A very recent study has been met with wide open arms and a big smile by the community of people living with HIV. The study, from the University of Bristol, found that 20-year-olds who started antiretroviral therapy from 2008 onwards are projected to live 10 years longer than those who began the therapy in 1996. Life expectancy is near-normal (78 years old). The sooner after infection that drug therapy is started, the better the prognosis. It is a wonderful, vibrant, life-affirming study, which must enable younger generations to build real lives based on long-life plans instead of fear-driven retreats.
This is still very much a Western and northern European reality, where most people who are HIV positive have access to free healthcare and still unreasonably expensive HIV medications; it is estimated that up to 53% of all people who are HIV positive still have no access to HIV medications. This is an absolute stain on all of our houses, when we have such clear concise evidence that HIV can be halted and a relatively normal life can be led. What will this news mean to someone for whom HIV medication is a distant fantasy controlled by empirical forces – drug companies and the corruption of governments?
But for so many, the news will be the first conclusive time that a definite statement has been released which allows us, the people living with HIV and the people yet to be diagnosed, the luxury of an ordinary lifespan. The luxury of life.
I was diagnosed almost 25 years ago as having AIDS. At that time, most were given this loaded, terrifying and stigmatised label; most were diagnosed late, through the emergence of AIDS-defining conditions such as Kaposi's sarcoma (KS) and Pneumocystis pneumonia (PCP), both quite rare conditions found in people with very weakened immune systems.
Upon diagnosis I was offered bereavement counselling – a chance to talk to someone religious, to come to terms with my then partner’s and my own impending death. We were lapsed to the point of non-existent Catholics, so I declined, and was given a form called a DS1500 which entitled me to death benefits, as I wasn't expected to live longer than six months to a year, perhaps two. The legality of the DS1500 presumed that you would die within the six-month allotted period – and why not think that, then, in a time before antiretroviral drug therapy? AZT (azidothymidine) was around but its dosing unclear, and it killed more than it saved.
It was a time when you were sent back out into the world and lived expecting to die, veiled in secrecy and shame. HIV and AIDS was and still is the singularly most stigmatised illness, condition or death of any on record. It was the illness whose name you dare not say, it was the time of unmarked graves, family shame and calls for criminalisation. For many diagnosed all those years ago, it was a terrifying and isolating time in which you were handed a death sentence and somehow had to make sense of what time you had, often completely alone until you started the descent, on a ward often staffed by some of the most caring people in the NHS. It was a time when many nurses and doctors refused to work near patients who had an HIV or AIDS diagnosis. Dentists were an absolute horror, then, slamming their doors in fear and ignorance – I have never forgiven the profession, very few stood honourably tall, most acquiesced to the rabid mass who demanded that we be shipped off to an island to die.
I had unsafe sex and I was a drug user so I found it easy to blame myself and to live in the shadows. It was easy for me to accept the red cross painted across all my medical notes.
When I was diagnosed, in a cloying lemon-scented room deep in the bowels of the hospital, far away from the mainstream, as HIV units were then, I was handed the gift of a "two-year life cycle". I was told I would die in two years and since that was happening all around me, I assumed it to be true. I became great at living in a two-year cycle.
Two years of commitment to jobs, work, ideas and love. Two years of keeping healthy, staying clean from drugs, being vegetarian, liking fashion, wanting to live in a mountain retreat. Over time, my life cycle extended and I became more adept at being alive, helped by the new drugs that came into being throughout those first 10 to 15 years. But still I felt that I was a visitor on borrowed time. I had long since handed back the DS1500 and started to build structures that pertained more to life than death but I never honestly planned – or had the capacity to plan – long-term. Living two years to two years was and is tiring, and all of my life strategies were based on a "two-year get-out clause". I became flaky.
As the drugs have improved, my treatment regime has worked brilliantly now for years – I have been undetectable for more years than not – and so has my battle to square a sense of security at being alive with the long-term feelings of insecurity that I was expected to die all those years ago.
Reading this news, which I know doesn't entirely apply to me as I have been diagnosed for a long time and there were some years where I wasn't on medication, fills me with an absolute joy. For the first time, someone has told me that I am going to live as long as anyone else.
As I have a quick glance around at my life I realise that I may have bought far too many handbags during my two-year "so who cares" cycles and that, quite possibly, my semi-retirement home in the middle of nowhere in the Andalusian mountains was a tad premature.
I'm alive and it seems, fantastically, that I may be so for many years to come. Look out London, I'm on my way back!