4 January 2021

This is a great text book and not because one of CNWL’s psychiatrists, Dr Jose Catalan, is an author but ‘great’ in the sense of the original name for World War I – The Great War; the battle against Aids, HIV, death and dying. And like any war there are casualties, there are structures dug into the ground, the technology and not a few heroes.

The book is built around  53 interviewed participants (patients and staff) talking about the last 40 years, with incredible courage and passion, facing the fear and horror, and fighting the illness.  

“It was emotional, it hardened you and it made many of us more adversarial for the fight, fighting to get drugs tested, evaluated with compassion and ethically … we took our strength from our early failures, from the deaths we remembered and the funerals we did or didn’t go to …”

There are hard hitting emotional pages about the deaths faced and how it changed everyone and shifted – melted - boundaries for all involved. This led onto trauma for some, including staff, “as the 1980s drew to a close the outlook was bleak. More than 13,000 people … had been diagnosed and more than 2,000 had died…”

They say, “suddenly to have young people becoming very sick, very quickly, was a seismic shock, particularly to clinicians and nurses who have been trained to cure rather than primarily to care…”  One staff member recalls,  “the intensity of feeling and involvement in looking after dying patients of the same age as we were led to a real emotional intimacy between you and patients and I think this is partly why it took its toll on us as well. We should have protected ourselves better. But I wouldn’t change it…” 

We know more today about the dangers of traumatisation, recognising the impact of so much exposure to the horror.

The book contains a history of the 40 years of HIV/Aids; a foundry where much best practice was forged –  not only the clinical breakthroughs but also what was called ‘policy from below’ or what would today we’d call ‘co-production’. 

It was the coalition on the ground – the people with HIV, the voluntary sector, clinicians and policy makers that literally changed things – so much so that once HIV had become a non-transmissible condition people missed the specialist services that had been created (but no longer needed) and their sense of loss extended to missing the intensity of common purpose, inspiration, and community. 

“HIV Care became an actual incubator for radical reimagining of health care that elevated patient experience in a way that was without precedent for the state health services”, and, “HIV showed us the importance of telling and sharing in human stories and discussing issues involved, as a vital first step to attracting people’s interest and understanding of the underlying issues and gaining political traction for support.”

There are valuable discussions about the political reaction and truly remarkable clinical response  (the Antiretroviral therapies developed in 1996 brought dramatic falls of at least two thirds by 2010; transmission rates fell from 25.6% in 1993 to less than 0.5% by 2014) bringing,  “psychological and social consequences of unexpected survival..” (“others reacted to HIV by giving up work and enjoying each day as if there were no tomorrow, spending at will knowing that the credit card need never be paid off.”)

Politically, the Government originally brought in regulations allowing for the detention of some people (though never used), prompting one person to say, “there was some … suggestion that we should all be isolated on an island, and quite fancied …Barbados but that wasn’t what they meant…”

The book is also very good on behaviour change – shifting from the stigmatising discussion about sexual orientation (‘gay plague’) to sexual behaviours (condoms, “negotiated safety” and “zero grazing”) to the harm reduction measures like needle exchanges (by 1991, 4 million needles distributed a year.)

But in a comparison with Covid they say, “There hasn’t been an epidemic in human history that has been controlled solely through behaviour change. They’ve all relied upon vaccine, or a cure, or medication.”   And they relate how stigma still disrupts public health, citing the successful South Korean public health covid  response but with test and trace undermined by people giving false identities because of fear of gay discrimination. 

This is a very valuable source book from people who were there. I learned a lot from it.

You can buy the book online.