It’s now 21 years since the first experiments were conducted on monkeys to see whether the drugs used to treat HIV could also be used to prevent HIV infections.
In 2010 a large study of gay men concluded that PrEP (pre-exposure prophylaxis) worked.
Two years later the FDA approved PrEP for use in the USA and the PROUD study was set up to determine what impact the medications could have on HIV infections among gay men in the UK.
PROUD found that PrEP reduced HIV infections by 86%, such a significant impact that the control group (i.e. those in the study who were not on PrEP) was closed down. The case for PrEP was compelling.
But still we waited for the NHS in the UK to take action.
‘Something needed to change but the NHS dragged its feet’
Last year it was estimated that there were another 2,800 HIV infections among gay and bisexual men in the UK.
This figure hasn’t gone up in recent years but it hasn’t gone down either. Something needed to change but the NHS dragged its feet, arguing that it couldn’t afford PrEP, despite studies confirming that it would prove cost-effective, or that it wasn’t the NHS’s responsibility, an argument that was dismissed by the High Court.
A vast array of LGBT and HIV organizations around the country, including our colleagues at NAT, Terrence Higgins Trust, GMFA and the LGBT Foundation, argued for PrEP to be made available.
New activists emerged. We were ‘United4PrEP’. We marched together at Pride, a show of unity within the HIV voluntary sector that I had not witnessed in many a year.
And now PrEP has been promised. Sort of.
I cautiously welcome the news that the previously announced PrEP trial, now supported by both the NHS and Public Health England, has been considerably scaled up so that it will provide PrEP to 10,000 people over three years. This figure is broadly in line with the estimated level of demand.
‘Will it be available to everyone or will there be restrictions based on postcode?’
This trial isn’t intended to test the effectiveness of PrEP: that is already well-established. Rather this trial will determine how to identify, engage and maintain PrEP users and assess its broader impact on HIV and STI incidence.
The fact that this is only a trial leaves some important questions hanging.
Will it be available to everyone or will there be restrictions based on postcode? What will happen to participants after the three years of the trial are up?
Considering we’ve been fighting the battle for PrEP access for so long it’s frustrating that we’re still not seeing full and assured roll-out.
Some activists remain dissatisfied, and with justification, but I am thankful that at the least there is now a plan forming to roll out access to 10,000, including not only gay and bi men but other key groups who will benefit from PrEP.
Important as this progress is we need to recognize that provision of PrEP on its own won’t prevent all new HIV infections.
Many won’t want to take PrEP because they won’t want to take preventative drugs or they don’t realize that they’re at risk. The prospect of having to take daily medication, potentially with side effects, is a cost higher than some are willing to pay.
PrEP also does nothing to prevent other STIs, such as gonorrhea or syphilis.
But just as PrEP isn’t going to work for everyone, neither do condoms. The truth is that for some men the cost of wearing condoms (in terms of loss of spontaneity, intimacy or sensation) is too great for the benefit of the considerable reduction in the risk of transmission.
‘We do want to prevent HIV infections, don’t we?’
You may not agree with that particular cost/benefit analysis, you may think it’s self-destructive or selfish – it’s clear that plenty of people do – but can you convince that individual that they’re wrong?
If PrEP isn’t the right prevention for you it doesn’t mean that it isn’t the best prevention for someone else. And we do want to prevent HIV infections, don’t we?
If STIs were a good a reason not to roll out PrEP, the same argument could be used to withhold a cure for HIV (if there were such a thing).
Preventing HIV and trying to dictate how gay men lead their sex lives aren’t interchangeable. Let HIV prevention be HIV prevention.
We must keep pushing the NHS and local authorities to ensure that PrEP and other prevention resources are supported.
We need to ensure that investment is ongoing to support educative work, testing programs, condom promotion and community engagement, and that people with HIV are given the support they need to adhere to treatment.
Just as it was a combination approach to HIV treatment that finally stopped people dying, so it will be a combination approach to HIV prevention which is most likely to achieve the goal of reducing transmission rates.
HIV infection has been a burden on the gay, bisexual and trans communities since the 1980s. Young gay men have never known a time before HIV. We can’t afford to be anything less than ambitious if we are going to end HIV.
Matthew Hodson is Executive Director of NAM. This article is Matthew’s personal view and should not be taken as representative of NAM as an organization.