As part of the last-ever HIV treatment update, Gus Cairns asked a number of prominent activists, movers and shakers in the world of HIV care and prevention in England about how far we’ve come in the fight against HIV and about the challenges that remain.
The first edition of AIDS treatment update, as it was then, appeared in November 1992, during the worst years of the AIDS crisis in the UK. Yet 1992 also saw the first hints of hope. We still had several years to go before fully fledged combination therapy, but in ATU 1 there is an article about the relatively new idea of combining two drugs and mentioning the Delta trial, the first large scientific trial to show a significant reduction in mortality as a result of this combination – over 40% fewer people died of AIDS in a year if they took AZT (zidovudine, Retrovir) and ddI (didanosine, Videx), as I did for a while. The first issue also mentions nevirapine (Viramune), the first drug of a new class (non-nucleoside reverse transcriptase inhibitors, or NNRTIs), and a set of experimental compounds called TIBOL drugs – which eventually reached the clinic with the licensing of etravirine (Intelence), 15 years later.
HIV treatment now works so well that if people get tested in time and take treatment promptly, and if they manage to avoid other life-shortening habits such as smoking, they can live a normal lifespan (see How much longer have I got?).
Many people, of course, don’t test in time and an HIV diagnosis – often combined with serious illness – remains a profound shock. People still die of AIDS and 40% of people in the world with AIDS even now don’t get treatment.1 But a lot of the problems we talk about now – especially in the resource-rich countries of the world, such as the United Kingdom – are the problems of success.
Are increasing rates of HIV in gay men driven by the perception that HIV is not life-threatening anymore? Will the quality of HIV treatment suffer if it is seen as a common infection that does not need specialists? Do people know less about HIV if it’s less in the public eye? Is this paradoxically exacerbating stigma? Should prevention messages be more consistent and hard-hitting? How do we make HIV prevention more effective in an era of funding cuts? And how will we maintain a joined-together prevention and treatment strategy in a reshaped and part-privatised NHS?
I don’t know the answer to any of these things, so I interviewed three people who might, or who have at least thought about the future of HIV services more than I have. They are:
I interviewed them separately, but since I asked the same questions I have edited their replies together.
I also asked four other prominent people in the HIV sector in England – Lisa Power of the Terrence Higgins Trust, Professor Brian Gazzard of the St Stephen’s AIDS Trust, Winnie Ssanyu-Sseruma of Christian Aid, and Paul Clift, a patient representative on the NHS England HIV Clinical Reference Group – about the story of HIV in the UK: how they feel things have changed over time and what they think the remaining key issues are.
Kevin Fenton (KF): We need behaviour change, of two types. Firstly, we need a behaviour change in HIV prevention providers. There has been a revolution in our understanding of HIV prevention but we need to improve practice and get better outcomes in HIV testing, treatment and prevention. Service commissioners need to understand what high-quality services are actually composed of. Good, honest and impartial research and information is a critical starting point in this.
Secondly – how do we instil and maintain behaviour change in individuals? It’s challenging but not impossible. Sixty per cent of gay men do consistently practise safe sex with casual partners: what can we learn from them? It comes down to the resilience we are able to build in men; to the sort of preparation we give to young gay men, so that they begin to become sexually active within a norm of safer behaviour rather than a para-norm of club drug culture, mental ill-health or other negative realities. We need to understand, invest in and support resilience.
Jane Anderson (JA): We have first-class treatment and care in England, but we need to understand how to extract the maximum prevention potential from it. How do the things that work, work best? The proportion of people with HIV who are on treatment and virally suppressed is now 58% and increasing, but the NHS is now entering a different health economy. This is a huge risk, and it will be a challenge to ensure there continues to be the same continuity of care from prevention campaigns through testing to treatment.
We’ve done a lot of research into how to ensure people don’t transmit HIV. What we don’t know enough about is how to prevent HIV acquisition. We don’t know enough about how to help HIV-negative people stay HIV negative. We don’t know what skills it takes; we don’t know the trigger points for when people let down their guard and get infected. How we find that out and help people remain HIV negative is a very challenging area.
Richard Ma (RM): The biggest challenge is to hardwire into the consciousness of doctors and nurses that this is an infectious disease and that early diagnosis is key. Not everyone has symptoms when infected, but in one study in which they systematically HIV-tested people who had suspected glandular fever, they found quite a high proportion of it was in fact HIV. However, it’s not just about compiling a list of indicator diseases; it’s about making testing for HIV a normal thing to do. One way might simply be to include an HIV test as one of the boxes you have to tick on hospital admission forms; we could do a trial to see if this actually made healthcare workers more likely to test people.
Lisa Power is policy director of the Terrence Higgins Trust.
When the original AIDS treatment update appeared in 1992, I was already very involved in HIV work and activism. Fundraising for HIV was unpopular; the Terrence Higgins Trust (THT – to whom I was then an external adviser on funding) was poorer than the Poor Sisters of Clare. The Red Ribbon had recently been invented as a symbol; already people were arguing over who owned it.
A bunch of gay men resigned from the government’s Health Education Authority because it wasn’t doing enough for gay men, who were over two-thirds of all people who’d been diagnosed so far. THT had independently begun producing new booklets, using real models from the gay scene, which were far more popular and accurate than the government materials, but their stance wasn’t urgent or radical enough for others, who in turn left them to found GMFA [the organisation previously known as Gay Men Fighting AIDS] that year with much more explicit material. There was hot debate over what you could get away with printing; the “angle of dangle”, or how erect a penis was, was a key factor in whether the police might seize materials. GMFA, if they don’t mind me saying so, had the biggest and straightest dicks in town; I never looked at my flatmate (their first model), in quite the same way again.
Family & Youth Concern had produced a schools video that claimed heterosexual transmission was virtually impossible, but oral sex and condoms were dangerous. The Health Secretary had received a report that some health authorities were diverting money for HIV into other areas, and many of them were ignoring local epidemiology to spend it on those less at risk but more politically acceptable. Journalists were hounding Holly Johnson, who they’d heard might have AIDS, but virtually nobody famous was open about their diagnosis and still alive, bar Derek Jarman.
Yet in 1992 we were also on the verge of finding antiretroviral treatment that worked; HIV money was wasted, but there was plenty of it to go round if we could only get a grip on it; groups that squabbled could easily go off and found something else in the knowledge that there were enough volunteers, community spirit and enthusiasm for all.
In 2013, partly because of antiretroviral therapy, we have ten times as many people with HIV but we don’t have ten times the money – or ten times the community involvement.
HIV has become too familiar to some and forgotten by others. We might have hated the government campaigns, but at least something kept the whole country reminded about HIV. There are many things that are better in 2013: people with HIV can live to old age; generics are round the corner and should cut treatment costs considerably; we have far better legal protection for people with HIV in the UK; and the internet has brought peer support a very long way.
But there are far fewer resources and ignorance still cuts deep.
So, in another 20 years’ time, will we be saying farewell to our best-loved HIV websites, as we are now to the well-loved HTU, because something else has come along technologically? Will HIV be so normalised that, like cancer before us, we’ve massively reduced stigma? Will we be using our smartphones to diagnose STIs? Will treatment be a six-monthly implant? Or will inequalities be even greater and the money even more thinly spread?
Whatever the future holds, it’s in all our hands. And if I’m still alive then, which is debatable, I’ll probably still be using the same slogan I clung to in 1992 as my friends died, and I use in 2013 as I try not to cling on to historical mistakes – “Don’t mourn, organise”. History is fine, but only if we learn from it. And, preferably, interfere with it.
KF: We’re going to have to work across organisational boundaries. The sexual health framework from the Department of Health2 certainly sets out useful ambitions to guide us, but HIV demands more from us because of its complexity. Yes, we have a new prevention campaign for England, but how does this link with getting the person through the doors to test, and then through another set of doors to be treated if they test positive? Perhaps most critically for the future, how can we integrate medicine-based prevention, like PrEP [pre-exposure prophylaxis], into this? Although we are still by no means sure of PrEP’s effectiveness, I think we have an obligation to see if it works because so little else does for gay men.
JA: The fact that most HIV testing is now in the grasp of local authorities has some advantages. Taking sexual and reproductive health out of the NHS wasn’t an accident. We now have some geographically based power, at least in areas where enough local politicians are sympathetic towards prioritising sexual health, as they are in my local borough of Hackney. So there is an opportunity there to ensure that services commissioned, including prevention messages, will more closely fit local needs.
Local clinicians have a role here. They can advise local politicians: “Here are the outcomes you need to hit: these are the indicators of whether you are addressing local sexual health needs or not.”
But the huge pressure on local authority budgets may mean that they won’t focus on HIV or, worse, that bringing sexual health into the control of local politicians will politicise it. While they are required to commission local sexual health clinics, they’re under no obligation to mount HIV awareness or testing campaigns. It’s less controversial to encourage wearing seatbelts instead.
There are some sticks built into the system. The local director of public health is there to guide local authorities and they need to adhere to the Public Health Outcomes Framework (PHOF). The new NHS will be outcome-focused and that means you don’t concentrate on things like the number of HIV tests you administer – the outputs – but on real clinical outcomes like changes in the average CD4 count in those diagnosed.
I don’t know how much clout the PHOF will have if local authorities miss their targets, though the Secretary of State retains a power to ensure that public health is equitably addressed. Outcomes are also harder to measure than outputs; there is inevitably a time delay between implementation and outcome. If a local authority is missing its target, will we notice it too late?
RM: Sexual health is back where it was before the NHS, when it was the local VD [venereal disease] service run by the local borough. Politicisation is a real threat, and not just to HIV: local authorities will also be responsible for providing abortions and teenage contraception. However, I do think the PHOF, and even politicisation, can be useful: it is amazing how much pride, not to mention economic advantage, a local authority can derive from having a low teenage pregnancy rate!
JA: We’ll have a national service specification for HIV for the first time, informed by existing service standards such as the BHIVA and MEDFASH ones. The NHS National Commissioning Board (NCB) will delegate commissioning to Programmes of Care (PoCs) that will actually commission specialised services. The PoC that includes HIV, however, also includes cancer and blood disorders; you can bet that if there is any spare money around due to savings when generic [HIV] drugs come in, it may not get ploughed back into HIV services, but into cancer drugs.
Advising the PoCs, though, you have Clinical Reference Groups (CRGs) for each condition. These are potentially powerful bodies; they include patient reps and the chair of the HIV CRG is Simon Barton, clinical director of the largest HIV and sexual health clinic in the UK. Regional reps in the CRG are themselves supported by local groups of physicians – so-called Clinical Senates – who are there to advise them on local issues. There is also a specific national commissioner for HIV, Clare Foreman, who used to head the London Specialised Commissioning Group. Altogether, I think it’s a pretty coherent structure, or should be.
RM: I think one of the problems about the new structure is that the people who will be doing HIV testing won’t witness the clinical benefits of it. Those of us who know about the issues will have to do a lot of gathering, framing and communicating evidence and we have ways to feed into the local agenda. It will be about jostling for attention. I have become an ardent tweeter, following people who matter and making sure they get fed information and evidence about the benefits of good testing and treatment for HIV.
Professor Brian Gazzard is chair of the Department of Health’s Expert Advisory Group on AIDS and research director of the St Stephen’s AIDS Trust.
It must be very unusual for a doctor to see a brand-new disease developing which is almost uniformly fatal and during his working career to see the same disease become a manageable condition with a good chance of people with it living a normal lifespan.
I have given much thought as to why this miracle happened. Firstly, we were very lucky. Had the AIDS epidemic started 20 years earlier, which it might well have done, we would have had little knowledge of retroviruses, of the function of lymphocytes, or had much of a technology to allow such rapid advances in treatment and care.
Secondly, it is a tribute to a National Health Service (NHS) which, despite our impoverished state, remains the envy of much of the developed world. We must ensure that the organisational changes in the NHS do not destroy this.
I am hopeful. During my 30 years as an NHS consultant, we have survived numerous re-organisations and will do so again. I would also like to pay tribute to the voluntary sector and to constructive activism, particularly in the UK and the USA, which has involved some of the brightest minds in pushing new treatments, for care and for a relatively non-prejudicial framework in which treatment and care could be provided.
The revolution in HIV care has been a wonderful example of basic science and the pharmaceutical industry collaborating to produce drugs that attack the virus, though recognition that lifelong treatment needed to be both convenient and tolerable may have been somewhat belated. While not perfect, present treatment does offer relative freedom from serious side-effects for the vast majority.
Many challenges remain. I think there are some glimmers of hope that a preventative vaccine might become available. Personally I think this is a more realistic prospect than a cure for HIV infection, though people would obviously like to be cured of their infection rather than merely controlling it. A cure is an unbelievably difficult and long-term goal – but then I would have said the same thing about treatment in 1983.
When you look at patients on the ward now, the primary problems are patients who come without realising they were HIV positive until a late stage, and a few individuals who cannot tolerate any of the medications available. We need to be much more proactive in involving the social scientists in determining how best to test for HIV at appropriate times and in environments which the patients find acceptable, and also to understand more clearly why some people just cannot tolerate taking medication.
Finally, of course, we should not forget that, despite rapid advances, nearly half the HIV-positive population in the world are denied treatment and some still get drugs with side-effects no longer seen in richer countries. Continuing medical, activist and political advocacy will be needed to continue to make inroads into this epidemic.
RM: Between 2004 and 2012 sexual health could be included in the Quality and Outcomes Framework (QOF) for GPs; sexual health outcomes started to become part of the incentive structure for some GPs. This is no small thing: QOF incentives make up a third of GPs’ income. The scheme expanded from contraception and conception advice to ‘enhanced services’ such as, for instance, a substance misuse service, allowing them to prescribe methadone. They could also bid to run an expanded sexual health service. This was defined nationally in rather vague terms, but in my local area, Islington, a scheme was set up whereby GPs were incentivised to test for HIV and were paid for diagnoses of STIs [sexually transmitted infections], including HIV.
Unfortunately, this particular pilot ended with the new structure, which I think is a shame. The new structure does have illogicalities built in: for instance, the local Clinical Commissioning Groups run abortion services, while the local authorities provide the contraceptives that prevent women having to get abortions.
But in this practice, we still test patients regularly for HIV and have had two diagnoses in the last month. We have diagnosed gay men here but we usually see black Africans as they are less likely to use STI clinics and are more likely to get diagnosed late. The new PHOF [Public Health Outcomes Framework] tells local authorities that reducing late HIV diagnoses is a good thing, but won’t push proactive testing in primary care as it’s not cost-effective. This is a pity: GPs might be good at working with the “won’t-testers” as they may see patients regularly and are very good at exploring health benefits and challenging beliefs.
KF: We have too many undiagnosed people in England and need to get creative in how we offer testing: move outside the clinic and look at community-based testing and home-based testing and sampling. We also need to plan for scale and to manage for scale: we can’t tackle the problem of the undiagnosed by viewing it as a matter of an initiative here, an initiative there. The other thing I’m really committed to doing is to ensure Public Health England begins to pull people together to have a bolder ambition for better HIV and sexual health, especially gay men.
Winnie Ssanyu-Sseruma is senior policy and advocacy officer for community health within the Africa Division at Christian Aid. Back in 1996, she was the first African openly living with HIV in the UK to appear on the cover of a national magazine.
The advances in HIV treatment have fundamentally changed the lives of many people living with HIV and, to a great extent, the global health landscape. In the 1980s, anyone who was known to have HIV not only had a short life expectancy, but many experienced stigma and died horrific deaths.
When I was diagnosed with HIV in 1988, I felt like death wasn’t far off; I was filled with fear, really not living but just going through the motions.
In the 1990s, when combination therapy arrived, there was much-needed hope. Although physically my treatment worked liked a charm, what I didn’t count on was how difficult it was psychologically to shift my mind from wondering when HIV was going to kill me, to living longer with it. Through therapy and other social support I was able to live again.
Twenty-five years on from my initial HIV diagnosis, the last decade has been about supporting others to access the services they need, speaking up and moving from working on HIV at a national level to an international one. I have learnt a lot through HIV activism (not all the learning has been about HIV), enabling me not only to get my life back, but to thrive.
Despite lingering challenges of HIV-related stigma and late diagnosis, I have seen a transformation in attitudes within the African communities in the UK. Some faith leaders have become HIV activists, something seen as close to impossible in many people’s books. Because African and gay communities have been most affected with HIV, it made common sense to work together. I really feel that this partnership has helped to put a dent in homophobia in African communities, although I admit there is still a long way to go.
There are still a few worrying issues. HIV information campaigns and testing levels are nowhere near where they should be. We know that those living with HIV who are not aware [of their status] or not on treatment are more likely to pass on HIV than those on treatment. And there are millions around the world who need treatment now and are unable to access it. But funding levels for anything HIV-specific have declined and HIV support organisations are either cutting back or closing down altogether. The stigma attached to living with HIV is still rife, especially in rural areas – not just in the UK but in various parts of the world.
I am concerned that if there isn’t the same level of investment in HIV globally there might be another HIV epidemic on the horizon. Many funders have now moved on, way too quickly, to funding other health issues. HIV remains an unfinished agenda and, if not dealt with properly, may unleash a second wave of HIV that may be more lethal than what we have been dealing with for the last three decades.
JA: I don’t think we really yet know why healthcare workers are reluctant to test people for HIV. I think it’s something to do with the disease’s psychological and cultural meaning: doctors should be used to giving people bad news, but in this case they feel they lack the skills, which I think is actually a myth. They think they’ll have to be sexuality counsellors or start exploring risk behaviour, but the doctor is the last person who should do that. It’s not their job to ask their patient how they got HIV, it’s their job to inform them they have a medical condition and treat it appropriately. I find once doctors give an HIV test result a few times, they feel skilled again – it becomes incorporated into ‘the things doctors do’.
RM: I think it’s historical. HIV started off as a very specialised and marginalised area that was the province of a few dedicated specialists; some other doctors still see it in that light. The important thing is not to force doctors to work out of their competence but to ensure you have integrated care. In other areas, diabetes, asthma, arthritis, even areas with more social meaning attached like schizophrenia and drink and drug misuse, GPs are quite happy to do the day-to-day management. There’s no reason they couldn’t do this with HIV as long as they had specialists to deal with HIV therapeutics and monitoring.
JA: Everything will depend on the right contracts with the right service specifications. There is nothing wrong as such with, say, Sainsbury’s running your hospital pharmacy, as long as the commissioners have been specific about what they want in advance, HIV specialist pharmacists are included in the tender, and patient reps are consulted and are clear about what they want. It all depends on what people are contracted to do: the same people may be doing the same job but may be subcontracted and managed administratively by a private firm. You need proper clinical governance and auditing, hence the importance of a national service specification for HIV. If you are in a structure where there are a lot of competing providers, they have to deliver the right stuff or they won’t get more contracts. A lot of third-sector providers may actually be more used to operating that way.
Paul Clift is patient representative at King’s College Hospital in south London, and one of the patient representatives on the national HIV Clinical Reference Group.
I was diagnosed with HIV in 1988 and became increasingly involved in the field of activism from the early 1990s following the death of my partner.
What has changed since then? Almost everything, it seems. The main change is in treatments: when I was diagnosed there were no treatments, now there are many. Not only that, the meds we now have are comparatively tolerable and easy to take. That is a very big change, hugely significant, because it means that a well-chosen first regimen can last for many years. I’ve not altered the regimen I started with seven years ago; it still does the trick with no noticeable side-effects.
That means that a person with HIV now has a good chance of living a good life. That is easily the biggest change. It’s now possible to do more than merely exist, more than clock up years of ‘long-term survival’; it’s possible to get out there and achieve things in life.
In terms of current challenges, the privatisation of the NHS is a potential one. The pharmacy at King’s has gone over to Sainsbury’s and the specialist HIV knowledge would have gone if we had not been able to keep it in the HIV outpatient clinic; still many, though not all, patients will have to traipse over to the new generic pharmacy to collect their meds.
As for national commissioning, the government was persuaded to let HIV remain ‘specialist’ and therefore a national rather than local priority, for clinical reasons - but that ‘national and specialist’ designation can change at any time. Also, the Clinical Reference Groups are thinly funded even now and one has to be pretty robust and insistent to get a community voice heard at all in an online virtual meeting.
The biggest change is still in the future, and it’s a change that we’re not prepared for. Thanks to the success of treating Timothy Ray Brown, the man cured of HIV, it is now possible to consider cure as a possibility.
The assumption is that such advances are ‘simply’ good when in fact they are ‘complicatedly’ good. The introduction of ART saw genuine advances in people’s health, but was accompanied by a significant level of mental health problems in people who by then had become massively bereaved by AIDS; the profound depression, with survivor guilt, close to being an acute post-traumatic stress response. None of us saw it coming. It hit some people hard, and continues to do so.
My fear is that when a cure does finally arrive, there will be a rush of people genuinely ready to take it (that’s the ‘simply’ good) but others may or will experience a resurgence of the bereavement-laden depression exacerbated by a failure to come to terms with their position (the ‘complicated’ good). And that raises my deeper question here: how much do we, as activists, really take good care of each other? It seems to me that the arrival of the cure will be less a time for ‘strong’ activism and more a time for ‘kinder, gentler’ activism that celebrates and reflects and also allows time for recovery.
JA: I know of few other treatment areas that have issued such detailed standards describing what good care looks like. Clinical standards are not just there for the benefit of doctors but also for patients, as a collaborative tool. I do worry about patients getting a worse service if we unpick HIV integrated care, but if doctors and patients can work together collaboratively and point out that standards now enshrined in the NHS are not being met, then that is at least a tool for trying to ensure that won’t happen.
KF: In prevention, I think we just have to be really clear from the start about what objectives our intervention, whether it’s a testing pilot or an information campaign, is trying to achieve. Then we learn about whether that resource is meeting its intended objectives as we conduct it. I don’t think in England we’ve done a very good job about evaluation, about continuing to learn as we implement. We have a good toolkit of HIV interventions but there is not enough evaluation and we have to build our knowledge of what we know works. We should also keep our eyes open for new interventions – PrEP, home testing for example – that can help us approach very complex and ‘wicked’ problems in new ways, and commit to evaluating those innovative solutions too.
Edwin J Bernard is a former editor of HIV treatment update, and co-ordinator of the HIV Justice Network.
Some thoughts on the occasion of the final ever issue of HIV treatment update, released today...
I’ve been writing about HIV for more than 25 years, for about as long as I’ve been diagnosed. My earliest articles were about cultural responses to AIDS. It was my own battle with the virus that led me to become a community-based treatment writer and advocate.
During a year-long ‘treatment holiday’ in 1999, as I thirsted for enlightenment about ‘salvage therapy’ options, I devoured scientific and community journals – AIDS treatment update (as it was then known) amongst them. I soon became an ‘expert patient’ collaborating with my HIV clinician to put together the miraculous, experimental combination that brought me, Lazarus-like, back to life.
Ten years ago I became the third editor of AIDS treatment update (ATU), and those experiences informed the early direction of my tenure. I had little inkling that we were at the cusp of a paradigm shift. Today we rarely, if ever, hear the terms, ‘treatment holiday’, ‘expert patient’, ‘salvage therapy’ or ‘Lazarus effect’.
As new and better (if not cheaper) drugs emerged from the pipeline, as a younger generation of people living with HIV and newly diagnosed migrants from high prevalence countries joined us ageing long-term survivors, as changes in the NHS began to threaten the ‘ring-fenced’ HIV sector, the concerns of ATU readers became less medical and more social.
During my five years as editor, we finally understood that HIV treatment not only promised the possibility of a ‘normal’ lifespan, but thanks to the ‘Swiss statement’, it could also be a powerful and empowering prevention tool.
As ATU became HTU, and the focus moved to living (as opposed to surviving) with HIV, the newsletter not only covered HIV treatment but also aspects affecting our quality of life, such as: ageing; improving our mental health; striving for sexual and reproductive health and rights; coping with money problems; and dealing with getting back to work and/or holding down a full-time job.
In October 2003, the same month I took over as editor, Mohammed Dica became the first person in England to be successfully prosecuted for ‘reckless’ HIV transmission. It is particularly ironic that just as we began to ‘normalise’ HIV, and understood more than ever how to prevent new infections, we started to criminalise HIV transmission.
Today, HIV can be a chronic, manageable condition but it is also politicised and stigmatised. It is the stigma of HIV that continues to be our greatest challenge. It affects our relationships with ourselves, our sexual partners, our families, our peers, and with society at large. Here and abroad, HIV-related stigma – and the laws, policies and practices influenced by it – threatens much of what has been achieved for people with HIV but also the promise of an “AIDS-free world”.
It used to be that the best we could be offered was to die with dignity. Now, in order to live with dignity, I'm working to ensure that we fight inappropriate and overly broad laws and policies that regulate, punish and control people with HIV. Our collective future depends on a new generation of activists focused on overcoming stigma – and its associated political apathy – with an evidence-informed, human rights-based approach.
