and dad by his side.

But the whole episode shook me very deeply.

Many were very hostile to people with HIV

Back then, not one of 100 cancer hospices in Britain would accept someone with AIDS.

HIV was labelled then (incorrectly) as a virus which was passed only between men who had sex with men. 

And many people were quite hostile to that, as well as afraid of contamination. 

We were only just realizing back then that tens of millions of other infections had already taken place over the previous decade in African nations, spread between men and women,

Some nurses in the UK refused to visit the homes of people with AIDS.  Meals on Wheels were left on the doorstep by people too scared to say hello.

I remember arguing down the phone with a London doctor in the community, who told me he was refusing to prescribe the right medicines for one of his patients at home, because “I an not going to waste government budget on people with HIV”.  

It took me three months to persuade any Hospice to take a single person with HIV.  They were all afraid it would affect their image, that cancer patients and their families would feel uncomfortable or afraid, and that their donations would dry up.

But it wasn’t just care workers who were rejecting people with HIV.

The church was also quite judgmental

At that time, the church was also caught up with finger-pointing and moral debates, and was taking very little practical action in the UK or other nations.   Things have changed a huge amount since then.

I had been just as bad in some ways, finding every excuse not to get involved with this strange new illness.

And then the moment I visited the ward for the first time, I realised how heartless I had been, and how my attitude had to change radically.

HIV is different. Not just in how it spreads, or the way it hides for years before people become seriously ill.

No other illness has provoked such stigma, hostility, anger and fear in so many nations around the world, as well as deep feelings of shame and guilt.

I don’t know any other illness where people still live in fear, get attacked or even killed in some countries because others think they might carry the virus.

A small group of volunteers – then across the world

That young man’s death led directly to a support group starting in our own family home. We trained members of local churches from every type and denomination, to help those with HIV who wished to stay out of hospital.

We also started visiting schools to teach young people about safe living.

Within a few weeks, a rapidly growing ACET team of nurses, social workers and volunteers was providing 24-hour home support across London, and the work in schools spread across the entire UK.

We stepped in to fill the gap that should have been filled by government services, local doctors and nurses.

Today you will find ACET programmes in 15 nations, each managed by local people, meeting local needs in different ways and helping prevent the spread of HIV – just a tiny part of a huge global response by churches and Christian organisations to HIV.

We have seen total attendance of over 3 million young people in schools lessons across the world, and ACET teams have helped tens of thousands in clinics or in their homes, mainly in  the poorest nations.

Many were shocked that we wanted to help

30 years ago, when we started home care in London, most people we looked after identified themselves as gay men.

And many were very surprised that all these Christian volunteers were so willing to help, especially volunteers from evangelical backgrounds, who may have had a rather traditional church perspective on sexual behaviour.

Where perhaps they expected judgmental attitudes, they experienced totally unconditional love, expressed in practical compassion.   People visiting day after day for no financial reward.

Wiping someone’s bottom, helping them get washed or dressed, collecting medicines, driving to the clinic, feeding the cat, washing clothes, cooking a meal, doing the shopping or cleaning the toilet.

Enabling someone to spend precious time at home, often at a time of feeling very vulnerable as well as unwell.

That is why ACET home care referrals grew so rapidly, from the clinics, from lovers or friends of those who were sick and needing practical help to stay at home, as well as from recommendations of those we were already caring for. 

Within a couple of years, ACET had become the largest provider of home care for people with HIV across London.

And the same was happening in Dundee, then in Edinburgh, as our new home care teams expanded across the UK.

In those cities almost all coming to ACET for help were injecting drug users, infected with HIV through sharing needles, in order to inject heroin and other things. 

And once again, many local people were very surprised that Christian people were being so supportive.

Famous just for being there

Day and night, ACET volunteers and staff were visiting people on some of the most deprived inner city estates in Scotland.

Some of these places were regarded as too dangerous for social workers, doctors or nurses, to visit at night without a police escort. We soon became famous among local people for just being willing to be there.

I remember turning up one day with ACET team members to one location in an unmarked grey van – because if we had a logo on the side, neighbours might have quickly realized who we were visiting and why, breaching confidentiality of our patients and maybe risking their lives.

Within minutes ten to fifteen drug users were gathering round to chat, and soon we were in a flat, packed with people living with HIV and drug dependency, often with many complex social issues, housing needs, young babies and so on.

Some people we cared for did not officially exist.  Not on any government records, invisible people below the radar, living in a twilight zone, squatting on floors of friends to sleep at night, constantly on the move, with huge medical and social needs.

And in many other nations where ACET works today, you will hear similar stories; in Zimbabwe, Nigeria, Uganda, DR Congo, India, Thailand, Belarus, Ukraine, Ireland or England….. Cultures may differ, but we find the same heart.

In refugee camps of Northern Uganda, in rape crisis centres of DR Congo, in conflict-weary rural Zimbabwe….our teams remained, and made a difference, when others walked or ran away.

Inspired to make a big difference

Local people inspired by their Christian faith to make a difference to people who are hugely impacted by HIV; inspired also to do all they can to save lives; inspired to help prevent drug dependency; inspired to help prevent teenage pregnancy; and inspired to help young people make healthy decisions without peer pressure.

The good news is that treatments have improved, and more people are getting access to antiviral therapy which means people with HIV can live relatively normal lives for many years.

Prevention works and care prolongs lives by decades

And we know prevention works.  In nation after nation we have seen major falls in numbers of new infections as a result of education, HIV testing and counseling, and good medical care.

For example, in Nigeria and Uganda, ACET teams are helping to find mothers who are infected with HIV so that they can get treated with antivirals to protect their babies. 

As a result, in many villages the percentage of infected babies born to HIV+ mothers has now fallen from around 33% to less than 5%.

This is wonderful news, and shows what can be done when whole communities are mobilized together.

But with 1.8 million adults and babies infected with HIV every year we have much still to do.  4% of the all adults in sub-Saharan Africa are infected, 1% of all 15-49 year olds globally.

Every year a new generation of young people starts to take risks, and older people need constant reminding to stay safe.

And every year, a million or more people living with HIV begin to experience major symptoms needing extra care.

And every year, my wife Sheila and I continue to do all we can to encourage and support these teams in so many nations.

Thank you for helping them all touch so many lives across the world.

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