What does it mean to be HIV positive in the UK today? Patrick Strudwick meets four people living with the virus to find out.

We agree to meet outside Pret A Manger on Southampton Row, central London. Waiting in the distance, through the grimy sunlight and the clatter of lawyers, City workers and literary types – all macchiatos and adrenaline – stands a frail-looking figure, bent over and clutching a walking stick. As I approach he smiles. His name is Hugh, he is HIV positive and he is 35 years old. What follows is a story we never hear. It is a tale of seizures and brain cancers, of mental illness short-circuiting anti-HIV medication. It is a story, far from unique, that has been sunk, weights tied to the ankles. Meanwhile, on the surface ripples just one notion: that today in the UK – perhaps the best place in the world to be living with human immunodeficiency virus – HIV is nothing more than a chronic, entirely manageable condition. “It’s all fine now – you just take a pill!” says Chris Sandford, mocking the chorus of voices desperate to convey only the positive about being positive. “I’ve had an MP, a Lord and a GP say this to me in the last month,” adds Chris, who is a patient representative at a London HIV clinic. In April 2014 the HIV-is-fine-now rhetoric reached its mainstream zenith when Dr Max Pemberton, a psychiatrist and columnist, wrote an article in the Spectator entitled ‘As a doctor, I’d rather have HIV than diabetes’ – his rationale being that “for those with HIV, providing they take their medication, there are very few problems”. The story was quoted in Parliament the following month and picked up by media outlets internationally. It topped off several years of headlines in which ‘cures’ were mooted – even predicted to arrive “within months” – and in which “normal life expectancy” was the resounding message.

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Over the last three decades, HIV ‘messaging’, as charities are wont to call it, has swung from black to whitewash: from John Hurt’s booming voice of doom, terrorising the British not to “die of ignorance” in the 1987 television public awareness campaign – complete with the notorious falling tombstone – to today’s trickle of bouncy news stories, each painting HIV as just another condition that medicine has under control. Yet there are more than double the number of new infections in the UK today than there were 20 years ago – and, for the first time, more than 100,000 people living with HIV. Among the statistics are stories far more complex than suggested. These lives, unnoticed, find the virus seeping into wide and unexpected territories: the psychological, social, financial and, as if in direct contradiction of the headlines, the medical. Since 1996, combination therapy – or highly active antiretroviral therapy (HAART) – has indeed transformed the health and lives of HIV-positive people. Deaths have plummeted, and many with HIV lead entirely fulfilling lives, enjoying success at work and in relationships, and having uninfected children. The medication has, for most, lowered their viral load – the amount of virus in the blood – to such a level as to render them effectively uninfectious. If a person is treated early, their life today is such that it would be unrecognisable to someone infected with HIV 20 years ago. Many do just take a pill. But what goes unmentioned are the side-effects, stigma and related conditions either triggered by the virus or ushered in by it. Seismic changes in HIV demographics, in the UK especially, have also gone largely unnoticed. Once an overwhelmingly white, gay and male phenomenon, HIV is now transmitted through heterosexual sex in 48 per cent of cases (compared to 43 per cent through sex between men). Women make up a third of patients receiving specialist HIV care, and black and minority ethnic people nearly half. To capture these complexities, I sought four people whose experiences would reveal the untold story of HIV in the UK today. Their stories uncover a variety of issues, which, while not often seen together in one person, are separately found in many. What emerges is a picture of a uniquely individual condition, one that defies the everything-is-fine-now gloss with which it is now so routinely painted.

Hugh

I guide Hugh to the coffee shop next door. He approaches the steps gingerly, clutching the handrail. Sipping on a latte, he tells me that he contracted HIV in the autumn of 2009 and was diagnosed in March 2010 – a window so small as to provide almost textbook conditions for how soon to begin treating the virus. “It took a little time to get through the mental thing,” he says, with what would emerge as characteristic understatement. “The first couple of weeks wasn’t great – I’ve always had an inclination towards depression.” While fighting in the 2010 general election as a party activist, sofa-surfing with friends – “technically I was homeless” – Hugh was also fighting to come to terms with his diagnosis. With the distraction of the election out of the way, he began to sink. His health deteriorated: regular diarrhoea, a common symptom that emerges soon after infection, irregular vomiting, and periods of not being able to get out of bed and “descending into feelings of worthlessness”. His latent low self-esteem, planted during a childhood in Wales beset by homophobic abuse, was resurrected. By February 2011 his CD4 count – the chief measure of the immune system for HIV-positive people – had nosedived to 200, the point below which doctors in the UK used to dole out another diagnosis: AIDS (they now prefer ‘late-stage HIV infection’). It was time to start combination therapy. His clinic had tried to encourage him to start before, as at diagnosis his CD4 count was already at a potentially perilous 330, but he “kept putting it off” – the subconscious reason for which would only surface many months later. He tried to start the medication but he couldn’t swallow the pills – something he’s always had a problem with, he tells me, shifting in his seat. “My consultant said I could crush them, so I would crush them into ice cream, but they would return a few minutes later. I’d vomit them up.” He also had another worry. “I had a problem with my right eye. It turned out to be retinitis.” Cytomegalovirus retinitis is the leading cause of sight loss in those with advanced HIV. By the time Hugh’s consultant gave him a liquid form of HAART, his depression was already escalating out of reach. “I didn’t take them for two months,” he says with an embarrassed laugh, pushing his short, fair fringe away. “I was spiralling downwards, I thought I was going to die. I had pretty much given up. I thought, ‘What’s the point of taking these meds?’” He booked himself into a hotel in north London. There, he had decided, he would either kill himself or force the medication down. Finally, one thought won through: You can’t give up. He took the pills but it was too late. A few days later he had a seizure. “I woke up in agony, I couldn’t move. My friend took me to hospital.” There, after extensive tests, they discovered that he had two toxoplasmosis lesions in the parietal lobes of his brain, and two tumours at the back. Toxoplasmosis, caused by a parasite that reproduces in felines, is present in up to a third of us, but is kept in check by the immune system. Those with HIV who have CD4 counts below 100 cannot hold back the infection, and it can prove fatal. Before HAART up to 40 per cent of people with AIDS suffered from toxoplasmosis. Hugh’s CD4 count was now 40, a level at which almost any opportunistic infection can invade the body and kill. He spent the next four months in hospital. Within six weeks the toxoplasmosis had been successfully treated, but his brain tumours were confirmed as lymphoma. Patients in the advanced stages of HIV, with a low CD4 count, are more prone to several types of lymphoma than the general population. Chemotherapy was the only option. “And that’s where I came unstuck again,” he says, looking down. Initially, in hospital, he had kept up with taking the antiretrovirals, but they had to be changed in order not to interact with the chemotherapy. He couldn’t swallow the new pills, even by crushing them. Depression grasped him again, and he gave up once more. “At that point, I thought, ‘If I survive, I survive. If I don’t, I don’t.’ I don’t think my friends realised how bad my mental state was.” His doctors arranged for a Macmillan counsellor to come and visit him, and, after several sessions, she transformed his treatment. “I told her that my mother, who died when I was seven, always had a problem taking medication. And she replied, ‘Well maybe your problems with taking medication is a part of your mother you don’t want to give up.’” After initially pooh-poohing the suggestion, Hugh realised she was right and started taking the drugs again. He kept up the treatment, responded well to chemotherapy and had four weeks of radiotherapy, which took three months to recover from. The tumours have been eradicated and he’s still taking the antiretrovirals, but has to live with some sight loss in his right eye and the effects of the seizure triggered by the toxoplasmosis. “The whole of my right side was wiped out. I had to learn how to write again. And I can’t manipulate my ankle muscle,” he says. Despite extensive physiotherapy he has to wear a splint on the joint to support it. “I still have pins and needles in my right arm. I mostly type with my left hand. My specialist says, ‘Keep doing the exercises, but it’s not guaranteed you’ll come back [to normal].’” Hugh is now living with his parents in Pembrokeshire, and is starting to apply for jobs. How does he feel when he hears people say HIV is no longer an issue? “I don’t think it’s helpful,” he says, the restraint returning. His case is emblematic of the perils surrounding medication that HIV-positive patients face – in particular, the dangers of not adhering strictly to an antiretroviral regime. During the last decade, the practice of coming off medication temporarily began to emerge. Some people believe that a break will give their internal organs a rest from processing the pills; others see it as a way of having time out from side-effects. “People saw it as a ‘drug holiday’,” says Ranjababu Kulasegaram, a consultant in genitourinary and HIV medicine at Guy’s and St Thomas’ NHS Foundation Trust, London. “But people don’t so much anymore – they know it’s dangerous.” He cites the SMART (Strategies for Management of Antiretroviral Therapy) study, in which “treatment interruption” was tested to see if it did indeed give internal organs a rest. It was cut short in January 2006 because of the adverse effects on patients. But even with there being clear data opposing treatment interruption, some patients stop their medication altogether.

Ask the expert: HIV and health HIV consultant Ranjababu Kulasegaram on the medical impacts of being HIV positive.

“Fortunately, a small number,” says Kulasegaram. “They don’t believe in taking drugs – it’s partly psychological, social and stigma[-related]. They find it very hard living with HIV and when they get side-effects think, ‘I was fine before I started the drug, now I don’t feel great.’ Some just don’t come back or engage with the [medical] services.” Some stop their medication for religious reasons. A BBC investigation in 2013 found a clutch of pastors in Britain urging HIV-positive members of their congregation to stop HAART and instead “rely on God”. Two years before, a Sky News report found that six patients had died from following such advice. For the most part, however, it is the simple daily act of taking the pills – and in doing so, taking care of one’s health – that is the problem. “It’s to do with self-esteem,” says Chris Sandford, whose work at the Bloomsbury Clinic, London, involves supporting patients’ needs and running courses for the newly diagnosed. “You don’t have to slash your wrists to self-harm. “About two years ago I had a group – a newly diagnosed group – and all 15 people had had suicidal thoughts after diagnosis. You may have had problems before, but it’s exacerbated.” And, as Professor Ian Everall, an expert in HIV psychiatry at the University of Melbourne, points out, rates of depression are dramatically higher among HIV-positive people than the general population.

Ask the expert: HIV and the brain Professor Ian Everall on what being HIV positive can mean for you mentally.

“There have been a number of studies that have compared [this group] with the general population, and major depressive disorder runs at about 7 or 8 per cent, where in [HIV-positive people] it’s more like 30 to 40 per cent. Becoming HIV positive is a large emotional burden, and if people are depressed they are more likely to be noncompliant with medication.” It is not only social factors and stigmatisation fuelling worsening mental health. The virus itself can, on an organic level, affect both how well the brain works, so-called cognitive function, and mood. But for some, the impact of the virus and the medication used to contain it is so devastating that it makes focusing on mental health seem almost a luxury. © Marcel Cowling

Ian

High up in a block of bright, modern flats in Hove, Sussex, lives 67-year-old Ian. He opens the door, invites me in and shuffles back into the living room, before plonking himself down. An extreme loss of body fat has left him wizened and gaunt, with hollowed, empty cheeks. This is just one, visible, problem of many. Ian was among the very first people to be diagnosed with HIV, in early 1984. “I’d already had one Australian friend die,” he says. His partner, from New Zealand, had to go back as his visa ran out. “He was dead within six months,” he adds, with the blank, emotionless tone of someone unable to connect fully with a memory. Ian trained as a chartered accountant and was progressing up the managerial ladder at Unilever as his loved-ones started dying, one by one. “I stopped going to funerals,” he says, as his voice drops to a whisper. “It became too much to bear.” Ian was lucky, comparatively. The virus didn’t start seriously attacking his body until several years later, when longstanding bronchial problems were reignited, prompting a chronic reliance on antibiotics. “Imagine what that’s done to my gut,” he says, wryly. “It’s never really recovered.” But in 1997, aged 50, Ian’s life changed drastically. After a bout of pneumonia in 1995, common in advanced HIV, his doctor advised him to take early retirement, fearful of the effect the stress of work was having on his health. He was also put on the first generation of antiretrovirals. His was a dual therapy: stavudine (d4T) and lamivudine (3TC). Stavudine is rarely prescribed today because it can cause severe loss of body fat (lipoatrophy) or redistribution of it (lipodystrophy), with some patients growing so-called ‘buffalo humps’ of fat on the backs of their necks. Ian simply lost his fat. “It was just falling off me. I lost the fat pad on my feet so walking is painful; on my bum, so sitting on any hard surface is painful; on my face, so I’ve got these holes in my face and you look in the mirror and this terribly sick person looks back at you.” He bends his index finger into a hook shape and places it into an empty cheek. After three years on this combination the fat loss was so pronounced he was offered dermal fillers on the NHS, which he’s been having on and off ever since. They only last a few months, however, and if you’re also still losing weight “you don’t show any of the benefits”. For Ian, this involves over 40 injections into the face. How painful is it? “I’m glad I’ve been to Inferno,” he says, laughing – a reference to the notorious Chicago club night for sadomasochists. But it wasn’t only the lipoatrophy blighting his daily life. The drug combination, he believes, triggered lactose intolerance, so he no longer eats dairy produce. His pancreas also stopped working properly, meaning that he must take an enzyme extract made from pigs with every meal to help digest fats. From 2000 to 2002 his drug combination was changed to didanosine, nevirapine and zidovudine. The first and second of these he says led to liver damage, which was worsened, he states, by the abacavir in his next combination from 2002 to 2005. This, coupled with lopinavir/ritonavir, led to daily diarrhoea, and with tenofovir, to renal failure. The liver damage caused increased blood pressure in the veins to the liver. “This gave rise to my body creating thin-walled veins around the inside of the stomach, particularly around the end of the oesophagus,” says Ian. Because they’re thin-walled, they’re prone to bursting. “You know they’ve burst because you vomit blood or pass it.” On one occasion, in July 2009 at a camp in Denmark, Ian was sat outside in the sun as someone was massaging his shoulders when he suddenly vomited bright red blood. “Think the Little Britain projectile vomit scene,” he says. Onlookers, terrified, called an ambulance. On his return to the UK doctors operated, inserting a mesh tube called a stent so that the “excess blood pressure goes through the tube”. The pancreatic problems triggered type 2 diabetes. Choosing food that’s suitable for his diabetes and digestion is an enormous challenge. A typical day’s intake includes: oat groats, raw sauerkraut, pumpkin seeds, cacao nibs, walnuts and soft-boiled eggs for breakfast; homemade soup with a green salad for lunch; and then chicken thighs with olives and basil (skin and fat removed) and steamed green vegetables for dinner. He also has an underactive thyroid – cause unknown. He weighs just 55 kg. What is daily life like now? “It’s a huge effort just to take a step,” he says with a sigh. “You’re walking as though in quicksand.” It was only a decade ago that Ian started seeing a counsellor to discuss the devastation the virus has unleashed on his life, career, health and mental state. “There were so many layers of the onion that needed addressing. I had to deal with the history but also the reality of today.” There have been periods when, so overwhelmed by his health problems, it’s all he has had to talk about with friends. Relationships have “become a memory” – his last was “somewhere in the Nineties”. How, then, does he feel when he hears people say HIV isn’t a problem any more? He pauses, and delivers his reply at half the normal speed, his tone so weary and biting it is almost unbearable: “How naive they are.” For years Professor Ian Everall has witnessed people diagnosed in the 1980s experiencing a kind of existential crisis, or “demoralisation”, beyond the normal manifestation of depression. “There’s a lot of people from that era who saw most of their friends die, and had prepared themselves for death. They had maxed out their credit cards, and when combination therapy came out and they got well, they thought, ‘What the hell do I do with my life now?’” Premature death may no longer be beckoning for the vast majority, but in 2012 – the most recent year with available data – 490 HIV-positive people died in the UK, two-thirds of whom had been diagnosed late with HIV. And in one group – UK black Africans – more than 60 per cent of people were diagnosed late, compared to a rate of 40 per cent among white British people. © Marcel Cowling

Maluba

Maluba lives in Bristol with her four-year-old son. She is unemployed, a “luke-warm Christian”, speaks loudly and laughs a lot. She was raised in Zambia, but after living in Britain on and off since 1991, she finally settled here in 2006 – 11 years after diagnosis. She contracted HIV in Britain, but was diagnosed in her country of birth. This was a godsend. “If I’d got tested here I probably would have died – the stigma would have killed me,” she says. “When I was in Zambia it wasn’t an issue – everyone is either infected or affected. But when I came here, the so-called First World, I realised how ignorant Brits were about HIV.” Before having her child she would speak publicly about being positive. Now, fearful of the potential fallout for her son, who starts school in September, she no longer uses her real name when speaking publically. “I know people who have been attacked and whose children have been attacked, and this is Britain, not Africa – it’s very scary,” she says. “Middle England is dangerous – middle-class people masquerading as nice, tolerant people, they are the worst. Almost all the stories I have heard where people were attacked have been by middle-class people. A mid-50s, posh [HIV-positive] woman with a teenage son I know, who lives in a nice little village, had her windows done in and her son was bullied. So many stories I have heard first-hand, and to this day – 2014.” The most common offensive reaction Maluba experiences relates not only to her HIV status but also her heritage. “‘Oh, so did you come here for medication?’ No! It’s always a combination of stigma and racism, it’s like, ‘You coming here bringing AIDS.’ That’s why I always tell people where I got infected; it’s a reality check, a slap in the face. [For] a lot of my white friends who have tested positive – women especially – it’s always a big shock because [they think] it’s something that happens to other people: homosexuals, foreigners.” For Maluba, the differences in attitude among African-British people can depend on how long they have lived in Britain – those, she says, who left Africa a long time ago, before attitudes changed and became more tolerant, have continued to perpetuate the shame and stigma. Although disclosing her HIV status to potential sexual partners has largely been okay, she still encounters widespread ignorance, especially from white heterosexual men. “I’ve had to educate them – they haven’t a clue, but African men who’ve lived here a long time can be just as bad.” Becoming pregnant in 2009 wasn’t an issue for Maluba. Positive since 1995 and on medication since 2002, she knew that with an undetectable viral load (the amount of virus in the blood) there was almost no chance of passing HIV on to her baby. “It was a question of when I get pregnant, not if,” she says, adding that her son will “just grow up knowing” about her status. But many women do not have so much time to come to terms with their diagnosis before pregnancy. Thanks to the now routine HIV screening in antenatal clinics, many discover they are pregnant and positive at the same time. This raises many issues – including the future health of the unborn baby, the mother’s health, whether she has other children that need to be tested, and how to tell her partner. As HIV medication can interact with the contraceptive pill, a diagnosis can make it harder for some women to prevent future unwanted pregnancies. Maluba, due to such interactions, has never felt she could use the pill, and so relies solely on condoms. As it is, she has enough medical issues to deal with day to day. “I have high blood pressure; I also have fibromyalgia,” she says, referring to the chronic pain condition, the causes of which are unknown. “I believe fibromyalgia is a result of HIV although there is no way of finding out. I’ve had neuropathy since 2002. And lipodystrophy [from early medication] – it’s something I can’t come to terms with because it’s physical, obvious. A giveaway. I’ve lost fat from my bottom and it’s all gone up, to my tummy, my back, my upper arms. It’s disgusting. It affects what I wear; it affects my confidence. There’s nothing I can do about it.” Between 2004 and 2006 she lost her sense of smell and taste, a commonly reported side-effect of some HIV medication. How then, does she feel when people say it’s fine having HIV now? She laughs suddenly and then stops. “They haven’t a clue. The thing is, my viral load has been undetectable for years, my CD4 is 1,000 [very high]. On paper it looks good, but in reality? It’s shit.” Angelina Namiba, a project manager at the HIV charity Positively UK, who runs a group for pregnant positive women, says it can be hard encouraging African-British women to engage with HIV services, but that it varies a lot. “There’s a common misconception of ‘African people’ [and ‘Africa’] – when it has 54 different countries. You cannot just put these communities together. But a lot of the communities will have seen over the years people dying or getting ill, so HIV can be associated with death, and because one of the ways it can be transmitted is sexually, for many it’s taboo. People don’t even want to talk about it. Some are afraid to be seen where you can access peer support.” “They isolate themselves, end up not getting the help they deserve because they’re hiding – they don’t want anyone to know,” says Maluba. Indeed, finding an African-British HIV-positive woman to speak about her experiences for this article took weeks, compared to white gay men, who came forward almost immediately. These issues are just some of the tough realities lost in a wide assumption that HIV no longer deserves so much of our attention. The problem facing policy makers and charities today, says Ranjababu Kulasegaram, is that improvements in antiretrovirals have “created complacency – people think you take a pill that controls HIV, so if you catch HIV you’re fine. But it’s not as simple as that. There is a risk of drug failure, drug resistance and drug interactions.” Experts agree that the prognosis is good for people who are diagnosed today – if diagnosis happens soon after infection, they have a good CD4 count, and they go on medication early and stick to it. But for those diagnosed late or who, like Hugh, have a low CD4 count, management can be very difficult, says Kulasegaram. “They have more side-effects and drug interactions with other illnesses they have developed during this period – they don’t do well. It will take them longer for them to have an immune recovery [after starting combination therapy]. Some of them don’t make it.” © Marcel Cowling

Mike