This article by Gus Cairns first appeared on aidsmap.com here.  

A paper in The Lancet Infectious Diseases by scientists from the UK’s Medical Research Council and the Health Protection Agency (HPA) has calculated that the number of gay men in England and Wales who become infected with HIV each year remained unchanged between 2001 and 2010. This is despite a considerable increase in testing and, they estimate, a 40% reduction in the proportion of gay men with HIV who are undiagnosed.

The paper concludes that, in England and Wales at least, the proportion of gay men with HIV who are on treatment and with undetectable viral loads is currently too low to bring about a decline in annual HIV incidence in this population. This is in contrast to declines in diagnosis, and claims of declines in incidence, seen in places such as San Francisco, the province of British Columbia in Canada, and some locales in South Africa.   

As well as extending HIV testing to non-traditional settings and urging gay men to test more frequently, the authors conclude that “the initiation of treatment on diagnosis, regardless of CD4 count might well be necessary to achieve control of HIV transmission”, and welcome the new BHIVA treatment guidelines' recommendation "that clinicians discuss the benefits of early treatment uptake as a prophylaxis to protect sexual partners” as a step towards this.

Calculating incidence

The paper is a mathematical model. It uses available data on diagnoses, CD4 counts at diagnosis, and the proportion of people on antiretroviral therapy (ART) to make estimates of the true annual number of infections (annual incidence) in gay men, the number undiagnosed, average time gap between infection and diagnosis, the distribution of CD4 counts among diagnosed and undiagnosed men and the proportion who are on treatment and with an undetectable viral load.

Although mathematical models are always estimates, in this case surveillance data from the UK are of good enough quality to make them quite robust, though because by definition fewer very recent infections are diagnosed, incidence estimates for the last two years are less certain than for previous years.

The incidence rate is not the same as the new diagnosis rate in HIV, because of the time lag between infection and diagnosis. If the number or frequency of HIV tests go up, the number of diagnoses will tend to go up, since more long-term undiagnosed infections will be identified. The researchers got round this problem by using CD4 count at diagnosis – available for the majority of diagnosed people in England and Wales – as a surrogate for the time delay between infection and diagnosis, given that CD4 counts in people with untreated HIV tend to decline at an even rate over time.  

Results – diagnosed and undiagnosed

The number of diagnoses in gay men in England and Wales increased from about 1800 in 2001 to 2600 in 2010. However by adjusting this for CD4 count at diagnosis, the researchers estimated that the true annual total of HIV infections in gay men had remained virtually unchanged, from 2200 in 2001 to about 2300 in 2010. There was an increase in incidence to about 2700 a year in 2003-4, due to increased rates of sex without condoms in gay men, but this has reduced since.

This reduction is due, the researchers say, to more gay men taking tests and to a shorter period between HIV infection and diagnosis. The number of HIV tests taken by gay men in sexual health clinics has grown nearly fourfold, from 16,000 in 2001 to 59,300 in 2010. As a result, the estimated time between infection and diagnosis has shrunk from four years to 3.2 years during this time, and the proportion of gay men with HIV who are undiagnosed from 37 to 22%.

The reason it has not shrunk more, say the authors, is due to gay men not testing often enough. Last year, study co-author Valerie Delpech of the HPA told the IAPAC Prevention Summit that only an estimated 10 to 15% of gay men took an HIV test every year, and that two-thirds of gay men who had had a test at a clinic had, two years later, not returned to that clinic for another one.  

Because there are (as of 2010) 3.2 years’ worth of undiagnosed infections in the population, the total number of gay men with HIV who are undiagnosed in England and Wales was estimated as 7690 in 2010. This was only a small increase from 7370 in 2001 and represents a 16% decline from 9140 in 2004-5, again due to more testing.

The proportion of gay men with HIV who are undiagnosed has gone down by 40% while the number has scarcely changed because total HIV prevalence and the number of UK gay men living with HIV has grown over the same period.

Results – implications for treatment

In 2001, at HIV diagnosis, about 65% of gay men had a CD4 count under 500 cells/mm3, 40% under 350 cells/mm3, and 18% under 200 cells/mm3. Ten years later, the proportion in these three categories had only fallen by about 5%. This means that less than 40% of gay men would currently be advised, under treatment guidelines, to begin taking antiretroviral therapy (ART) for treatment reasons as soon as they are diagnosed.

The researchers calculated that, because more undiagnosed infections are recent ones, only 20% of undiagnosed gay men had a CD4 count under 350 cells/mm3 and only 45% under 500 cells/mm3. Further decreasing the proportion of gay men with HIV who are undiagnosed, and raising or abolishing the CD4 threshold for treatment initiation, would therefore have considerable cost implications for the National Health Service in England and Wales.

Conclusions

In many ways, the UK’s response to HIV has been excellent. The proportion of gay men with a CD4 count under 350 cells/mm3 who are on ART has increased from 75% in 2001 to 84% in 2010; 65% of all patients in care, including the untreated, have undetectable viral loads; and annual loss to follow-up of those attending care is under 5%.

In the US, in contrast, it is estimated that there are more gay men who are diagnosed but not taking ART than there are undiagnosed, and that only 28% of people with HIV are virally suppressed. But gay men in other countries test more frequently: as an accompanying editorial by Reuben Granich of UNAIDS points out, the 22% of gay men who remain undiagnosed in the UK is not as good as an estimated 14% in Vancouver and only 6% in San Francisco.

Because most of those with detectable viral loads in the UK are undiagnosed, it is estimated by the HPA that up to 50% of HIV infections in gay men here could be being transmitted by men in primary HIV infection and another 35% by undiagnosed men with long-term infection. The authors conclude that treatment initiation at diagnosis, earlier, more targeted testing, and better primary HIV prevention all need to be part of any national HIV prevention plan for England and Wales.

References

Birrell PJ et al. HIV incidence in men who have sex with men in England and Wales 2001-2010: a nationwide population study. The Lancet Infectious Diseases, early online edition: http://dx.doi.org/10.1016/S1473-3099(12)70341-9. See abstract here. 2013.

Granich R HIV in MSM in England and Wales: back to the drawing board? The Lancet, early online edition: http://dx.doi.org/10.1016/S1473-3099(13)70035-5. See first few lines here. 2013.

Back in early 2011, as some of you may remember, we had our funding pulled after almost 25 years of providing prevention, education, testing and support services for those living with or affected by HIV, and the wider population of Hertfordshire. This was not the result of a funding cut, more from a desire to transfer funding to another organisation chaired by an employee of lead funding body Hertfordshire County Council (HCC).

This decision was taken without consultation, and resulted in a service which does not meet the needs of those living with HIV in west Hertfordshire, where the majority of those affected, and also the majority or residents, in this affluent county reside.

For those of you unfamiliar with the geography, Hertfordshire is a large county just outside London with a population of 1,119,800 (Source HCC census data) It has a rather disjointed transport network which makes it very easy to travel north to south in the county but not east to west.

For this reason historically there had been two agencies providing HIV services in the county, one east, the other west (the Crescent). As mentioned the decision to transfer all services to the east of the county was without consultation, and seemingly for no reason, other than the desire of the other agency to take on the service countywide.

The Crescent has been fighting this decision ever since on behalf of those 300 or so people who rely on us for support in the west of Hertfordshire alone. We have gained support from a number of notable sources, including Peers such as Lord Fowler and Lord Rennard.

Also stars from the stage and screen such as John Sessions, CJ de Mooi and Stephen Fry have all waded in to help. We even made it to the House of Lords last April to discuss this matter in person with the likes of Lords Fowler and Lord Rennard, Baroness Jolly, MP’s and other notables.

Regrettably, though the support is ongoing and very helpful, without funds we are struggling, so much so that we had to lay off all staff at the end of August and the service is now being run by volunteers like me using our own money to keep the doors open.

Following coverage of the situation in the satirical magazine Private Eye things began to change a little with HCC appearing to be more concerned about the situation and a number of meetings took place between The Crescent and HCC officials.

We were invited to tender for the new contract for services due to start in April which we duly did. We passed all stages of the prequalification process. The process is designed to establish if we had the ability to perform the role of support agency accurately and efficiently, with appropriate skills and procedures in place.

Unfortunately HCC decided that as we had been spending more than we had as income for the previous two years they we were an unacceptable financial risk. This is hardly surprising given they were responsible for removing our income in the first place. It was also something of which they were aware before inviting us to apply.

We therefore see this as yet another attempt by HCC to be seen to do the right thing whilst not really having any intention of doing so. It means that we are continuing to support those in west Herts using our own money and continuing to work as volunteers.

We have been fortunate to get some small donations from local County Councillors from their locality budgets which clearly indicates that not all within HCC agree with their stance. These donations have enabled us to pay basic utilities but little else, and so we are still carrying on in a voluntary capacity only.

The demand for our services has never been greater, however with dwindling resources and relying on volunteers alone, many of the services we offered have now been suspended.

In particular the testing services so vital in the struggle to get those undiagnosed tested and into a care regime have now stopped. This is primarily because of a lack of appropriately trained staff as a minimum of two people need to be present to undertake the process.

On World Aids Day 2012 Prime Minister David Cameron called for more to be done to halt the increase in HIV transmissions in the UK as figures released show that transmissions between gay men had reached an all time high and that almost half (48%) of new cases had been acquired through heterosexual contact.

However our appeals for help over the last two years sent to Mr Cameron and his deputy Mr Clegg have seemingly fallen on deaf ears. The response has generally been that “it is a local decision, they cannot get involved” or another excuse “it is a local decision and up to the local people to take the local authority to task and hold them accountable.”

Appeals to the Department of Health have brought similar responses. Publically everyone in a position of authority seem to be saying the right things, but when it actually boils down to it nothing happens to help struggling long established organisationslike The Crescent.

Meanwhile, as can clearly be seen, cases in vulnerable groups are on the increase, the heterosexual community are for the first time accounting for almost half of the new cases and a further 25– 26,000 people are predicted to be undiagnosed at the moment.

If this trend continues the progress made in fighting HIV in the UK will be undone. Do we really want that? Currently it is estimated that 1 in 20 Gay men in the UK are affected and this rises to 1 in 12 in London itself.

With prevalence so high in London, areas like west Herts will be affected similarly. Towns and cities like Watford and St Albans are prime commuter locations 15 - 20 minutes away from central London. It clearly indicates a need for more support, detection, care, and education services available in such areas. However the trend seems to be to reduce or remove these entirely.

So what next for the Crescent? We will fight on, we are still endeavouring to obtain more funding, there have been some very generous local people who are helping, but for any sort of hope for us we need to broaden our number of donors.

We continue to get coverage in national and local media, in particular our participation in the Stand Tall Get Snapped exhibition where 30 HIV positive people came forward to tell their story in an exhibition which ran in a prominent central London location from World Aids Day though to last week.  A link to one of the articles featuring a Crescent Trustee, Rachel, is here. 

As mentioned we were all made redundant in August 2012 and therefore have been working as volunteers since then, but this regrettably is not sustainable as none of us have a huge amount of savings to fall back on.

Personally if it hadn’t been for a small inheritance from my Grandmother who passed on recently I wouldn’t have been able to get this far. As a former St Albans resident, retired headmistress and mothers union member I know that Nan would approve of the use, indeed we discussed the issues shortly before she died inearly 2012.

So another year has passed, we are still here, but only just, we still provide training and education services, drop in services, social groups and so on. However without some real help of a financial nature we will be lost, and those hundreds of people we support will have to fend for themselves. Not to mention those who without education will be unaware of how they can avoid HIV and therefore be at a greater risk than they need be.

It is estimated that in medication costs alone one new diagnosis today will cost the NHS approximately £260-300,000. This is without the social care cost, or considering the impact on the individual and their family. £300,000 would fund us for around three years, not hard to see that even if we only prevent one transmission a year we are saving money for cash strapped economy.

The trouble is no-one seems to have grasped this point yet. Our fear is that by the time this is finally realised it will be too late for us, and too late for countless others who have unnecessarily become an HIV statistic.

Worldwide we are on the cusp of beginning to win the fight in reducing infection rates and deaths. However if we continue to allow agencies like the Crescent to close, all that progress will be lost and HIV will begin to win. Who wants that? Not me, nor apparently our political leaders. Words are cheap, action is what is needed.

Herts County Council maintained they couldn’t afford to continue funding two organisations, however a local newspaper (St Albans Review) reports that HCC have dished out over 30 million in the last two years in so called “golden handshakes” to staff, with one (presumed to be the former Chief Executive) walking away with £295,000 last year, and another 3 taking a share of £562,000 

In comparison our funding was less than £100,000 pa, small change in comparison really, isn’t it!

We will fight on for as long as possible, we have more discussions ongoing with potential funders but if anyone reading this is feeling able to assist, all donations of any size will be very welcome.

In the UK this can be via Vodafone Just Text Giving by texting CRES19 plus £1, £2 etc  up to £5,after that £10 as a maximum to 70070, or via our website www.thecrescent.org.uk using PayPal, or by sending a cheque or postal order to The Crescent, 19 Russell Avenue, St Albans Hertfordshire AL3 5ES.

On the 1st of December (World AIDS Day) I decided to order a free HIV home test. I am heterosexual and have been in a monogamous relationship with my partner for 7 years. Even though I am in a low-risk group, I was shocked to read the latest news from the British HIV Association that new diagnoses of HIV in heterosexuals where the infection was probably acquired in the UK is around 50%, almost double 2002 levels. 

I ordered my test from https://www.DrEd.com/uk/ who was giving up to 100 away for free because of World AIDS Day. It was fairly easy, I just needed to set up an account and they even offered to inform my GP for me if I wanted them to. On Monday I got an email saying my account had been updated, when I logged in there was a message saying my test had been dispatched.

On Tuesday I came downstairs in the morning to find my test waiting for me in a plain black envelope.

I had my breakfast and a cup of coffee, put HBO’s Girls on the TV and still in my pyjamas sat down at my coffee table and opened up the pack. You can see what comes in the pack below right

This is what the package looks like when it comes through the post, pretty inconspicuous really. It fits through the letterbox and there is no way you can tell what it’s about without opening it up.

Once you open it up this is what you will see. There is an instruction booklet, a pre-paid envelope to send it back in, a collection tube, name stickers and 3 mini needles.

All done! Once everything is in the envelope you can post it in any Royal Mail Postbox.

I’ll be honest – I am a complete wimp when it comes to needles. I can do it to somebody else but when it comes to me I can barely look. I spent a good ten minutes with the jabber on my finger counting to 3 repeatedly. I then had to get a fair amount of blood out into the small pot, and ended up having to prick another finger. Ultimately, it wasn’t too bad and I got there in the end.

I know there has been some controversy about HIV home test kits, understandably so. I felt it was appropriate for me for a number of reasons. Firstly, services in Essex are pretty rubbish, and make the process rather lengthy. Secondly, I work in healthcare and have plenty of people I could call on if I am worried/anxious or if the result came back positive. Thirdly, I am fairly low risk, if I had had a risky encounter I may want to speak to somebody about it first, and find out the facts.

When I ordered the test I felt pretty calm about it, and just saw it as an opportunity to raise awareness. However, whilst waiting for the test I have found myself becoming increasingly anxious about the results. Could I still be a nurse if it comes back positive? What if I have infected others without realising it? Who could I have got it from? I was one sleepless night away from planning my medication routine. During this process I researched a fair bit about HIV and found out some interesting facts:

a.) There is a 1.8% chance of catching HIV from a needle-stick injury, not the 100% I assumed it would be.

b.) Significantly fewer people were able to identify correctly the ways in which HIV is transmitted in a 2007 survey than were able to do so seven years earlier.

c.) There are estimated to be 22,600 people living with HIV in the UK who are unaware of their infection. This represents 24% of everyone living with HIV in the UK.

I have come to realise that this is now a chronic, manageable condition, it is no longer the death sentence it once was. I also realised how little I really knew about HIV and how ignorant I was. I find it heart-breaking that people are becoming less aware of HIV, and incredibly worrying that people are becoming less able to correctly identify the ways in which HIV is transmitted.

Whilst I waited for my results I got a phone call from an unknown number, they confirmed they were speaking to Miss Elizabeth Parr, and at that point my heart was in my mouth. Luckily, it was just a call about some work I was doing. It made me realise how nervous I really was about the chance of my results coming back positive though.

On Friday I was lucky enough to have my results come through as negative, which has left me to reflect on my experience of the home-test.

For me, it was fantastic; in total it probably took me 45 minutes to order the test, take it and send it back off. I didn’t have to have any sort of awkward conversations and I didn’t need to tell anybody the result if I didn’t want to. However, had I struggled to get the sample or if it had come back positive, I would feel very differently.

Whilst looking for the test I wanted to take, I also came across home-testing that gives you rapid results, similar to a pregnancy test. Although it would have stopped me having an anxious few days, they are less reliable and had the test come back positive I would have had absolutely no support. I think I would prefer to have an anxious 48 hours than find out that sort of news on my own.

I have learnt a lot about HIV over the past few weeks, and I wish more people would get themselves tested, it is becoming increasingly easier to find out your status. Even though I am low-risk and the result came back negative, I have still learnt a lot through this process. If you’re reading this and don’t know your status, go and get yourself tested! There are no embarrassing conversations, no lectures and it could save you or your partner’s life.

Councillor Elizabeth Parr is the Liberal Democratic councillor for Elsenham and Henham, in Essex. This article first appeared on her blog here.

By Roger Pebody  First Published 01 March 2012 in aidsmap. Republished with permission. 

Whereas in previous years, delegates at the CHAPS conference of gay men’s health promoters have demonstrated a certain scepticism with respect to ‘treatment as prevention’, the topic took centre stage in Bristol this week.

At a panel discussion on the impact the approach will have in the UK, Cary James of the Terrence Higgins Trust and other speakers argued that treatment as prevention will be part of a combination prevention approach that will still promote condom use, other forms of safer sex and regular testing. Moreover treatment as prevention will amplify the benefits of the other interventions. However earlier in the day, Ford Hickson from Sigma Research had noted that while there are multiple ways in which individuals can reduce their risk of being involved in HIV transmission there has long been a tendency for people to strongly advocate the universal use of one method, to the exclusion of all others.

While homophobes would like gay men to simply avoid having anal sex and various groups urge men to have fewer sexual partners, a great number of people see condoms as the sole answer. More recently, treatment as prevention and other biomedical interventions have sometimes been presented as magic bullets.

Matthew Hodson of GMFA noted difficulties with condoms, including failure rates and the fact that many men find that they reduce intimacy, spontaneity and sensation. “Any alternative to condom use which doesn’t have those drawbacks and which has a similar or better impact on reducing the risk of transmission has got to be welcomed,” he said.

But he warned of difficulties in communicating new HIV prevention messages. “Condoms have never been the sole HIV prevention activity but have become synonymous with ‘safer sex’,” he said. “Community attachment to the ‘use a condom every time’ message is immense and any agency which suggests alternatives or publicly questions whether condoms remain the best method for HIV prevention is going to face a truckload of criticism and accusations of betrayal.

“A lot of the adjustments we have made to our HIV prevention messages over the years have been ignored, condemned, misrepresented or gone unnoticed,” he continued. “Any change in the message that we put out will take a long time to filter through to people who aren’t already engaged with information about HIV.”

Cary James commented: “I’m not quite sure whether ‘treatment as prevention’ is the message or whether it’s just an added benefit that reinforces the work that we are already doing.”

The social researcher Peter Keogh noted the distance that needs to be travelled between the compelling evidence of effectiveness and the routine use of treatment as prevention in the UK. Research on how it can be implemented in clinical settings is needed, he suggested, and clinicians may need resources to help them be most effective when engaging with their patients about their social and sexual lives.

Cary James noted that treatment as prevention is bringing clinicians and community prevention groups together, and amplifies the role that sexual health clinics can play in HIV prevention. Matthew Hodson argued that communication around treatment as prevention will be more effective if those involved can come to a consensus on the core messages about the benefits of treatment, its impact on infectiousness and the role that condoms will continue to play.

 Ian Williams, a clinician and the chair of the group preparing the new BHIVA treatment guidelines, outlined the recommendations in the draft guidelines. The advice in the guidelines is not that clinicians advise their patients to start treatment for prevention purposes, but that the clinician has a discussion with all HIV-positive patients about the potential of HIV treatment to protect sexual partners.

If a patient wishes to take treatment for this reason (even if he has no need for treatment himself), that decision should be respected. Ian Williams stressed that the choice to start treatment must be that of the person with HIV and not anyone else – not the clinician, not a sexual partner.

While the evidence does come from heterosexual couples, he said there is no clear rationale for thinking that the data would not be relevant to gay men. “It would be unethical and against biological plausibility to say in the guidelines that this this is just aimed at heterosexual serodiscordant couples,” he argued.

However he noted that while there is compelling evidence for the effectiveness of treatment as prevention on an individual level, its impact on a population level (the effectiveness of a universal test-and-treat model) is as yet unproven.