Dr Steve Taylor’s Blog
In the video above, Dr Steve Taylor offers a message to healthcare professionals for National HIV Testing Week and World AIDS Day.
This post originally appeared on the Huffington Post.
In a front-page headline of this week, the national newspaper The Sun peddled HIV stigma which is out of date in 2015.
In a garish splash designed to attract attention, the paper trumpeted an ‘exclusive’ story about what it called an ‘HIV Hollywood Panic’. According to the front-page details, an ‘A-list star’ has been diagnosed as HIV-positive, which has ‘rocked’ the movie industry; he has a history, the paper shamefully whispers, of ‘womanising’.
The perpetuation of the myth of the anonymous, promiscuous individual punished for their sexual appetite by an HIV diagnosis, and by being shunned by their friends and colleagues, is very sad to see – and entirely divorced from the reality of HIV in 2015.
Saving Lives exists to combat these prejudices, and we have succeeded in placing positive stories about HIV in national media outlets – including The Sun. That’s why it’s so sad to see the newspaper resort to out-dated stereotypes with this ‘story’.
It has taken years for some of the patients I look after and colleagues I work with to be open about their HIV positive status. The Sun, in one sensationalist piece of salacious gossip, has done untold damage to the psyche of hundreds who are beginning to come to terms with their diagnosis.
Coming at the very time we approach National HIV Testing Week, this kind of journalism can have precisely the opposite effect to the one we will be trying to achieve in the awareness-raising we will do in the run-up to World AIDS Day on 1 December.
One in four of those with HIV do not know they are infected. The only way to know your HIV status is to get tested and get a diagnosis. The more people who are diagnosed, the better the health of all of us will be. Our positive ambassadors, and charities like us, work tirelessly to reach a stage where testing and diagnosis have no stigma around them. The Sun is not helping.
We are all hurt by HIV stigma: it dissuades people from testing, and therefore promotes ongoing transmission. It means people present later and to become sicker than they need to be. We should break the cycle by accepting that people diagnosed with HIV today who receive treatment are essentially non infectious and can lead full, long lives. There should be no moralising – by individuals or national newspapers.
This post originally appeared on the Huffington Post.
The Huffington Post last week reported what many would at first glance assume to be excellent news: “For the first time, a legally approved HIV self-testing kit is available to buy in the UK. The BioSURE HIV Self Test will enable people to test themselves when and where they like, with a 99.7% accuracy rate.”
On the same day, and over at the BBC, however, Dr Rosemary Gillespie, chief executive at Terrence Higgins Trust, offered a more nuanced reading of the situation: “We campaigned for a long time to secure the legalisation of HIV self-test kits which happened in April 2014, so it is great to see the first self-test kits being approved. However, it is important to make sure people can get quick access to support when they get their result.”
Home testing for HIV has long been a source of controversy amongst those of us active in the diagnosis and treatment of HIV. There have long been significant and valid concerns that simply popping a testing kit in the post to an individual who may be vulnerable – and a positive HIV result can make anyone feel worried, to say the least – is not providing the support and care for which UK HIV clinics have rightly become world-renowned.
But first, the science bit: the kit, priced at £29.95, works by detecting antibodies – proteins that are made by the body in response to the virus – from in this case a small drop of blood (achieved by pricking a finger and applying it to the testing device). The kit can provide results within 15 minutes. It’s important to note that the kit can only accurately test for antibodies against the virus once they have been produced, and this can take 2-3 months after the time of infection.
Therefore, a negative result may be falsely reassuring if an individual was exposed more recently. So the claims of greater than 99.7% accuracy do have some important time-related caveats. If you are worried about a very recent exposure it’s better and cheaper to take get some professional advice from your local sexual health clinic. Indeed, HIV testing is a complex beast – and that’s one reason that home testing has its opponents.
I’ve written about these issues before. More than two years ago, I wrote in this space that, “people are still transmitting HIV and dying, and any new tool to prevent that has to be good. As doctors, we have to realise we’re not the only ones who can conduct a blood test, and that wider HIV testing of all kinds will save lives.” Nevertheless, the introduction of home testing kits – at last! – must be the moment we pay very close attention indeed to the concerns that revolve around their use … and ensure that we offer the best possible support to anyone who may use them.
The evidence I provided in my previous blog about home testing still stands: surveys in the US demonstrated that a third of people who have never been tested would consider using home testing kits, and would do so within 12 months of their being made available; surveys in the Netherlands showed that people can administer and react to self-testing kits appropriately. Not only that, but 32% of those taking advantage of home sampling with Terrence Higgins Trust had never tested for HIV before.
It’s important to point out about the latter example that sampling isn’t testing – rather, prior to the introduction of home testing kits, what was legal in the UK was the taking samples of blood at home, which were then sent off to a laboratory to be tested – but those figures still speak to the relative eagerness of many to conduct procedures in the safety and privacy of their own home. When one in four of those living with HIV in the UK still do not know they are infected – meaning they cannot access life-saving treatment and may be passing the infection on to others – we have to grasp every tool at our disposal to increase diagnosis rates. Home testing is undoubtedly one of them.
What are the concerns that tell against this apparently irrefutable logic, then? Well, they are important and demand very careful consideration – and continued vigilance on the part of service providers and manufacturers alike. False positives can occur in HIV testing, for instance – your first positive result is never your definitive one. Referring the users of home testing kits directly to local services is therefore crucial: they will require further testing, and they will almost certainly require additional support.
Indeed, the help provided by clinics is very much more than simply clinical. Dealing with the anxieties of people testing and then the psychological reactions of receiving positive or negative tests is what Health Advisors in Sexual Health clinics do best. Professional support administered well at this emotional time is crucial to the effective linkage into treatment and care programs, as well as effective partner notification programs. (Again something the UK does exceptionally well)
The absence of these sorts of services immediately following a positive result is of course a cause for concern – although patients failing fully to access support services is nothing new or exclusive to the home testing kit.
The legalisation of home testing has followed a hugely involved period of debate and consultation which has taken all of these concerns fully into account. The associated regulation will ensure that cowboy manufacturers cannot have access to the market; and the tests do indeed point those who receive a positive test towards the appropriate medical services (you can see what a used test, and the associated instructions, looks like here – our clinical colleague Dr Iain Reeves has filmed himself taking a home test of his own). That is: the home testing kit is a viable, and reliable, option for those individuals who would prefer to take their test in this way.
The most dangerous type of HIV in the UK – contra Nigel Farage – is undiagnosed HIV. Anything, then, that can reduce the number of people living unknowingly with HIV in our country has to be a good thing. As long as there are clear pathways to support and care embedded within the home testing process, we should all support what could well be an important weapon in our continuing fight against onwards transmission of HIV.
This piece originally appeared on the Huffington Post.
Let me answer the question I pose in the title of this post straight away: I think the answer is a most resounding yes. But more of that later ….
“I usually get a lot of retweets, favourites and mentions whenever I put something out on Twitter,” said England under-21s captain and Stoke goalkeeper Jack Butland to me this week. “But whenever I tweet about this, the relative silence is really noticeable.”
Those unresponded-to tweets of Captain Jack’s (cue tip of the hat to Doctor Who) were, of course, about HIV. This past week has been National HIV Testing Week, and Saving Lives has been supporting sexual health services across the country to promote HIV testing and try to drive down the figure which always surprises people when they first hear it: that a quarter of the 110,000 people living with HIV in the UK do not know they have it.
Someone living with undiagnosed HIV will get sicker than they need to be; they have a much lower chance of living a long life; and they may well unknowingly pass on the infection to their partners. That is, the spread of HIV is being enabled by ignorance.
Four years ago to this day, we launched a campaign and a charity with the tag line “HIV TESTING SAVES LIVES”. But unlike other campaigns I had worked on, something was different about this one: it appeared to be more acceptable to the general public.
Why did that campaign work for us when so many others failed to make an impact? I believe the reason was simple: it saw past sex and through to sexual health. It avoided the moralising and judgemental reactions we received every time we dared to mention the S word.
Frustrated by knocking our heads against brick walls year after year we finally appeared to be onto something. Something tangible, a call to action (“Get Tested”) and a promise that, if you responded, you could achieve something (“Save Lives”). A test can extend your own life, and, if you can to get somebody else to take the test, maybe you can save their life, too.
Maybe that’s why at last we have been getting some traction with the wider public. It’s a very fine line, though, and one which we are still feeling our way along.
This year we have had more sports personalities endorse the message that HIV Testing Saves Lives than ever. See our poster: “18 sports stars say HIV Testing Saves Lives” (hi-res download – feel free to print and use!).
Are we starting to see the tide of HIV acceptance change? Maybe. But then again – think back to Jack – maybe not.
That’s why the awareness-raising we and many others have been doing this week is truly crucial in the fight against HIV: because the stigma that surrounds the infection, and that at least one of our celebrity ambassadors has noticed on social media in this last week, drives a reluctance to test which actively promotes the continued spread of HIV.
Figures released in the last few weeks by Public Health England underscore the fact that HIV continues to grow in the UK, and that in many ways it continues to do so silently.
There are a range of prevention strategies that have been proposed, ranging from abstinence (a great favourite of George W Bush) to more widespread condom use (very effective although not consistently employed); from treatment of STIs to circumcision and more recently Pre Exposure Prophylaxis (PrEP). All of these work to a greater or lesser extent, and all have their place. We must have a broad and varied approach to HIV prevention.
However, for me two recent studies are real game-changers for HIV prevention efforts and Treatment As Prevention (or TASP). The snappily-named US study, HPTN 052, established in 2011 that the efficacy of antiretroviral therapy at reducing HIV transmission from the HIV-positive partner to the HIV-negative one was at least 96% in heterosexual couples, but had too few gay couples in it to establish if the same applied to them a higher figure than all of the prevention strategies listed above.
The second study, which has only reported interim data earlier this year, was perhaps even more exciting. The Partner study enrolled couples in discordant relationships (that is, one in which one partner is positive whilst the other is negative), and recorded the numbers of sexual acts, the types of sex, the rate of condom use or otherwise, that occurred over the period of a year.
The entry criteria was that the positive partner had to have an undetectable viral load and be stable on treatment – and, oh they also had to be having unprotected sex (a consensual decision, of course). 767 couples took part in this two-year interim analysis, forty per cent of whom were gay couples. A staggering 28,000 acts of unprotected sex were reported in the heterosexual couples and 16,400 acts of unprotected sex were reported in homosexual couples.
After just over one year of follow-up, guess how many new infections occurred. What do you think? 50? 100? 200?
Well, thus far there have been none. That’s correct: zero. This is not the same as saying transmission cannot occur from a person on treatment. and these are interim data. Nevertheless, these results do go some way to explaining why the majority of new infections in this country are from people who are 1) not on treatment; and 2) unaware of their infection.
So treatment as prevention will almost certainly work. But here’s the rub: it is impossible not to return to that twenty-five per cent figure, that one person in every four living with HIV who simply are not aware that they are already infected. In some communities, the rate of undiagnosed HIV is even higher.
In 2013, 31% of black African heterosexual women and 38% of black African heterosexual men who had HIV were unaware of their infection.
Rates of undiagnosed infection were somewhat lower among heterosexual people of other ethnicities: 27% in men and 23% in women.
Ultimately, treatment will not help the partner of someone with undiagnosed HIV.
It is important, then, that all of us interested in arresting the spread of this virus focus squarely on driving down the number of people who do not know they are infected. How, though, to reach those people who should be taking the test and yet, for whatever reason, are not?
There are many charities and NHS services doing just that, and they do so within different communities and in different ways. But what many of these approaches have in common is the breaking down of barriers, the reduction of stigma and the promotion of an idea that HIV is nothing to be ashamed about.
Entrenched opinions, often backed up by deeply-held cultural assumptions, are not easy to change. It is, however, essential that we challenge them. In one way, this is simple: there are clear messages that correct many of the myths that surround HIV testing.
Anyone can contract HIV. Anyone who has had unprotected sex is at risk.
The test is not painful, and it is not difficult to access: go to your hospital, or a GP, or a confidential sexual health clinic and simply ask for the test.
Just taking the test in no way affects your chances of getting life insurance of a mortgage. (Like any chronic condition, actually having HIV can have an effect – but there are specialist providers who can help.)
HIV has no moral dimension. It is a virus, and it knows no boundaries of class or caste, gender or sexuality. My patients come from all walks of life, and none are defined by their condition.
These messages have the benefit of real clarity. They can be, however, difficult to get heard, as our ambassador found this week. People switch off, assume the message is not for them, or simply do not want to know. But that is precisely where talking about HIV in new ways, via new people, and in new contexts, can help.
Saving Lives has been running a ‘Selfies Saving Lives‘ campaign for National HIV Testing Week, which sees Premiership footballers, famous medics, Olympic medallists, positive people, and members of the public all join forces to take a photograph of themselves holding a card bearing a simple sentence: HIV testing saves lives.
By associating HIV with positive community-building online, with open dialogue and friendly language, and with, yes, the healthy bodies of famous sportspeople, we are attempting to break down the prejudice that unfairly surrounds the virus and those that live with it.
When we place our ambassadors on the sides of buses, half of all those who then attend clinic as a result of our posters report no other exposure to sexual health messaging of any kind. This is absolutely key: reaching new people, getting fresh individuals through the door to take that test.
Only in that way can we diagnose the cases of HIV which are currently going undiagnosed. Only in this way can we prevent the further spread of this still life-threatening virus. And only in this way we can diagnose HIV earlier, and prescribe today’s life-saving medicine when it needs to be taken.
We hope, then, to ensure that next year our ambassador gets a few more retweets for his awareness-raising. Because, put very simply, HIV testing is HIV prevention – and saves lives.
Rodger A et al. HIV transmission risk through condomless sex if HIV+ partner on suppressive ART: PARTNER study. 21st Conference on Retroviruses and Opportunistic Infections, Boston, abstract 153LB, 2014
Saving Lives Positive Ambassador Luke was recently diagnosed with HIV – and spoke this morning on Radio 5 Live with a man who was diagnosed in 1982 about the changing perceptions of HIV. Our Medical Director, Dr Steve Taylor, also appeared, discussing the latest HIV figures issued by Public Health England, next week’s National HIV Testing Week – and, of course, Selfies Saving Lives.
You can listen to the full interview, which was a companion piece to the station’s lead news story every hour throughout breakfast, below.
You can hear more from Luke by visiting his page on our own site here.
Written with Dan Hartland, Director of Operations at the Saving Lives Charity
We launched the HIV awareness charity Saving Lives because we believed that stigma has a real and measurable impact on health. Prejudice impacts upon how people behave, how readily they visit their doctor about a problem, and how effectively medics and charities can communicate about public health issues. As Randy Shilts showed in his justly-famed book And The Band Played On showed, ignorance and misunderstanding can play havoc when dealing with viruses like HIV.
We’ve come a long way since those early days, both in terms of how we test for and treat HIV, and the way in which we speak about it. Charities such as Saving Lives try to promote HIV awareness and challenge HIV related stigma: today, we ask our Ambassadors to talk about HIV in a positive way, encouraging people to test and educating people that HIV can be treated effectively – if it is diagnosed early.
Our Ambassadors explain that modern life-saving treatments can provide long, full lives for those living with HIV. That means being diagnosed is a good thing: the earlier someone can get on treatment the better for their long-term health and, of course, for their partners: people living with HIV who are taking their medication become essentially non-infectious.
That’s what makes Nigel Farage’s comments yesterday in an interview with Newsweek Europe so wrong-headed, depressing and frustrating. Asserting that he and UKIP wish to “control the quantity and quality of people who come”, he singled out one particular group as a good place to start: “people who do not have HIV, to be frank.”
Farage’s ignorance about HIV and those who live with the virus does not, we hope, extend to other elements of his policy platform. The concept that we should single out individuals with a particular medical condition and prevent their entry into the UK is barbarous. It would also be ineffective as policy, as the UN and other organisations agree.
Does he also believe that individuals born and contracting HIV in the UK should be deported?
It is true that 38% of those diagnosed with HIV in the UK last year were born outside of UK. But these undiagnosed individuals would not have been identified by border control – unless Farage is suggesting HIV tests for everyone queuing at passport control?
A travel ban, meanwhile, would simply target those individuals already on treatment. As in the USA prior to the overturning of a similar ban by President Obama in 2009, immigration controls of this sort only enhance the damaging stigma surrounding the condition, dissuading people in the home country and beyond from taking precisely the test that can get them onto effective treatment.
There are 30 million people living with HIV around the world. One hundred thousand of them live in the UK, and they make a hugely positive contribution to our society, across every sphere of activity. Treatment today is more effective than ever and getting cheaper all the time, freeing up people living with HIV to make even greater contributions to our national life – no matter their country of origin.
It’s very simple: ignorance perpetuates stigma and stigma kills. In making the latest in a long series of ill-informed pronouncements, Nigel Farage seems to hark back to a dark period of history which we are all much better off leaving behind.
Maybe Mr Farrage should read our simple guide, What is HIV? He would then realise that it’s public education and HIV testing that Saves Lives.
This piece originally played at the Huffington Post …
I am sitting in my front garden at 5am feeling slightly shell-shocked, wondering what has just happened – and wondering if I am still a doctor.
What a strange opening to a blog. To put my dawn chorus into context, I thought it would be useful to share with you the effects which the Health and Social Care Act are having on our NHS, and how privatisation is taking doctors and nurses away from frontline care, turning valued colleagues into the competition, and potentially jeopardising the fantastic services that we have spent years trying to build.
I’ve not seen a patient in three months! I normally do five clinics a week, and I think I do a pretty good job. In fact, I’m told my patients are missing me. That is comforting. But the reason that I have been away from my post for a quarter of the year is that I have been part of a tender team which is desperately trying to keep our sexual health and HIV service from being sold off and pulled apart.
We are one nurse consultant and two consultants, plus a dedicated NHS manager and a commercial contractor. These five people are the core of our Trust’s bid team. In addition, countless others have given valuable time to try and support our tender. Those of my colleagues who are covering my clinics are also suffering, doubling up without complaint because they know that what we are trying to do aims ultimately to protect our entire service.
It all started in April 2013, when the NHS reorganisation, and the Health and Social Care Act, really put a knife in the back of our specialty. I’m a sexual health doctor and an HIV specialist. And what has happened to my clinical specialism? HIV care is now commissioned by NHS England. Unfortunately the money for sexual health and contraception has meanwhile been given to the city council. Half my team is now paid by one arm of the NHS, and the other half is paid by the local authority (which has financial difficulties of its own).
This means that an integrated, collaborative system that has developed over many years has seen physicians skilled in both sexual health and HIV suddenly finding themselves pushed into a new, possibly private, organisation because they spend more than fifty per cent of their time in sexual health. What is left behind for the HIV service itself? Possibly very little: the private companies don’t want to be concerned with the HIV service … and yet will happily take the lion’s share of its staff once it wins a sexual health contract.
So what happens to the one HIV consultant and one nurse left behind, deemed necessary to look after the patients who have previously enjoyed a much fuller service? Funnily enough, they soon find the new system is not viable. It’s not long, either, before the Trust realises it has lost 80% of the workforce that once looked after its HIV patients to an external contractor uninterested in HIV; and that unless it supports the remaining staff to deliver a service that was delivered seamlessly before, they will have to put the HIV out to tender, too. It is madness.
So let me take you back to 11.54pm one month ago. The five people described above are staring at a computer screen, looking grey, tired and washed-out; drained, exhausted, and waiting to press a button to send a document the size of my PhD thesis to the city council. They are waiting for the council’s consideration, to see whether they might be good enough to deliver a service they have trained all their lives to provide. The reason that they are doing it at all, of course, is that they truly and deeply care about a service they have spent years putting everything into: they care about patients, they care about the NHS, and they don’t want to see their service asset-stripped and cherry-picked, colleagues made redundant and patient care suffering.
The spectre of the fact that our clinical service was going to be tendered out has been around our neck for the last eighteen months. I have lost count of the number of meetings I have had to go to, sitting in a room with countless other people that really should be at work seeing patients, having to act like businesspeople considering the margins on a particular project, and making decisions: to bid or not to bid, and how much money could we loose? It beggars belief.
I’m sure – in fact I know – that in other hospitals in our region there will be a team of equally dedicated people not wanting to lose their jobs or see the services that are just as good as ours dismantled. Whoever wins or loses, the next nine months are going to be just as bad. Staff are going to lose their jobs because the bids that we have had to put in to make ourselves financially competitive means that we will have to lose nurses, outreach workers, and doctors. For the last nine months, we haven’t been replacing staff because of “The Tender”. We don’t know where we’re going to be, we don’t want to invest in staff at such an uncertain time and especially when we have to keep our costs ‘competitive’. The impact is the knock-on effect on staff morale, and an increase in sickness because we are all over-worked.
The public need to know that our NHS is being privatised, not through the back door, but very blatantly through the front. There may as well be very large advertising placards directed at potential providers, promising in twelve-foot type: “If you can do it cheaper – it’s yours.” What about quality? Quality, I’m afraid, is worth only 40% of the total value of the bid. There is something very wrong when the specification for a clinical service is skewed in this direction. It’s not why I became a doctor, and it’s not why my nursing colleagues became nurses.
Why are we having to compete against an army of experienced bid-writers who work on the assumption that maybe one in five of their tenders are successful, and for a company which can invest up to two million pounds into any given ‘tender’ to secure a win? Of course, in truth they are not just working on another ‘tender’: they are playing with crucially important NHS services that deal with some of the most stigmatised, marginalised people in our country. But this is the situation in which we all now find ourselves.
Who will protest, and how? How many people are going to stand up and say, “Yes: I’ve had a sexual health problem, and I was treated with courtesy, respect and compassion in an NHS service which I do not wish to see destroyed”? I suppose not many. A certain circumspection comes with the territory of the speciality we’re in. But I know that our patients truly appreciate the dedication and care that we give them, and I want very much to be able to continue to provide it. The fact that I may not be able to is saddening.
I’ve seen the effects that privatisation can have in other areas of the country – in Milton Keynes, Trafford, Teeside and Leicester. I also know that other colleagues all over the country are currently going through the same nightmare. In fact, it is likely that all of our NHS sexual health services will be put out to tender in the next few years. It is really rather desperate.
After we submitted that bid just before midnight one month ago, we spent four more weeks in what can only be described as purgatory: locked in a room, staring at spreadsheets and wondering whether the hospital could afford to keep us and make the second, ‘best and final’ bid low enough to give us a chance of winning. That process, too, is now finally over. In two months we will learn who our new employers will be.
I’ll let you know how it goes. In the meantime, I am looking forward to being a doctor again.
This piece originally appeared at the Huffington Post …
This blog is definitely not for the faint-hearted: if you’re easily offended, please stop reading now! For those of you who would like to have a greater understanding of a new subculture which is rapidly emerging nationwide and internationally, and fuelling the transmission of STIs, HIV, hepatitis C, however … then please read on.
The story I’m going to tell concerns three individuals, whom we’ll call (with a hat-tip to Mr Tarantino) Mr Pink, Mr Orange and Mr Black. The reason I’m telling these stories is that last week during my HIV clinic, three of my patients were diagnosed with acute viral hepatitis C. This is how it happened.
Mr Orange is a 48-year-old accountant, married with two children. He’s HIV-positive and has been for some years – he’s very well-controlled on his HIV medication with an undetectable viral load and a healthy immune system. As part of his six-monthly check-up, routine blood tests were undertaken … and it is was noted that his liver function numbers were a little awry. Further investigation unexpectedly revealed that he had become positive for hepatitis C antibodies.
Mr Pink, meanwhile, is a 36-year-old professional musician. Exactly the same thing happened to him: on a routine blood screen, his liver function tests were elevated and further screenings revealed that, although he was negative for hepatitis C antibodies, the hepatitis-C virus was detected in his blood. This indicated that he had experienced a very recent infection and his body had simply not yet had chance to generate antibodies.
The pattern continued. Mr Black had been in sexual contact with an individual who was also HIV positive, and who subsequently told him he had recently been diagnosed with hepatitis-C. Mr Black thus attended the sexual health clinic requesting a blood test for hepatitis C. This, too, turned out to be positive.
Classically, hepatitis-C is known as a blood-borne virus. It is very closely associated with intravenous drug use, contaminated blood products, and the use of non-sterilised medical equipment (such as needles and surgical instruments). The chances of it being transmitted sexually have always been described as extremely low – until now.
Over the last year, we have witnessed an outbreak of acute sexually-acquired hepatitis C, predominantly among gay HIV-positive men. This is occurring in every major city across Europe. We need to dig a little further into the current practices of an increasingly prominent subculture to find out what is going on.
It turns out that this outbreak is being driven by a chemical-induced state of disinhibition, hyper-sexuality and boundless energy, provided by either snorting or, latterly, “slamming” (intravenously injecting) recreational drugs. Furthermore, sexual practices associated with significant genital trauma seem part and parcel of this new trend.
Take Mr Orange. He is an everyday kind of guy, whom I guarantee you would not think was into intravenous drug use. But he found himself at a party in which many people were snorting mephedrone, otherwise known as MCAT or meow-meow, a recently banned substance also sometimes referred to as ‘plant food’. This drug is generally snorted, but it is now becoming increasingly the norm amongst certain groups of party-goers to inject or ‘slam’ these drugs: this purportedly provides a greater ‘hit’.
The people using this drug are the not the classic stereotype of a drug user. They are not dishevelled. They are not thieves. They do not sell sex for money. They are often intelligent, employed party-goers who have migrated from snorting drugs to injecting on a recreational basis. This is exactly what happened to Mr Orange. I asked him how he’d found himself in this situation, particularly since he is needle-phobic. He said a friend suggested to him that he should try it, and unfortunately he let that friend inject him with a shared needle.
Hepatitis-C is extremely easily transmitted by shared injecting equipment. It’s therefore not surprising that Mr Orange became infected. Mr Pink, too, recounted a similar tale of partying hard and being involved in the club scene. He also used recreational drugs to fuel his hedonistic weekends. He said he didn’t slam, but that many of his friends and people around him on the club scene were doing it quite openly – and that the practice was spreading from London into Birmingham.
Mr Pink did admit that during one of these drug-fuelled evenings, he had gone to a club with “backrooms” that contained “slings”. Slings, I hear you ask? Imagine a contraption used by stunt men and actors to hold them off the ground, a la Peter Pan or Spider-Man. These particular slings hold the person off the ground, and offer up their nether-regions to individuals who walk by, and who might like to engage in sexual activity. On one particular drug-fuelled evening, he recounted that whilst harnessed into a sling he had had sex with over twenty men. It was during this weekend, perhaps unsurprisingly, that he acquired hepatitis-C.
This brings us onto Mr Black, who attended clinic after being told that the person with whom he’d been sleeping for several months had been diagnosed with hepatitis-C. Sure enough, Mr Black, too, had been infected. He was the third individual whose HIV was well-controlled, who had a healthy immune system, and was holding down a good job; but he too was engaging in recreational drug use and risky sexual practices.
Not wishing to infect anybody else with HIV, Mr Black had decided only to have sex with other individuals who were HIV-positive – an increasingly commonplace practice known as ‘sero-sorting’. For some, a declaration of positivity has become part of their user-profile social networking websites. On these sites, users may declare their sero-status and willingness to ‘play’ with others who are positive.
Sero-sorting has become an approach to reducing the transmission of HIV amongst people who already know they are infected. What people have not realised, however, is the strong potential for infection with a wide range of other STIs: syphilis is now endemic in some groups within the gay population, and is far more easily transmitted than HIV, even through oral sex. Similarly, we need to rethink the dogma that sexual transmission of hepatitis C is a rare event. Instead, we must now realise that the sexual transmission of hepatitis C does occur, ironically particularly amongst gay men who are HIV-positive.
We are now in a situation where chemical sex, or chem-sex, can lead to disinhibitions and multiple, prolonged episodes of sexual contact. This in turn is creating a new mini-epidemic of sexually acquired hepatitis C. More worrying still, perhaps, is that the increasing practice of “slamming” club drugs appears to becoming more acceptable and recreational. It is now becoming more widespread in clubs around the UK and Europe.
It therefore becomes more important than ever that people not only continue to test for HIV – but also other blood-borne viruses such as hepatitis B and C, as well as considering testing for syphilis. We believe that those who are highly sexually active should be having sexual health check-ups on at least a six-monthly basis. Public health messages need to be targeted at those most at risk with some urgency, if we are to stop further spread of hepatitis C within the gay community – and, inevitably, beyond it.
So relatively new a phenomenon does not necessarily call for new messages, however. We must redouble our efforts to persuade everyone that condoms remain the absolute best protection against STIs, and that their use should be non-negotiable and routine. And we must re-emphasise against the crucial importance of education and awareness-raising in helping people understand in a non-judgemental way what STIs are out there, how they are contracted – and, most crucially, how to avoid them.
This piece originally appeared at the Huffington Post …
This week is National HIV Testing Week, leading up to World Aids Day 2013 on 1 December. The question is, how many of you were aware of this – and what can we do to enhance that awareness?
For too long, educational messages about HIV/AIDS, and about the way it is transmitted and prevented, have not been heard. This task is only becoming more difficult in a financial climate in which health promotion budgets are shrinking, and the cost of advertising becomes ever more expensive.
Those of you who are old enough – that is, over the age of thirty-five – will remember thetombstone campaign in 1985. This was a campaign which literally scared the sexually active population into wearing condoms. It had a big effect on stemming the HIV epidemic, and the huge predicted increases did not occur in the UK. How do we know this? Because we saw dramatic reductions in other STIs, notably syphilis – rates of which dropped dramatically – following this campaign.
That was the last major campaign, however, and really there has been nothing since. What that means is that people think HIV has gone away, or is something that only happens in other countries. This is far from the truth: today, there are over 20,000 people living with HIV in the UK who are completely unaware they have the virus. This means they are unknowingly allowing the virus to damage their immune system to a degree which can ultimately lead to death. At the same time, they are also potentially passing the virus on to all those with whom they have sex.
This has to change, in no small part because things have changed: we now have effective treatment for HIV, something which was not the case in 1985. It’s trying to get this important message out to the general public that is now essential. Despite the fact that the AIDS campaigns of the early 1980s were successful in preventing an explosion of the epidemic, they also left a degree of stigma which has encouraged many to believe that HIV and AIDS are something dirty which shouldn’t necessarily be talked about – and perhaps only affects individuals with some moral fault.
Let me reiterate: the reason that HIV has primarily affected homosexual men in the UK and the USA is that the virus was introduced into this population, and this population tends generally not to sleep with women. This is in complete contrast to sub-Saharan Africa, where HIV is a predominantly heterosexual disease and more women are infected than men. Similarly, when the epidemic started amongst intravenous drug users in Spain and Italy, the infection continued to spread amongst the heterosexual population.
But this fundamental misconception that HIV only affects gay men still persists, and still feeds the stigma that surrounds HIV. This stigma doesn’t just exist within the general population, but within specific groups which have been affected by HIV, such as the black African population. In my clinic I see many an African patient who would not dare to reveal their HIV status for fear of castigation, and of rejection from their family and community. This is not helped if preachers continue to propagate the myth that HIV is really only associated with gay people and those with loose morals.
So we have to educate the public about the ways in which HIV is transmitted, and do so in such a way that we can tackle the stigma that is associated with HIV. We need to educate the public that if people are diagnosed early they can be put on life-saving treatment which can give them a normal life expectancy. Furthermore, they need to know that going on antiretroviral treatment can reduce their infectiousness by over 95%, as evidenced by a recent randomised trial.
This is more crucial because there is another side to this coin. People who are unaware of their infection are still dying of HIV and AIDS-related conditions. The medical profession is not testing as they should when patients present with indicator symptoms associated with HIV. Moreover, the general public do not perceive themselves at risk because they do not identify with those groups in which HIV infection rates are seen to be high. It’s worth noting, then, that 25% of all HIV diagnoses come from populations which are not classified as a classic ‘at risk’ group. Testing is for everyone.
How can we educate the public on a mass level in 2013? Both in my own practice and at Saving Lives, we have been working for the last five years trying to engage sportspeople and professional footballers to become involved in campaigning for the normalisation of HIV tests. Only now is this beginning to bear fruit – but what potential it has.
The message is simple: HIV testing saves lives, full stop. The medium is a group of individuals to whom people who would otherwise switch off will instead listen. It doesn’t matter what you have done in the past, you must get yourself tested. In that way, you’ll stay healthy and you can begin to look after you sexual health if you have not done so previously.
I would like at this time, then, to thank publicly the players and ambassadors such as Curtis Davies, Darren Bent, Jack Butland, Nathan Redmond, Karen Carney, Natasha Dowie, Sally Walton, Hannah England, Matt Murray, Carl Froch and many other sporting stars who have helped try and normalise HIV and HIV testing. You may not be aware of it, guys, but when we look at the numbers of people that our messages reach when you tweet and retweet educational messages, the impact you are having is huge. Thank you.
Tweeting, of course, is free. But advertising still has its place. If anyone would like to take advantage of some of our powerful HIV awareness tools, then – to produce anything from humble clinic posters to posters for the sides of buses in your city, as is happening in Birmingham this month – then please contact us.
We’ve done a lot of hard work – and put in the significant investment – to get these ambassadors onboard. All we now ask is that partners find the money locally or nationally to deploy these materials. It’s a cost-sharing, culture-changing model which we hope will empower us all to save lives this National HIV Testing Week.
This post was originally published at Huffington Post:
I write a lot on this blog about attitudes to HIV. In many ways, changing the way in which people think about HIV is now one of the most challenging things we do. We know that our medicines work well, our patient pathways are excellent, and increasingly people with HIV are living long, healthy lives.
But stigma still exists and, although not as bad as in China (another story, another blog) and the UK and USA in the early 1980s, it remains endemic in this country, among all levels of society, and can be really damaging.
The next piece to the HIV puzzle in many ways, then, is about changing public perceptions. Out-of-date and negative attitudes to HIV can dissuade people from testing – and that’s why one in four of those with HIV in the UK are not aware of their status.
That’s a really dangerous statistic. It means there are 25,000 people in the UK alone who are going to get sicker than they need to or indeed die. It also means that people are continuing to infect others with HIV without knowing it. The people who die of HIV in this country today are those who have not been tested – or who have been tested but diagnosed too late for treatment to be successful. Testing really can save lives.
That’s why the recent announcements from the Chief Medical Officer, Dame Sally Davies, are so encouraging. First, the news that those Doctors and dentists living with HIV are no longer to be barred from undertaking certain jobs or procedures in the workplace – dentistry, for instance, or surgery – sends a very strong message .
Not only that, but legislation is now following data – not hysteria or deeply ingrained perceptions and fears.
People living with HIV who are on stable, effective treatment have undetectable levels of virus in their blood. That means the chances of becoming infected by a needle stick injury from an HIV positive healthcare worker on treatment are around the same as being stuck by lightning – essentially it is simply not going to happen.
How effective is treatment at preventing transmission? Extremely. This is a slightly different scenario, but for the purposes of illustration consider for a moment childbirth: a fairly prolonged, bloody experience for the baby. If a mother with HIV has an undetectable viral load at the time of vaginal delivery, however, the chances of her passing on HIV to her baby at the time of birth is less than 0.1%.
Think of the baby as “the patient” for a moment and the mother as the healthcare professional [HCP]. Never in your wildest dreams would any HCP expose any patient to that amount of their own blood, even without the existence of universal safety procedures and gloves.
Again, this is for illustration purposes only – but the stats and facts remain. There have only ever been four documented cases worldwide since the beginning of the epidemic 30 years ago in which an HIV positive healthcare worker infected a patient. Those cases involved individuals in the early days of HIV, before effective treatment was available. Things have moved on.
Lifting the ban on HIV-positive doctors, nurses and dentists tells the public this. It allows our health policy to catch up with scientific fact: you are simply not going to catch HIV from your nurse, dentist or doctor.
In fact, the risk of transmission of HIV from the public to healthcare professionals is infinitely higher than the other way around. As the majority of the population have not been tested, it is the person with undiagnosed HIV and is therefore not on treatment who is truly infectious. That’s why we need to improve testing take-up – to protect all of us from the real danger.
We can combat stigma with gestures and symbols. Role models and educators can change the tone of the debate, which is why we are so grateful to our footballing and sportingadvocates. Advocacy is crucial to tackling prejudice and persuading people that HIV isn’t a dirty secret, but a manageable condition.
But a change in legislation based on robust scientific rationale could just be the tipping point in really trying to change public attitudes.
The more we normalise HIV and HIV testing, the better it will be for everyone. An HIV-positive dentist who has been diagnosed and is on treatment is no threat to anyone. A person with undiagnosed HIV puts their own health in jeopardy as well as that of their sexual partners and healthcare professionals.
So. Let’s test all health care professionals and all patients. That way we may be able to save lives and fight stigma, all at the same time.