SILENCE = Death was the rallying cry of the Aids activists whose story is told in How To Survive A Plague. But how does such openness help one woman from Glasgow?
1987. T’Pau are at Number One. Hilda Ogden leaves Coronation Street. And a new plague – one for which there is no cure – becomes public enemy number one. Adverts featuring tumbling gravestones and a Grim Reaper emerging from the mist leave a terrified world in no doubt – Aids is a killer.
Several thousand miles across the Atlantic, a group in Greenwich Village, New York – some, but not all of them, diagnosed HIV positive – refuse to be cowed or stigmatised. In the absence of adequate healthcare – and often turned away from hospitals in shame – they become their own pharmacists, clinicians, researchers, lobbyists, drug smugglers. It is the beginning of a nine-year battle to save their lives; they end up saving six million.
One of those people who has lived to thank them is Mandy Lloyd, a bright, funny, 43-year-old chef from Glasgow. We meet in a chain coffee shop in Sauchiehall Street and I identify her from the red ribbon badge on her jacket; otherwise, there is nothing about her that would single her out as HIV positive.
Five years ago, that was far from the case. Plagued by a series of mystery illnesses since returning to Scotland from Lanzarote a few years earlier, she was suffering from colds, night sweats, dry skin, sore throats. She was losing weight fast. Doctors continued giving her antibiotics to treat the infections, but no-one thought of taking a simple blood or saliva test.
“I’d been ill for years,” she says. “When I lived in Lanzarote I had gone private and they just thought I had some form of virus. In the end, the lymph nodes in my groin and under my arm were enlarged – they were about the size of a walnut – and I was referred to hospital for a biopsy. But they refused to do it because of the thrush in my throat.”
It was at that stage that a nurse enquired about her history: had she ever worked abroad, she asked. Taken injected drugs (the answer was no), had sex with Africans or men who might have been bisexual?
“He was travelling with a Four Tops tribute band,” recalls Lloyd, laughing at the irony. “We’d been using condoms – I wasn’t on the pill – and it came off one night and he started freaking out. I just assumed it was because he didn’t want an unplanned pregnancy. Knowing what I know now, he must have been HIV. It all fell into place.”
He went off travelling with the rest of the Tops – she has neither seen nor heard from him since – and she came back to Scotland. The years passed, she got married (the marriage didn’t survive the move back to the UK and her husband returned to Spain) ... then came the diagnosis that was to change her life.
“Telling former partners was the hardest thing,” she says. “One of them is now married with a baby.”
‘Wasn’t considered a risk’
All were remarkably supportive and understanding, and since all also tested negative, the process of elimination led her back to Lanzarote and that one night of unprotected sex with a tribute musician. She was given just a year to live.
“The thing is, I’d been tested in 1992, when I got involved in a new relationship, so it’s not as if I didn’t know about HIV. But when I was having all these illnesses, I just kept thinking, ‘Great, I’m losing loads of weight.’ I really did have that Aids look. I was a size six or something without trying.” She laughs at the memory of it.
“I just wasn’t considered a risk. If I’d been a gay man, a drug user or an African woman they would have offered me a test straight away.”
Ten years after contracting HIV, drugs have stabilised her condition to such an extent that the viral load is undetectable. “When you reach that stage,” she explains, “it stops the HIV from replicating and you are not infectious. I am not a risk.”
She’s about to start a new job and hasn’t, she says, told her new employer she is HIV positive. But she’s far from cagey about the condition. “Employers in the past have been told, purely because it’s something I’m open about. I don’t have a problem with people knowing about it. But there is a stigma that surrounds it. People think you’re going to be off ill. And you have to explain to quite a lot of people. They look at me and say, ‘You don’t look like you’ve got it.’
“They ask, ‘Can I catch it?’ And I say, ‘Yes, you can, but not from me. I know my status.’ It’s the large majority of the population who don’t know who could be infectious.”
That Lloyd and so many others are no longer living under a death sentence – HIV is now classed as a long-term, manageable illness – is largely down to the efforts of that group of Aids activists in 1980s New York, whose actions – out of panic, grief, frustration and determination – are documented in How To Survive A Plague. The film, nominated for a Best Documentary Oscar, is helping remove the stigma that is still attached to HIV nearly 30 years on.
Even some within the HIV community – those who would rather keep a low profile – find Lloyd’s openness difficult to deal with. “I can understand,” says Lloyd. “They’ve had ‘AIDS’ painted on their doors and stuff like that.”
Dating, too, comes with some obvious pitfalls. She had been on specific HIV dating websites but decided to cast the net wider and the response was varied. “There was one guy who was really angry and said, ‘You should have told me before we met.’ But he had kids and should have told me about that too. I think that’s more important.”
Now with a new partner, she insists: “I’m always pretty up front. Not necessarily on the first date. But if I think it’s going to go further, I’m open about it.”
Sometimes she forgets she has it. But it remains a massive part of her life. So much so, she’s given the disease a name. “It is a positive thing,” she says. “It keeps me company. I call it Betsy. Everywhere I go, Betsy’s there.
“The good thing about the diagnosis is that it’s meant I can find out who I am and get to know myself. If it hadn’t happened I would have just been going out, having fun, enjoying myself, but now I’m taking the time to develop myself. I had to get to love the illness, I had to get to love the medication. I had a really horrible relationship with the meds. I was really resentful, really hating them. Every time I had to take them I was reminded of the HIV. And as soon as I started to think more positively, that changed.”
In the meantime, she hopes for a cure. “There are myths,” she says, “of people being cured. A patient in Berlin had leukaemia and he had a stem cell transplant. After that he was tested HIV negative, and there have been at least another three cases like that. So there’s definitely hope, huge hope.”
• How To Survive A Plague is screening at the Cameo, Edinburgh, on 1 December, 4pm, which is World Aids Day (www.surviveaplague.com)