The other day I had a semi-critical post about some researchers in the UK who seemed to mean well but came out with what sounded like naïve recommendations. I had the following e-mail show up from someone in the UK regarding that post. I don’t know his exact credentials or affiliations, but what he’s saying sounds much better balanced than what I read when I wrote up the first post…
Hi rawTOP
Your site is on my favourites list.
I tried but couldn’t figure out how to post a comment on “Researchers mean well, but…” and thought you might find this article on AIDSMAP helps answer your questions.
[The article basically says in Quebec they’ve found that 49% of new HIV cases were the result of people who were recently infected, 15% were the result of established HIV cases in people who were untreated, and 12% were the result of established HIV cases in people who had/were undergoing treatment, with the remaining 24% unclassified.]
I work for a Manchester, England HIV support charity and two weeks ago attended an expert HIV prevention seminar in London, organised by the National AIDS Trust. They will soon produce a paper outlining our findings. We had expert epidemiologists, virologists, clinicians and in prevention, put together a jigsaw of research findings from the UK and rest of the developed world, for us to discuss and then develop the outline of a new strategy for England.
70% of people who become infected show the 3 main symptoms of early (primary/acute) HIV infection – and for half of these the symptoms are bad enough for tough [sic] normally healthy gay men to seek medical advice, but unless you attend a sexual health clinic it is most unlikely that the doctor will recognise this for what it suggests. If these early infections were instead diagnosed at this early stage, we know from other research that there is then a 50% reduction in unprotected anal sex, and this is much higher in relationships where HIV status is known to be different. People with primary infection are, by a very wide margin, at the most infectious they will ever be. People with primary infection are the source of most of the new infections. By contrast, people monitored on treatment with a viral load that has been undetectable for 3 months or more, and no STIs, are only borderline infectious and only account for about 17% of all transmissions.
The thinking is to radically increase the proportion of people diagnosed in primary infection – by making gay men more aware of the 3 main symptoms of primary infection and the need to do something about it (like you and the young guy in your entry “How HIV teens become positive”), by better diagnosis by clinicians , and by the use of the new 4th generation HIV tests which can pick up primary infection at about 3 weeks. Persuading and supporting people diagnosed to then avoid onward transmission when they are at their most infectious has the potential to make a radical reduction in the numbers of new infections. In the UK people with primary infection can join a early treatment trial on our free National Health Service and this would also reduce infectivity within a few months.
In England we have excellent local and national HIV data and know where all the HIV hotspots are – London, Manchester, Brighton (a South coast city 50 miles from London), and Blackpool (on NW coast near Manchester). The great majority of new infections that occur here are among gay men and in these centres. We also have a national annual gay men’s sex survey so we know a great deal about risk-taking behaviours, awareness and attitudes and how these are changing. http://www.sigmaresearch.org.uk/
Everything the researchers ask for in this article you quote is now known in England and we are already on the case.
Switzerland is going for broke with a radical primary infection campaign – this asks all gay men to only have protected sex for the current 3 months, then all who are undiagnosed to get tested. This would make a radical difference because the temporarily universal safer sex would almost stop ongoing transmissions including primary infections. The testing would help further reduce ongoing transmissions after this, because a positive test result helps change risk behaviour. It will be easy to spot if it works – we will see a big rise in new Swiss diagnoses this year and then in future years a much lower level of new infections and diagnoses. The political/social culture in Switzerland is very different from the UK / USA; like some other small European countries, it has a culture of much greater mutual social obligations and expectations. Any reduction in risk behaviour arising from the campaign will help, even if only a small proportion of gay men take part. We would benefit from something radical here and in the USA, but it will need to suit our more individualist social climates. But we can expect a great deal without this, just by refining what we already do.
One of the things we also need to do in England is to make a big cut in the number of people who are undiagnosed – currently around 30%. Many gay men attend STI clinics but refuse HIV tests here. Half the gay men with undiagnosed HIV in Brighton leave the STI clinic still undiagnosed. Simply getting the gay men who have an other STI to have HIV test would make a difference, because other STIs make HIV transmission much more likely in both directions, and because men with STIs are clearly already taking significant risks.
You are right that stigmatising notices in bars will not cut the mustard. However contact tracing of partners of people who are diagnosed makes sense. This is already done confidentially and routinely here. If we now prioritise the contact tracing of partners of those in primary infection, that would make a big contribution. Research into the mini-bursts in Brighton shows half the men with primary infection were part of these bursts (we call them infection networks) and half of these passed on HIV to 2-4 others, and the other half passed on HIV within about their first year of infection to between 5 and 18 others.
Maybe you might post a few links under your General heading to accurate HIV information sites so guys interested in the things you write about HIV can follow them up?
Here’s an item from Manchester, England, about a successful primary infection initiative in the USA. We are always interested in news and views from around the world which help make a difference. http://www.ght.org.uk/news_and_views_news_article/1651
cheers
skinscribechris
So… The weak spot I see in his plan is how to increase HIV testing. If guys are going into STD clinics, where they’re offered HIV tests, and they refuse them, then how do you get them to change their mind? Obviously you can try to get guys who don’t go for testing of any sort to go in and some of them will get HIV tests. And you can get primary care doctors to do more testing (we’ve had ones who do HIV tests without asking first, not realizing they’re breaking the law by doing so – or they just casually mention they’re going to do one and don’t actually ask if it’s OK)…
But honestly, if guys are refusing HIV tests when they’re offered, that’s not going to change – and those are probably the guys who are in “infection networks”. At least some of those “infection networks” are by design – even if it’s subconscious and outwardly they just tell themselves they don’t care and don’t want to think about it, there are guys who want to get infected and others who want to pass on their HIV. I mean there are whole web sites that are devoted to bug chasing and gift giving…
Still I wish them luck (since they don’t seem to be advocating fascist methods to achieve their goals) and it’s obvious they’re thinking about things as realistically as they can. But it’s a difficult task, to say the least… These days the cards are stacked against them. My one suggestion is to get members of the bareback community onto their community advisory boards… They need a reality check for some of their assumptions…
UPDDATE: The guy got back to me, told me his credentials (he’s the real thing), and commented on some of my comments…
So why
do guys refuse a test?
In England, tests at STI clinics are currently offered on an opt-in basis and sometimes not enough is done to advocate the advantages of testing. However when testing is offered instead on an opt-out basis and normalised, testing rates shoot up. For example, when pregnant women were offered the test, midwives tended to make assumptions around risk depending on the woman in front of them. Rates of accepting tests were low, in one health district locally the average was only about 40%. The national Department of Health was faced with significant numbers of babies born with HIV, so it set a national target to raise this antenatal testing rate because of the risks of onward transmission to the baby, resulting in testing rates in that area exceeding 90%. That helps ensure a lot of babies don’t get HIV. When we studied the test acceptance rates achieved by different ante-natal clinics and for individual staff, there was a huge variation. Some retraining was needed to help the midwives overcome their reluctance to strongly advocate for testing, and this is an easier sell (compared with gay men) when the health risks to the unborn baby are pointed out and what can be done to minimise transmission to the baby. With testing and appropriate care and treatment for mother and baby, the transmission risk is now down to only about 1%.
The proposal is now to normalise testing at STI clinics, so the nurse would say we’ll test for all the STIs and list them and ask is that OK? People will continue to have the right to say no to any particular test, but the message will be that this is what we normally do in an STI clinic, that’s what we are here for, and to strongly encourage all to agree for these reasons….. . At the moment the script tends to be we’ll test you for x, y, z and would you like a HIV test too?
Another problem here has been a gross lack of capacity at STI clinics for testing because STI clinics are a cinderella health service. People a couple of years ago could wait 6-8 weeks for an appointment. Capacity is now very much better and still growing. There is a national target for access within 48 hours of asking and this is near being reached. The lack of capacity has inhibited major testing campaigns – these tend to attract the worried well in large numbers.
Clearly some guys will still refuse, and that is their choice. There are some men in sex / party networks who will say no, at least for the time being. Once people get ill with symptomatic infection, almost no-one refuses when their life and well-being is at significant and immediate risk.
The bug chasing and gift giving websites and networks contain a heady mix of fantasy and reality. Investigation here a few years back showed that they were largely fantasy. Some guys get off on the ideas, and raw sex is really appealing – as I know myself because I am old enough to have had a condomless sex life before HIV appeared, and the reappearance of a great deal of bareback porn shows very well.
When investigators attempted hook ups they were almost always unsuccessful. Maybe they were not reaching the right men and there are strong reasons (including prosecution) why most gay men will not ‘fess up to investigators – courts here can and do order the release of clinic / researchers’ data about men, when the police have to investigate after someone complains of having been recklessly or deliberately infected. Investigators and researchers are now unable to do this type of work because they can’t get ethical approval due to the risk their research data will be used against the men they interview.
UK culture rules out compulsion because of the high value our health service puts on personal autonomy – your right to decide exactly what to do with your own body. People can’t be forced to test or have treatment. But the culture is shifting – there are high profile campaigns about smoking with a ban on smoking in public buildings and workplaces like bars and clubs, around obesity and eating healthily, and about safe drinking because of our international reputation for drunkenness. But there is a world of difference between strong campaigns and compulsion.
Thanks for your suggestion about asking barebackers to help advise and guide us. Not easy with the risks to the men of their details being passed to the police after a court warrant, but we’ll try to find another way that won’t land gay men in legal shit. Many of these profile and and hook up websites want nothing to do with any attempts from HIV awareness and prevention services to reach the men using them, and the commercial ones usually want paying and the community HIV sector doesn’t have much money to pay advertising rates pitched at highly profitable porn providers.
Opt-out vs. opt-in… Hmmm… I can definitely see where that can be a help in the straight community where people may not realize they’re at risk, It will be interesting to see what effect it has in the gay community. Gay men know they should get tested. It’s not like ignorance is a big factor like it might be in the straight community. So going from opt-in to opt-out is just applying social pressure to not say ‘no’ to what the doctor wants. I’m wondering if anyone has really examined who the half of guys are who have HIV who leave without getting tested? Are they scared they’ll be poz? Do they think they’re in a monogamous relationship? It will be interesting to see what the effect is. I doubt it will be nearly as dramatic as it is with pregnant women and babies…
The lack of capacity at health clinics is just wrong. In NYC you can get completely anonymous testing the same day if you’re willing to show up early and a wait a few hours. And even at places like Callen-Lorde, where I usually go, you can often get an appointment the same day or the next day. In another post I said the US health care system isn’t all that bad (if you have insurance) and stuff like this just proves my point. Socialized medicine is supposed to be good at preventative care, but in this case it’s clearly not as good as it should be.
I’m not understanding the difficulty of having barebackers on community advisory boards. Perhaps you don’t have CABs in England like we do here in the States. I was on one for Project Achieve which is one of the HIV vaccine trial centers here in New York. Essentially I was put on a board which met with the senior research staff once a month. We made a commitment to serve for at least one year. The research staff would pass ideas by us that they had been thinking about the previous month and basically Project Achieve didn’t do anything without CAB approval. We were brought up to speed on absolutely everything they were doing (of any significance).
In the case of HIV prevention policy, you’d have a CAB and bounce ideas off them.We’re not talking about a research study where you confidentially get people to tell you what they’ve done, or a form of “outreach” to change people’s behaviors, but rather a policy committee that approves what you’re planning to do in their community. It’s important that you not take any action without their approval – otherwise they’ll think it’s a waste of time. You’ll want a mix of people on the committee – everything from barebackers to condom nazis to people who are indifferent, neg guys, poz guys, young guys and old… It’s your responsibility to make sure no one group dominates the committee and alienates the others. I can’t see that anyone could get in legal trouble for what they say in a policy committee, but if that’s really a concern just don’t record the names of who said what in your minutes of the meeting.
The benefit of having a CAB is that you get to bounce ideas off “average” people – see if they think what you’re planning makes sense, or if they have ideas and points of view you hadn’t thought about…
As far as the bug chasing web sites… Were your researchers pretending to be tops or bottoms? I’m guessing they’d have more luck as tops… But either way – watching the sites (one in particular) I’ve seen a shift over the last year or two. There are more stories that don’t feel like fiction, and more guys participating… Sure, there’s still a heavy dose of fantasy, but fantasy eventually turns into reality for many guys. You start reading stories and jacking off and end up not asking for a condom or even asking the guy to pull out when you know he’s poz…
But a lot of the young guys aren’t so much bug chasers as they’re addicted to cum and getting loads. They actually don’t want to think about getting pozzed, but still know it will happen eventually. I’d guess you’ll find a hundred of those for every one full-on bug chaser.
