Almost half of new cases are gay or bisexual males
Up to 10,000 unaware of their infection, says study
The number of gay men being diagnosed with HIV has reached a record high in the UK, according to the Health Protection Agency (HPA).
One in 20 gay men and men who occasionally have sex with men are HIV positive in the UK – and in London, the ratio is as high as one in 12. Part of the reason for the observed rise is increased testing, but, says the HPA, it is also clear that too many men are unaware that they have HIV and are unknowingly infecting others.
“About 8,000 to 10,000 gay men are HIV positive and unaware of their status,” said Dr Valerie Delpech, the HPA’s head of HIV surveillance.
According to the HPA’s annual report, released on Thursday in advance of World Aids Day on Saturday, 3,010 men who have sex with men were newly diagnosed with HIV in 2011 – 47.9% of all new diagnoses in the UK. The numbers have remained high since 2007.
Men who have tested positive and been put on drug treatment, which can keep them healthy and give them a normal lifespan, are unlikely to be infectious. Trials have shown that treatment has a role to play in preventing the spread of the epidemic – the drugs reduce the levels of virus in somebody with HIV to such a low level that they are unlikely to transmit the infection to a sexual partner.
The HPA and organisations for those diagnosed with HIV are all advocating regular testing for anybody at risk. Gay men and other men who have sex with men should take an annual test, they say – and if they have new or casual partners, they should be tested every three months.
Living a long and healthy life with HIV depends on starting treatment early. “People are still starting late: they are infected for three to five years before they are diagnosed,” said Delpech. People who are diagnosed as HIV positive late are at 10 times the risk of dying within a year of discovering they have the infection. They are also more likely to infect people while they remain unaware of their status.
The black African community in Britain also faces a higher risk than average, with 37 out of every 1,000 living with HIV last year. Far more men and women in the black African community are diagnosed late than gay men – 68% and 61% respectively, compared with 35%.
The HPA is recommending safe-sex programmes promoting condom use and annual HIV testing as a priority for this community as well as for men who have sex with men. They want NHS clinicians to take every opportunity to offer testing to those at higher risk.
The total number of people in the UK living with HIV climbs steadily every year because treatment is keeping more people alive. Including both diagnosed and undiagnosed cases, it has now reached 96,000, with a total of 6,280 new diagnoses in 2011.
Nearly half of all new diagnoses were acquired heterosexually. More than half of all new UK infections were acquired while the subject was in Britain, compared with 27% in 2002: the small drop in new infections last year, from 6,400 in 2010 to 6,280 last year, was because of the drop in the number of people who had been infected abroad.
Deborah Jack, chief executive of the National Aids Trust, said: “What is striking about the HPA’s data is how it really shows both our successes and our shortcomings in tackling HIV in the UK. On the one hand, we can hail treatment as a real success story. Treatment is effective, people diagnosed with HIV can access it easily and it is working in keeping the virus under control.
“However, when it comes to increasing the uptake of testing – the gateway to treatment – our services are patchy, inconsistent and ultimately we are still failing to make any significant headway in tackling the high rates of undiagnosed HIV.
“A quarter of people living with HIV are unaware they have the virus. As long as this figure remains high, new infections will continue to occur. We must increase our efforts in encouraging people to test and making sure that the health service is taking advantage of every single avenue in offering an opportunity to test – something that isn’t happening at the moment.”
Sir Nick Partridge, the chief executive of the HIV/Aids charity the Terrence Higgins Trust, spoke up for safe sex and said that testing could add 40 years to a person’s life. “HIV is an entirely preventable condition, yet each year we see thousands more people across the UK receive this life-changing diagnosis,” he said. “While there is still no cure and no vaccine, that doesn’t mean we need to accept its continuing march.”
That removal of charges for undocumented migrants and non-UK citizens accessing HIV treatment and care in England comes into effect today. From now on, HIV treatment will be provided free of charge to all who need it, regardless of citizenship or immigration status.
The move was first announced in February and the relevant legislation passed in June. Health ministers have justified the change on the grounds of public health, pointing to the impact that HIV treatment has on onward transmission.
Although it was initially proposed that free HIV treatment should only be available to people who have been living in the UK for more than six months, this requirement has not been retained in the legislation.
While treatment in HIV clinics will always be free of charge, migrants living with HIV who need hospital treatment for another health condition, such as diabetes, heart disease or cancer, or who require antenatal care, may still be subject to charging regulations.
Moreover, the rules have only changed in England. In Scotland and Wales, although charges for HIV treatment have not been levied or actively pursued in recent years, the legislation still states that HIV treatment may be chargeable. In Northern Ireland, the legislation still states that HIV treatment may be chargeable, and these regulations have sometimes been rigorously enforced.
The National AIDS Trust (NAT) has called for a formal change in the law in Scotland, Wales and Northern Ireland, to ensure that free universal access to HIV treatment is guaranteed across the UK.
We often talk about prejudice and stigma relating to HIV / AIDS, and in everything we do, attempt to combat this stigma. Not enough people stand out, and sometimes those that do, speak about stigma on a grand scale. Coming up, Rich Juzwiak, an editor at Gawker has posted a wonderful, honest and frank article about understanding the nature of HIV in the context of sex between men from a presumed HIV negative viewpoint.
What is particularly noteworthy is Rich’s unbiased honesty and openness throughout his article. By asking the right questions to people he is meeting for sex (or not) he’s gained a much improved understanding of viral load, and the risk factors involved when meeting people for sex. Sharing his experiences not only provides an education and insight to HIV negative people, but also informs HIV positive people just how little knowledge there is on viral load and transmission.
In addition to the work of organisations like LASS, the Terrence Higgins Trust, the National AIDS Trust and many, many more, the real advocates are the people (regardless of HIV status) who ask questions, understand what’s going on and share their knowledge to the wider public so we can all know our HIV status and enjoy shared companionship whether that intimacy is based on sex, or conversation.
(Would you like to listen to this article instead? Click the play button below…)
The first guy I ever turned down on Grindr for having HIV, my patient zero if you will, is all kinds of hot: hot in the face, hot in the body and hotheaded. In May, he asked me to come over and make out. We chatted a little bit more, he told me about his status and I slipped out of the conversation, just like that. Randomly in July, I noticed him at a movie theater: On Grindr and online, people lie with pictures all the time, choosing ones that distort their appearance in a captured second, but I was able to pick Miguel right out of a crowd. His picture is a symbol of habitual honesty, maybe, but also because he’s so attractive, he has no reason to lie.
“This always happens: someone will feel bad and then they’ll see me out and they’ll be like, ‘Oh my god, you’re so fucking hot,'” Miguel told me while we waited for our table outside of a Chelsea brunch spot one Saturday in early July after I reconnected and asked him to talk to me.
Miguel told me that being turned down for sex because he’s HIV-positive is something that happens “all the time,” and that “almost every time, the minute someone gets to know me, their mind changes.” Exposure to a gay friend often converts homophobes swiftly; the same can be said of an HIV-positive guy meeting others who are fearful. It’s somewhat reassuring that that’s all it takes in many cases, but it also underlines the exponential burden put upon positive guys. They are either in a constant state of proving themselves socially or they are sitting on a secret.
As a gay man in New York with an active, multiple-partner sex life, the chances are that I have hooked up with an HIV-positive guy or five and didn’t know it. Maybe I didn’t know it because he didn’t know it. Maybe I didn’t know it because he was a liar. Maybe I didn’t ask.
Granted, I generally play it safe, keeping fluid exchange at a minimum, using condoms, opting for oral over anal almost every time, and especially with strangers. (Although, as we are coming to realize, oral sex maybe isn’t as safe as we’d like it to be). Even with that in mind, getting tested is never less than horrifying, no matter how regularly I do it. There have been times, especially after suffering from a weird flu-like bug that no one else around me seemed to contract, that I have been sure that I would test positive.
I haven’t yet. I think I’m HIV negative, but since the virus can take three months to show up in blood, I can’t really be sure. In fact, none of us who are sexually active can be sure – except for those who are HIV positive.
Therein lies the hypocrisy in turning down a potential hookup who a) knows his status, and b) is honest about it in favor of one who doesn’t or is lying about it. That kind of discrimination is motivated by fear of the known while taking an agnostic approach to the unknown. It’s especially foolhardy considering that guys who know they are HIV-positive tend to be healthier and with lower viral loads than guys who don’t know they have it and are going untreated. The kind of optimism that assumes someone’s word is as good as a hard copy of a test result is potentially life-altering.
And yet, I’ve turned down guys who are open about their positive status. I watched the onset of AIDS in the ‘80s through the confused eyes of a child. I had it drilled into me that this was a disease to stay far, far away from. I also know better than to sleep with someone who announces himself as HIV positive. Or knew. Now I’m not exactly sure what to think. I feel guilty and scared, but not necessarily in that order.
I forgot to ask Giovanni* his status on Grindr before he came over. I remembered once he was inside of my apartment, discovered that he was HIV positive and asked if he’d like to be interviewed instead of hooking up. He agreed.
One of the first things we talked about was what complicates the situation the most: The widely held idea (at least among the HIV-positive guys I talked to for this story) that antiretroviral medication, which reduces the amount of HIV in a person’s blood to undetectable levels, is a contagion cure-all. That is to say that many people believe that it is virtually impossible for guys who identify as “poz but undetectable” to transmit HIV to a sex partner.
“I feel a little bit discriminated against just because if someone is taking care of themselves, there’s no risk on it, unless you have cuts or you’re bleeding,” Giovanni said. “But even then, you have to have a high viral load. If your status is undetectable, it’s very rare that someone else can catch from sucking.”
Giovanni contracted HIV about three years ago from his boyfriend who lied to him about his status: His partner said he was negative, they repeatedly had bareback sex, it turned out his partner was positive and it destroyed their relationship. “I blame myself,” he told me. His regard of personal responsibility is also present in his current philosophy regarding disclosure. If he’s not asked directly, he doesn’t open up about his HIV status.
“There are people that never ask me about my status, so I just go and assume that they have it,” he told me. “If you don’t ask me, I assume something’s wrong with you.”
I found this point of view disturbing, but most of what else Giovanni said was endearing. He told me that he empathizes with the people who are too scared to hook up with him and who turn him down: “I was there before it happened to me…I know how a person feels. When someone says you’re positive, your world changes.”
And so does the world of the person who has it. “It’s not hard to find somebody that accepts me the way that I am, but I don’t know…” he trailed off.
Before he left, I gave Giovanni a big hug. We were intimate and raw and we never took our clothes off. We talked about staying in touch and getting together again soon but it never ended up happening.
In early June, I lost interest in Chad when he told me he was “poz/undetectable” on Grindr. I didn’t respond to something he said, and 10 minutes later we shared this exchange:
Chad: Haha is that a no? I can take it 🙂 Me: It’s so weird, the situation. I don’t want to seem like a dick or discriminate. You know? Chad: People discriminate all the time. But if u think I would put you at risk, I disagree. And guys think honesty makes things more dangerous. Me: Tell me more about how it wouldn’t put me at risk. Chad: Safe sex with an undetectable guy has no real risk, never been a documented case of transmission. But if you’re feeling spooked it’s no fun for either person ;). Xx. Me: I need to do more research. I didn’t know that. Chad: Take care.
I attempted to engage Chad again and he didn’t respond, not that I blamed him. In July, though, we met face-to-face through a mutual friend. I already knew who he was the second I set eyes on him from afar. From there we resumed communication and I’m glad: he’s attractive with intellect balanced out by an easygoing attitude. He’s exactly the kind of guy I want to be around. He’s also an AIDS activist, and thus particularly informed on the matter at hand.
“Lack of communication and lack of conversation around HIV is a big issue,” he said when I asked him about anti-HIV discrimination. “You have this turning point where the drugs start working well enough so that people won’t be outed by their physical appearance and then talking about HIV becomes a choice. Gay people were very tired of being associated with HIV and AIDS and it just kind of went underground. That’s the birthplace of the stigma. As soon as it became something you could disguise or put away, then it became a question of character.”
Chad’s activism doesn’t turn off when he logs onto Grindr. He says he regularly schools people on the app, as he did with me. He makes education sound like foreplay: he says the type of guys he’d be attracted to anyway are those who are knowledgeable on the subject or willing to learn. He told me that based on the information at hand, he can do “basically everything” in bed, just as long as he’s safe about it.
We talked a little bit about the rejection he’s faced from others like me, which sounds more patience-testing than soul-crushing. He bemoaned guys who “just go totally cold” and make things awkward when he reveals his status in person when he picks them up IRL (he says he always tells people in advance of meeting them if they initially connect online). “If you’re uncomfortable, fine. But communicate. It’s not the end of the world and you’re certainly not going to hurt my feelings. But it’s annoying to go through this beat-around-the-bush rejection process,” he told me.
I wondered about the other extreme: guys unafraid of having unsafe sex with him. He says he’s only experienced a “handful” of these, most of them “dedicated pigs who value raw butt sex.” Whether he would appease them depends on the dude.
Toward the end of our conversation, I apologized to Chad for brushing him off. He told me it was nothing, a blip in his life.
“If the situation presented itself again, you think the guy’s attractive and you’re still not comfortable, what do you say?” he asked, testing my apology.
I stammered and then finally: “It would depend on the level of attraction. But I don’t think I’m a firm no.”
“You’re weak now?” he asked, grinning.
There is an East vs. West Coast divide on attitudes about HIV positive guys, or so I hear from a new friend, Eddie, who I recently met through other friends. A resident of San Francisco, Eddie told me that uptightness or reluctance on this issue is something he’s only experienced on the East Coast.
“People in San Francisco especially, but on the West Coast [generally], as soon as you say you’re undetectable, it becomes like a free pass,” he explained. “‘Oh, you’re undetectable, and the risk is so minimal, and I’m a top and you’re a bottom, and that’s even less of a risk.’ I’m like, ‘I guess?’ I’m not willing to take that risk.”
He told me that when he was in the gay mecca of Provincetown, Mass., last year, he found himself in a group that was ridiculing someone they knew who was recently diagnosed. That pissed him off, and he told them as much. “On the East Coast, [contracting HIV is considered] your fault, on the West Coast, it’s, ‘That could be me, and so I understand where you’re coming from.'”
Eddie says his experiences with HIV hookups have been “80 percent positive, 20 percent negative.” He was diagnosed in 2003 and says it was “probably the hardest thing I’ve ever dealt with.” It may seem unlikely, but sex ended up being therapeutic for him:
“When I started [dating and hooking up], and it wasn’t a big deal for other people, that really helped me. It really helped me realize that I can incorporate it into my identity.”
Eddie’s own journey to comfort exposes the contradictory cultural status HIV has right now: it’s both no big deal and a huge deal. It’s no big deal because the drugs that make HIV undetectable in blood have largely converted the disease into a manageable inconvenience. For many, it is not the death sentence it was. But for others it is: drugs are expensive and the high cost means that every minute, four people die of AIDS-related illness (as related in David France’s upcoming documentary How to Survive a Plague). The drugs can also have debilitating side effects, diminishing the quality of the life they are also saving. A relaxed, non-stigmatizing attitude is a nice thing for the world but complacency with a plague that continues to rage on is not.
Eddie said he understands his risk of transmission to be incredibly low. “I’ve dated people, and we’ve had unprotected sex, and we haven’t transmitted it. But, that’s in a different context than just hooking up with somebody, because you have that conversation and you make those decisions together,” he told me.
Eddie said he feels more discriminated against than stigmatized and pointed to the number of ways gay men can be socially awful to each other. “I think there are plenty of places where the gay community hurts itself—whether it’s through race, or class, or internalized homophobia. And also with HIV status.”
All of this is great and enlightening and galvanizing, but I still wasn’t sure about the information I was receiving. I know that part of taking care of yourself as an HIV positive individual involves educating yourself, and I have faith that these guys know their shit – much more than I did, at least. But the information that all of them hold true – that hooking up with a guy who is positive but undetectable will almost never or actually never result in the infection of a negative individual – it behooves them to hold true. Because they profess to be ethical people, they wouldn’t have casual sex if they didn’t believe this.
I’m not saying they’re wrong, I’m just saying that they could be biased. They are human, after all.
Through a friend, though, I was able to connect with Bryan Kutner, a counselor who was in South Africa working with an HIV-prevention group when I reached out to him. His is a key populations specialist and a consultant with Columbia University and the Harm Reduction Coalition.
Kutner pointed me to a recent study suggesting that just because HIV is undetectable in blood doesn’t mean it is undetectable in semen. It’s one study of a small sampling of HIV-positive men (81), but it does suggest that being undetectable isn’t the “free pass” that some would like it to be, maybe. The paper raises yet another contradiction: as antiretroviral therapy has become more popular, HIV has experienced a resurgence. At the very least, we shouldn’t rest on our antiretrovirals just yet.
But what does that mean?
“You won’t get a hard answer from me on it, simply because there’s not enough science for us to know exactly the state of affairs for men who are gay or have sex with other men,” Kutner wrote me in an email. “Studies have quantified the lessened risk, but I wouldn’t generalize their findings to the lives of gay men. That said, the consensus is that undetectable viral load is a good thing, all evidence on the subject points toward lessened transmission risk, and there may be more we still don’t know but we’re just gonna recommend that low viral load has some beneficial effect on lessening HIV risk even if we can’t exactly quantify it yet among the gays and other [men who have sex with men].”
But the lack of hard facts does not mean that we must abandon reason. It does not mean that it is impossible to make educated decisions based on the scraps of knowledge that we have. Here is how Kutner broke down the choice faced by Grindr users on the poz/neg divide:
[Say] one profile says nothing about status, another says he’s negative, another says he’s positive and undetectable, etc. As a thought experiment, let’s imagine that what people say online about themselves is always true – which is a stretch to begin with, but let’s go with it for now. The guy whose viral load is undetectable might be the better choice for reducing the chance of transmission; he knows his status, he takes his meds, he has no measurable HIV in his blood. The other guys don’t say their status or they say they’re negative. The unknown status guy could have HIV but not want to say anything about it…Then there’s the negative guy. He’s either truly negative or he just thinks he’s negative; if it’s the latter, then in all likelihood his viral load is more of a transmission risk than the guy who knows his status and has undetectable viral load. Based on counseling NYC men testing for HIV, plenty of “negative” guys fuck without a condom and naively think they and the guy they just fucked is negative – so what they say about being negative is true, but it isn’t accurate since a guy’s HIV status is subject to change before he knows it has changed.
So of those three choices, the guy who’s willing to be out about his status might seem like the easier one to trust. Of course, it’s so much more complicated – who wants to think about HIV during sex when it’s hard enough to contemplate it after sex?
So, right. No firm answers to be had here, except that abstinence is the only way to stay truly safe. And abstinence, as we know, is impossible. How terrifying.
Miguel and Me, Redux
“This always happens: someone will feel bad and then they’ll see me out and they’ll be like, ‘Oh my god, you’re so fucking hot…'”
Miguel is 32 and was 21 when he was diagnosed. A former drug abuser, he told me that when he found out he had HIV, it barely fazed him. It wasn’t until he got clean that he realized the true value of himself – now he says he’s healthier than he’s ever been. He has an insanely cut-up torso to prove it.
Though he told me he isn’t angry, his words suggest otherwise. He gets visibly riled when we discuss HIV-related ignorance within the gay community.
“I’ve had people tell me, ‘I’ve ever been with anyone with HIV.'” he said. “Are you fucking kidding me? Do you live under a rock? ‘Well no one’s ever told me.’ That’s exactly it, and you never bothered to ask. So now you’re an idiot. And then they get mad and it’s like why are you getting mad at me? You’re the dumbass who’s probably going to get HIV because of your mindlessness.”
He isn’t exaggerating. Probably. Using CDC figures, I’ve calculated that 1 in 14 men who sleep with men in America has HIV. I’ve heard estimates as high as 1 in 5 in New York. The stats get fuzzy when you take into account how many guys have it but don’t know it (though there are stats for that percentage, too). In general, the hard facts are elusive. HIV is everywhere or not so much and maybe you’ll get it from someone who is undetectable or maybe you won’t and then maybe you’ll be fine after taking some meds. Maybe.
Where having HIV is concerned, you’re damned to a life of uncertainty and anxiety if you don’t, condemned to one of shoddy treatment from your gay brothers if you do. Even if I never contract HIV, it will remain a concern of mine for life. I have contracted an issue.
Miguel informs everyone of his status up front, and told me that those who don’t “are the people who create this stigma with us.” He said he has a “pretty damn active sex life,” hooking up with “a couple of guys a week.”
But “hooking up” means different things to different people. “I mainly just do what happened earlier. That’s about it,” he added.
After Miguel and I set up our brunch date earlier that day via text, he casually mentioned that he was jacking off. I thought that was hot. It inspired me to do the same and I told him. He sent me shots of his hard cock and asked me to, as well. I explained to him why I never do that (I write in public)…and then I caved. Part of it was out of obligation – I had already turned him down enough – but the bigger part of it was that it was sexually exciting, a slight risk (what if the pics leak?) to make a hot situation hotter. He sent me his ass pic as well, and we said nasty things to each other. “Shoot ur load,” he eventually directed me. “I’m going to in a bit,” I said back. He sent me video of himself ejaculating and then said, “Show me.” And so I did.
At brunch we talked about how hot that was, and how lovely our conversation was going. “I feel like this is much more intimate than a hookup,” I told him, verbalizing what I had felt back when Giovanni sat on my couch and spilled his story to me. “Me too. I would much rather do this,” said Miguel.
After we wrapped up our interview and brunch, Miguel and I stepped onto the bright Chelsea sidewalk outside of our restaurant and kissed passionately. We walked down the subway together, our arms spilling all over each other and I felt proud in the presence of this beauty and flattered that Miguel shared his knowledge and story with me.
* Except for Miguel and Bryan Kutner, the names that appear in this piece are pseudonyms.
When Gwenn and Shawn went to pick up Shawn’s HIV medications, they made a video update in the car that was intended to be a joke of sorts about how long it can take to pick up meds.
Then when they got home, they made another video about what they discovered about the medication that wasn’t so funny. Check out the videos, particularly the second one below. If you don’t like Vlogs– then here’s a spoiler: one of the drugs was in the wrong pill bottle and that’s why it’s very important for anyone who takes medication to know what their pills look like, and what they are called.
Posted onJanuary 16, 2012byr|Comments Off on Portrayal of HIV in the media & The Leveson Inquiry
The Prime Minister announced a two-part inquiry investigating the role of the press and police in the phone-hacking scandal, on 13 July 2011.
Lord Justice Leveson was appointed as Chairman of the Inquiry. The first part will examine the culture, practices and ethics of the media. In particular, Lord Justice Leveson will examine the relationship of the press with the public, police and politicians. He is assisted by a panel of six independent assessors with expertise in key issues being considered by the Inquiry.
The Inquiry will make recommendations on the future of press regulation and governance consistent with maintaining freedom of the press and ensuring the highest ethical and professional standards.
Lord Justice Leveson opened the hearings on Monday 14 November 2011, saying: “The press provides an essential check on all aspects of public life. That is why any failure within the media affects all of us. At the heart of this Inquiry, therefore, may be one simple question: who guards the guardians?”
A major concern for people living with HIV in the UK and the organisations that support them is the number of articles in the media that sensationalise and stigmatise HIV and unfairly represent individuals living with the virus.
Stories in the media can have a positive effect in increasing people’s awareness of HIV and what it means to live with HIV. However media reports about HIV are often stigmatising or inaccurate. Many stories contribute to a culture of blame about HIV transmission, focusing on so-called irresponsible sexual activity, use judgmental language and stereotype people living with HIV.
Improving the media’s coverage of HIV issues is vital to tackle discrimination experienced by people living with HIV, improve people’s knowledge and help prevent the spread of the virus.
Portrayal of HIV in the media
There are very few public figures who are open about their HIV status, and currently no established characters living with HIV in mainstream soaps or television dramas. NAT are calling for proactive initiatives to portray realistic HIV stories in the media, with the BBC and Channel 4 taking the lead as part of their statutory duty to promote disability equality.
As well as in the media, NAT would like to see greater, and supportive, visibility for people living with HIV both in cultural representation and public life.
NAT recently made a submission to the Leveson Inquiry, which is examining the culture, practices and ethics of the media, and made the case for the need to tackle the frequent inaccuracies still written about HIV in the press and the use of stigmatising and prejudicial language. You can read NAT’s submission to the Leveson Inquiry here.
Guidelines on Reporting HIV
NAT and the National Union of Journalists have jointly produced Guidelines on Reporting HIV to help journalists make sure that the articles that they write are not misleading and do not encourage negative perceptions about HIV.
Press Gang is an online group of people living with HIV who are interested in challenging stigmatising coverage in the media and making their voices heard. The National AIDS Trust keep Press Gang members informed of any stigmatising or inaccurate coverage and give them advice on how to challenge it.
Every day they scan many newspapers online and check other media for mentions of HIV and AIDS. Any articles that are identified as stigmatising or inaccurate are sent to Press Gang members via email as a ‘stigma alert’.
Members are then encouraged to write a letter to the editor or add a comment online pointing out why this article is stigmatising or inaccurate and informing readers about the realities of living with HIVin the UK.
NAT scans the media in the UK and worldwide daily for stories relating to HIV and produces a summary of the main stories of the week, with online links to the original article. You can read the latest news here. Where they identify inaccurate reporting of HIV, they always challenge it.
Medical professionals and patient support groups have raised concerns after people with HIV in London have been asked to switch to taking different antiretroviral drugs, as part of cost-cutting measures.
In April, London HIV Consortium, which is responsible for the capital’s HIV services, was tasked with saving £8m over two years, having to manage growing patient numbers on a budget that has not increased in line with inflation.
London Specialised Commissioning Group (LSCG), which commissions the capital’s HIV treatment, negotiated terms with atazanavir manufacturer Bristol Myers Squibb to receive discounts for larger orders of the drug.
As a result, clinics have been given new “prescription messages” – recommending doctors ask certain HIV patients who take a life-saving protease inhibitor other than atazanavir to switch to atazanavir – with saving money given as the overriding justification.
But now HIV doctors and support groups have raised concerns that switching prescriptions creates “medical risks” and raises “ethical issues”.
LSCG HIV drugs commissioner Claire Foreman said: “It is not in anyone’s interest – not our patients nor the taxpayer – to treat fewer people with more expensive drugs.
“There are no financial incentives for clinics to switch patients.”
No HIV patient will be prescribed an incorrect medicine as a result of this process” – Claire Foreman, Lead commissioner, LSCG
However, an HIV specialist at a London clinic, who wanted to remain anonymous, told the BBC: “Clinics are under financial pressure to contribute to the £8m savings.
“A confidential statement went out to doctors saying ‘there is a carrot and sticks approach to this. If you reach your targets each individual service will be set, there will be benefits for you this year, and clearly be benefits for you in next year’s budget’,” he added.
“Claire Foreman has back-pedalled on this.”
Ms Foreman denied this allegation, adding: “Doctors are taking a leading role to ensure patients can be treated despite the pressure on budgets.” The clinician added it was “clearly evident” if doctors did not meet targets for patients switching to atazanavir.
“Doctors are under pressure from the LSCG to get patients to swap to cheaper prescriptions. I’m not sure if it was taken into account the pressure that would put clinicians under,” he added. “Not only does that discomfort the patient, it’s costing us in terms of clinic visits.”
Ms Foreman said this was not the case, adding: “No HIV patient will be prescribed an incorrect medicine as a result of this process.”
The anonymous specialist went on to say: “It’s difficult to prescribe certain pills in London, that people outside London can get, due to financial pressure from doctors’ managers.”
LSCG said its prescription messages were in line with British HIV Association guidelines, but these were last updated in 2008 so did not consider drugs licensed since then.
More recent guidelines, including those of the European AIDS Clinical Society, recommend a range of drugs which are available through the NHS but are not suggested for prescription in LSCG’s messages.
However the specialist cited raltegravir as an example of an antiretroviral drug “that everyone wants access to, because it has few side-effects.
AHPN chief Francis Kaikumba fears African communities will be adversely affected
“But commissioners have stated it will only be used under certain circumstances.
“That’s entirely down to cost pressures. It would be easier to get outside London,” he said. The specialist added: “The prescription messages stop putting patient choice at the centre of care in London.”
“This could potentially damage doctor-patient relationships.”
LSCG said: “All standard of care drugs licensed in the UK are available for use by HIV doctors.”
Dr Mike Youle, an HIV consultant at north London’s Royal Free Hospital, told the BBC about potential ethical and medical implications of switching patients’ prescription.
“When you’re talking about someone who has been stable on a drug for five years, I see no medical reason to change their prescription,” he said.
“There’s an ethical issue about switching people.”
But Prof Brian Gazzard, chairman of the drug purchasing group which advised the consortium, said: “All the doctor needs to do is note the reason the patient doesn’t want to switch.”
Meanwhile, African Health Policy Network chief Francis Kaikumba said: “Vulnerable African communities will be adversely affected as studies have shown African people are far less likely to question their health advisors.”
Ms Foreman said: “Clinicians and commissioners have been clear that any targeting would be unacceptable.”
Addressing the medical implications, Dr Youle said: “Every time you change medication with HIV, you run two risks. One is having a side-effect. Something might go wrong. The second is you might fail on the next drug. The virus might be resistant and you may put your health at risk.”
Prof Gazzard said: “Switching can involve side effects. If it does the patient will be told ‘we’ll switch you back’.”
Switching HIV drugs can involve side effects
Dr Yusef Azad, from the National Aids Trust, highlighted emotional pressures patients might come under saying: “With HIV, daily adherence is vital. Concerns about their medication might undermine a patient’s willingness to adhere to treatment.”
Prof Gazzard said: “If stress is being introduced into that system it’s a problem between the doctor and patient, not the London Consortium.”
Meanwhile, Dr Youle asked: “What happens when the next tender goes out and a different drug becomes the cheapest?” You then have to say the drug you were originally on is cheaper and we’re going to move you back.”
Prof Gazzard said: “There will be a balance between the saving and the difficulties of switching people every two years.”
Some HIV support groups have said the deals between the LSCG and pharmaceutical companies were rushed through.
Robert Fieldhouse, editor of Baseline, a magazine for people living with HIV, said: “The consultation took place behind closed doors with the wider HIV community in the dark.”
But Ms Foreman said: “Commercially confidential processes mean specific prices of companies cannot be shared.”
Dr Asad said a wider debate should have been had before procurement. “It would have been better to have a more open discussion earlier – asking ‘is it ok to switch stable patients simply on the basis of cost?’,” he said.
Meanwhile, with the government’s Health and Social Care Bill proposing to shake-up the way the NHS in England works, London’s HIV drugs procurement will be closely scrutinised to see how money savings could be implemented on a wider scale.
Posted onOctober 21, 2011byr|Comments Off on HIV Diagnosis Progress Hampered by Inaccurate Online Information
Inaccurate and out-of-date online information about HIV is hampering efforts to improve early diagnosis rates, the National Aids Trust (NAT) has warned.
National AIDS Trust have set up HIVaware.org.uk, run in partnership with Durex.The charity carried out an audit of websites featuring information on HIV and other sexual health issues and found that much information was incorrect or out of date.
NAT chief executive Deborah Jack told GPonline.com that information about symptoms in particular was often inaccurate and represented a ‘missed opportunity’ to improve early diagnosis rates.
‘Given that we know that the majority of new infections are from people who are themselves undiagnosed – many of them at an early stage of infection – this is a real missed opportunity to educate people,’ she said.
‘There is no information about what the most common symptoms are what someone should do if they experience symptoms after putting themselves at risk.’
She said websites often stated that many people have no symptoms of HIV infection for years, even though 70%-90% of people have some symptoms during sero-conversion.
HIVaware.org.uk, will also be contacting publishers of inaccurate online information ‘to identify the content that needs updating and make suggestions as to how it can be improved’.
Ms Jack said the most common area where information was out of date is around testing. A number of sites state that laboratories can only test for HIV antibodies, whereas they can now test for antigens and nearly all clinics use these tests, she said.
Websites also inaccurately stated that there is no point in taking a test for at least three months and that patients need to wait for your test to be sent off to a laboratory to get your results, she said. In fact, antigen tests provide accurate results from four weeks after potential infection and point of care tests, which provide results in 20 minutes, are now being used in a number of settings.
Are you interested in having a HIV test? We offer a completely free and confidential rapid HIV test and you’ll get the results within 60 seconds from a simple finger prick test. We use the Insti HIV test produced by BioLytical laboratories. The test is 99.96% accurate from 90 days post contact for detecting HIV 1 and 2 antibodies. We also have a mobile testing van which is often out in communities providing mobile rapid HIV tests. Appointments are not always necessary, if you would like a test, please contact us on 0116 2559995