In conversation with Terrence Higgins Trust Head of Policy, Lisa Power

In the martial language that has often been used to describe the struggle (the fight, the battle) against HIV and Aids, Lisa Power is undoubtedly a veteran, although that term suggests a seriousness that does not correlate with the personality she projects, marked as it is by a self-deprecating and sometimes rather devilish sense of humour.

Currently corporate head of policy for Terrence Higgins Trust (THT), she has been involved in HIV work since the early 1980s. She was helping out on the London Lesbian & Gay Switchboard (just the ‘Gay’ Switchboard back then, she recalls to So So Gay when we visit her in THT’s office near King’s Cross, London) ‘when we started to get the phone calls about this strange gay disease that was happening in New York and San Francisco.’ That was in the earliest days of the epidemic, when people were ‘scared about whether it would come over to the UK, about what was causing it,’ even before it had acquired the name ‘Aids’. ‘It was called GRID – Gay-Related Immune Deficiency – or a number of other things,’ she frowns. ‘Indeed, if someone was trying to be rude it was frequently called the Gay Plague.’ From there, Power began working on what became the National AIDS Helpline – set up by the BBC after the first TV programmes on the subject were broadcast – and then took a role as HIV policy officer for Hackney Local Authority in the mid to late-Eighties. This made her ‘one of the first people employed as, let’s be honest, an Aids bureaucrat,’ as she drily puts it; ‘sat there writing three-year plans for something we didn’t have a clue about.’

At around the same time that Power was beginning to get involved in the issue, THT was founded as an activist charity for gay men, later expanding its remit to tackle all HIV issues and then sexual health more generally. In 1996, effective treatments for HIV/Aids began to be discovered and announced: it was a time of great change, and Power was drawn to THT ‘because they were taking the treatment seriously.’ She says that many other charities played down the significance of those early therapies at that point, calling them ‘complicated’ and ‘toxic’. ‘Basically they were all in denial because they were completely freaked out about stuff happening that they didn’t understand and couldn’t control, and frankly there were an awful lot of people who really enjoyed helping people die,’ she shrugs. THT ‘was one of the few organisations that turned around and said, “We’re going to help people live well.” And that’s why I joined them.’

THT had been started by volunteers operating ‘on the same kind of structure that goes all the way back to the Gay Liberation Front in the early 1970s.’ Power joined when ‘it was just in the middle of transforming into a highly professional, staff-led organisation,’ and watched it go from a team of around fifty, mostly gay and lesbian people, into a much larger and more diverse organisation. ‘In a couple of months’ time I’ll have been here 15 years,’ she points out. ‘That’s half the life of the charity. The reason I’ve stayed here all that time is because we change, we evolve, we meet challenges head-on.’

That evolution has included a vast expansion in the scope of the charity’s work. It now provides ‘a full spectrum of sexual health services,’ offering reproductive health advice, testing and clinical treatment for STIs like gonorrhoea and chlamydia, through to ‘long-term condition management’ for people diagnosed with HIV, which Power describes as ‘the most important and the most dangerous lifelong sexually transmitted infection.’ That means providing ‘services that support people with HIV to live as full a life as possible, given that if you have HIV and go on treatments at the right time you can now live into your seventies in this country.’ One of THT’s most recent innovations is a new website, My HIV, with discussion boards and blogs, ‘which are really important for helping people with HIV to help themselves.’ It is ‘really groundbreaking,’ says Power proudly.

The key to prevention?

Of course, THT still does a lot of work on preventing HIV. ‘One of the things that most infuriates me is that there’s a general narrative at the moment that HIV prevention has failed,’ Power complains. ‘No it hasn’t, because if HIV prevention had failed we’d have an epidemic like Russia or Thailand or China, where it’s out of control.’ She says the UK has ‘a relatively controlled epidemic’, though, and does concede new infection rates are high: ‘There are still people getting HIV who shouldn’t be.’ Is prevention made more difficult by a fundamental tension between prevention messages and efforts to de-stigmatise HIV and make people less afraid of those living with it? Power rejects the idea that there needs to be such a tension. ‘I don’t think telling the truth is stigmatising,’ she reasons. ‘I think we need to… not pussyfoot around, but that doesn’t mean we need to show people smoking guns and the kinds of facial wasting that doesn’t happen anymore with treatments.’ There needs to be a balance, she continues. ‘I think sometimes people are over-sensitive about stigmatisation, but I also think that sometimes people are massively over-gung-ho about thinking, “We’ve got to frighten the crap out of people and then they won’t have unsafe sex.” Sorry – experience says that one seriously doesn’t work!’

Power believes scaremongering campaigns, like the infamous ‘Tombstone’ ad (above), are ‘a blunderbuss’: they perhaps work once by shocking people (the ‘Don’t Die of Ignorance’ campaign resulted in a sharp drop in STI infections), but cynicism soon sets in. Even worse, she warns, they can lead to a backlash. From her time working on the Aids Helpline, she remembers hearing from a little old lady who was terrified her cat would get Aids if it bit a gay man (‘I was like, “what about the gay man?”’), as well as ‘people who were terrified they would get Aids from touching a door handle after a gay man had touched it. Absolutely ridiculous fears. I remember people smashing cups that people they thought might have HIV had used before.’ Conspiracy theories starting springing up, even in reputable forums. ‘You had Andrew Neill, the editor of The Sunday Times, saying that heterosexuals didn’t get HIV,’ she recalls, while others said ‘it was all a government plot to give money to gay men – if only!’

In fact, Power claims the money that was spent on Aids prevention in those days was often badly misdirected. Efforts were aimed at generalised black and minority ethnic work instead of targeting the more deeply affected African communities (‘because nobody dared to say the word, “African”’), or at injecting drug users after the epidemic within that group had already been ‘halted’ in the UK. The lesson to be taken from such mistakes, she argues, is that ‘you need to start channelling the messages towards the people who are genuinely at risk.’ As a result, THT aims its prevention work at African migrants, people living with HIV (‘because onward transmission of HIV is from people who’ve already got it’) and gay men.

Targeting the gay community with HIV prevention messages is vitally important, says Power, because ‘in this country the vast majority of onward transmission is between gay men.’ It is estimated that one in seven gay men on the London gay scene is HIV-positive – presenting a very significant risk of exposure. Yet delivering that message is problematic. Firstly, rather than young gay men, who are more amenable to safer sex campaigns, more new diagnoses are occurring among gay men in their thirties and forties. Those are the people ‘who have been getting HIV messages for years and are inured,’ she explains. ‘They’ve gotten used to taking a certain level of risk and think because they haven’t got it yet they’re not going to get it.’ As a result, ‘we really need new stories and new messages.’

Secondly, and perhaps more worryingly, some gay men resent such targeted prevention efforts. ‘I worry about the attitude to HIV in the gay community,’ Power confesses. She claims THT has been accused of being biased and prejudiced when it has said gay men are at heightened risk. ‘I’ve been called homophobic!’ She sounds incredulous. ‘I don’t think so!’ The fact is, ‘gay men are massively more at risk of onward transmission of HIV than heterosexuals,’ and according to Power a lot of gay men and organisations ‘haven’t come to terms with that.’ She mentions having done work on gay health, and being told by gay groups that they would rather talk about issues other than HIV. ‘But the single biggest threat to gay men’s health in this country is HIV,’ she protests. Smoking, obesity and other public health priorities are important, and gay men have a greater statistical risk of alcohol or recreational drug problems, ‘but those risks are qualitatively massively lower for gay men than the ongoing risk of getting HIV,’ warns Power. And only HIV is permanent. ‘You can recover from alcoholism, you can get skinny – well, I can’t, but most people can. Once you’ve got HIV you’ve got it for the rest of your life.’

She attributes resistance to prevention messaging to a lack of awareness, and believes the best solution is, simply, candour: ‘we need to be honest with people without terrifying them.’ That means telling the truth about what living with HIV is like. With treatments you can live into your seventies, and life’s ambitions can still be realised (‘I know millionaires with HIV now’), but ‘for the rest of your life you’re going to have to work harder to get a normal life, and the odds will be against you all the way.’ Power argues that, ‘effectively, getting HIV is like sticking a millstone around your neck’: people with HIV are, as a group, poorer, less likely to be homeowners and more likely to be unemployed. They have more than twice as many co-morbidities (long-term conditions), and ‘if you get it you’ll spend the rest of your life having to disclose your condition to any sexual partner before you have sex with them; otherwise you’re putting yourself at risk of prosecution if you happen to pass it on to them.’ There is still stigma directed at people with HIV, and the randomness of discrimination troubles her: ‘It doesn’t matter how well balanced you are about it,’ she cautions, ‘somebody else could be prejudiced.’

Power believes continued (even growing) ignorance about HIV transmission causes stigma, not honesty about it. ‘We shouldn’t be lying,’ she asserts. ‘You won’t die with HIV that much prematurely now unless you don’t get it diagnosed for years … but basically you’re making life much harder for yourself: you wouldn’t cut a hand off for the hell of it.’ It is stark language, but she believes it’s necessary to counter the impression that HIV now entails ‘just one pill a day for the rest of your life.’ ‘If you’re lucky it’s one pill a day, if you’re luckyyou’ve got the same length of life as everyone else.’ Things are much better than they used to be, but HIV still has serious consequences, she maintains. ‘HIV is not a death sentence any more, but it is a life sentence.’

Fight for survival

However, the HIV work done by THT and other charities all over Britain is in jeopardy. ‘Just surviving through the next couple of years is going to be an art,’ Power predicts, blaming the economic climate of the last few years and huge cuts to funding coinciding with new government policies on health and social care. She says she has already seen some smaller charities ‘keel over’, with ‘a lot of HIV community organisations thinking, “well, it’s a bit tough now, so we’ll just live off our savings this year and it’ll all be alright next year.”’ But that won’t work, she warns. ‘You’ve got at least two or three years to get through. You can’t live off your savings; you have to transform how you’re providing your services, so that we can try to have as many still viable when we get out the other end of this period.’

To meet the challenge, THT is undergoing a transformation itself. Part of the determination to ensure its survival derives from the conviction that it is (very appropriately for the age) too big to fail. Power speaks of an ‘obligation’ to people across England, Scotland and Wales that springs from the sheer scope of its operations. ‘There are lots of areas of the country where, if we went down, those services wouldn’t exist at all.’ She points out that ‘over the next few years a lot of small local services, and indeed a lot of our face-to-face services, are going to be de-funded.’ So the race is on to restructure and ‘provide as many services as possible from a lower cost base.’ For example, THT is becoming more volunteer-focused again, while attempting to maintain its professional standard and output. ‘Cost-intensive’ face-to-face counselling will be scaled back, and replaced where appropriate with group and online counselling. A lot of THT’s outreach work is already carried out online, ‘because that’s where people are cruising for sex these days’ (although, as So So Gay recently discovered, some of the old haunts are still popular).

Money is a perennial problem for HIV charities, big and small, and the current situation has only worsened it. Power remarks that a large-scale general population sexual health campaign with television and billboard ads costs a minimum of £50 million. By contrast, THT receives £2.5 million for the CHAPS programme, which is supposed to cover the entire country and lacks funding for local work to back it up. Nor have the Coalition’s health and social care policies helped. The Government wants to give responsibility for public health to local authorities – ‘not necessarily a bad thing,’ says Powers, although she worries about it becoming politicised, especially with anti-abortion and pro-abstinence groups gaining influence – but won’t provide a budget that covers everything it’s asking for. According to THT, just providing GUM clinics will eat over 20 per cent of what local authorities will get to cover sex, obesity, smoking and alcohol; leaving little left over for social care and support around sexual health. ‘We don’t believe that anyone’s sat down and done those sums, basically,’ Power avers. ‘Everybody wants local services but they’re not prepared to pay for them.’

‘Localism’ is definitely one of the Government’s favourite health buzzwords at the moment, but it causes problems for HIV services, which work best commissioned at a regional level. ‘You’re not allowed to say ‘regional’ anymore,’ Power complains. ‘You have to say “sub-nationally” or “supra-locally” and nobody can tell what the difference is between the two of them. We’re heading into an era of new NHS jargon.’ Different HIV epidemics require different responses, she explains: ‘HIV in London looks nothing like HIV in Leeds or Lanarkshire.’ However, the Coalition’s policy risks making services too granular. If every GP consortium makes different decisions about what treatments and social care people with HIV should receive, it will be ‘postcode prescribing with an absolute vengeance,’ she warns.

Power does think the Coalition has a genuine commitment to HIV, ‘partly because they have a large number of new gay or pro-gay MPs for whom HIV is something that’s always been an issue.’ She claims she’s talked to Health Secretary Andrew Lansley often enough to know he knows ‘sensible things.’ But the Government hasn’t ‘joined the dots’ between those good intentions and the realities of de-funding across the country, and she theorises that coming into power after years of being in opposition has meant ‘they’ve hardened their hearts and battened down the hatches,’ and not listened to people telling them their plans are causing problems. ‘What’s needed are some decisions based upon common sense and what patients need, and not another load of rhetoric.’

She posits that the health and social care reforms are ‘about putting people through chaos to transform what comes out the other end.’ Chaos would seem to be the operative word at the moment with regard to testing, prevention and treatment of HIV and STIs, as well as support and care for people with HIV. ‘We really don’t know where most of this is going or how the structures are going to work,’ she admits. THT’s contacts in Primary Care Trusts have ‘disappeared’, and new relationships will have to be forged with the GPs who will inevitably take a bigger role. It will have to ‘remake a whole generation of champions for HIV and sexual health in the NHS and local authorities,’ but ‘there are so many players now, and where the response will lie for different things is changing on a near-weekly basis.’ Power gives a wry laugh as she appraises the situation: ‘It’s a combination of wading through seaweed and knitting with fog!’

Overall, the situation sounds bleak. Is it all bad news? ‘It’s never all bad news,’ she reasons cheerfully, ‘or we’d have all slit our throats and gone away long ago!’ She points out once again that treatments can now keep people with HIV alive, and our understanding of it has transformed faster than that of any other similar condition in the history of medicine and health. ‘Every single young person who comes to value themselves and their sexuality, whether it’s gay or straight – that’s a triumph,’ she argues. ‘Every young person who thinks they’re worth looking after and not becoming accidentally pregnant or accidentally infected with an ongoing life-threatening disease, or simply infected with chlamydia and becoming infertile – every single time that doesn’t happen, that’s a triumph. And we have to keep fighting for that.’

Details of how to join and get involved with Terrence Higgins Trust can be found on the THT website.

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