Once Aids was a death sentence. Now it's become a way of life.
Michael Hardwicke plans to marry his partner of nine years next August, on his 40th birthday. By then he will have spent more than half his life with HIV, and the past 11 years on drugs to hold the disease in check.
His story illustrates the dramatic change in the disease within a generation. From a killer infection that cut down millions of young men and women in their prime, HIV/Aids has been transformed into a chronic disease that people live with rather than die from. Someone in their mid-thirties who discovers they are HIV-positive today, the average age of diagnosis in the UK, has a life expectancy of more than 30 years.
But despite 25 years of research, there is still no cure for Aids and no vaccine to prevent it.
One-fifth of the 85,000 people living with HIV in the UK are over 50, and they are expected to age more quickly than healthy people of the same generation. Many live in poverty, on benefits and with no real prospect of supporting themselves, having given up work in the 1990s, thinking they had five or 10 years to live. Stigma around HIV is still widespread, and many need social care and support.
Michael is an example of the new generation of HIV survivors. But he nearly did not make it. "I was 30 when I started treatment in 2000. I was taking 16 pills a day and it was harsh. After two years I stopped, because I was fed up with the side-effects. My partner encouraged me to go back to the doctor, and I was put on another combination. Then I got blisters on my feet so I couldn't walk. They were on my face, too. I ended up in hospital."
He had suffered a severe reaction to the drugs, cured only with high doses of antibiotics. But when he came out of hospital, he was frightened to go back on them. He stayed off them for two years. "I felt OK at the time; I was feeling good. I didn't want to go back into hospital and I didn't want my face to blow up again."
The consequences were serious. Already a thin man, he lost weight and could not put it back on. He always had a cold, and friends remarked how gaunt and drawn he looked. Eventually, one took him to the doctor.
"My doctor told me I should not be here [still alive]. She could not believe my [white blood cell] counts."
Michael now admits that he could have done with professional support, to keep him taking the tablets and looking after his health. "I had support from family and friends but they don't know what is right and wrong with the treatment and medication. I could have gone to my doctor, but it was a frightening time for me. I didn't want to confront her about the drugs and be told off for not taking them."
To help long-term patients such as Michael, the Terrence Higgins Trust, the Aids charity, is launching a programme in January called Life Plus, providing them with one-to-one training in how to manage their illness, combined with online advice and support. Its premise is simple. As HIV/Aids has been transformed over the past two decades into a long-term chronic condition, the expense of caring for its victims has soared. Lifetime costs are estimated at between £280,000 and £360,000, and the best way of holding costs down is to keep patients well.
Paul Ward, trust deputy chief executive, said: "By educating patients about their condition it helps to reduce health-care needs. It will help doctors and nurses to maximise the amount of time they spend on the highest level of clinical need. It will be run by people with HIV who bring a rich seam of personal knowledge."
The programme was developed in partnership with the Elton John Aids Foundation. "We had been through an extensive analysis of what was happening in the UK," said Anne Aslett, its executive director. "We spoke to many HIV-positive people, clinicians, nurses and health trainers. What was clear was that when you have a lifelong condition, medical care is only half the story. How you are living your life is as important."
The programme is also exciting interest for its potential in other chronic conditions such as asthma, diabetes and Alzheimer's. The burden of chronic disease is growing in all developed nations, and finding ways to help patients and their carers to help themselves and ease the pressure on state-run services is the biggest challenge facing policymakers.
Mr Ward said someone suffering side-effects similar to Michael's will be able to check the Life Plus website anonymously, and find advice on how to deal with them, such as changing the time to take the tablets or avoiding high-fat food. Health trainers will also be available in London, Glasgow, Manchester, Birmingham, Cardiff and Brighton for face-to-face, in-depth sessions, and users will be put in touch with online self-help support groups.
Ms Aslett said: "What's great about Life Plus is that it supports newly diagnosed patients in clinics when they need help to navigate a whole new world of medical care, then graduates to phone and online support as people stabilise. It allows them to feel in control of their treatment and their condition, which is vital when a condition is part of the rest of your life."
Michael has finally learnt his lesson and his condition is now stable and under control. But the outcome could have been very different. "My doctor put me on a third drug regime. She warned me I was in the Last Chance Saloon. It made me realise I had to stay on it and deal with any side-effects. It has been brilliant; it brought me back from death's door. The problem on the web is that you sometimes get conflicting information, so what we need is one website we can trust. I can't understand why this was not thought of years ago."
Maman Nicole's story: Democratic Republic of Congo
Maman Nicole, one of the women helped by Fondation Femmes Plus, a charity for HIV-positive women, says: 'I've known I was HIV positive since 1993. When my husband died of Aids my family rejected me. There's only the two of us here now, at Femmes Plus. When another, Chantal, died, we buried her. The street kids who live in the cemetery called out: 'How long have women had to bury the dead?' They ran over, pushed us aside and took the coffin on their shoulders. They had tears in their eyes."
Elton's Heroes: #2 Peter Tatchell
For 30 years Peter Tatchell has been a conspicuous and full-time member of the awkward squad.
The list of his crusades is a daunting one. He campaigns against imperialism, the Israeli occupation, Islamists and homophobic blood-donation restrictions, and campaigns for animal rights and, rather unexpectedly, the independence of Cornwall.
But he is best known for his campaigning in favour of gay rights worldwide. His commitment to this cause has shown tremendous bravery. Visiting Moscow in support of Gay Pride in 2007, he was assaulted and nearly knocked unconscious by thugs, and returning in 2009 was arrested by the police in response to a peaceful protest. Attempting a citizen's arrest on Robert Mugabe in Brussels in 2001 on the grounds of human rights abuses, he was savagely beaten by Mugabe's bodyguards.
If Tatchell sees what he perceives to be wrongdoing he will act to expose it. He, and other members of the campaigning group Outrage! invaded the pulpit of the Archbishop of Canterbury, mid-sermon, on Easter Day in 1998. Other people's liberal pieties might prevent them from denouncing the grossly homophobic sentiments of Jamaican dancehall music, a former Chief Rabbi, or strands of Islamic thought. Tatchell never had any hesitation in drawing attention to what he saw as wrongs.
Tatchell's insistence on the right of gay people to have public sex in parks and lavatories has often infuriated. Reasonable demands of previous years, such as an equal age of consent and the right to serve in the military, have often been conflated with dangerous, cranky and even bizarre ones, such as his current campaign to allow heterosexuals to enter into civil partnerships.
But the fact remains that polite negotiation behind closed doors would never have achieved the huge changes of the past 15 years.
Without the awkward squad, society would never alter. He is never going to be a national treasure but we couldn't do without him.
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