Outgoing National AIDS Trust boss reflects on 10 years of HIV activism

Deborah Gold (Image: Provided)
Deborah Gold (Image: Provided)

This week, I’m stepping down as Chief Executive of National AIDS Trust (NAT) after 10 extraordinary years. HIV looks so different today from when I started, making me reflect on all that’s happened over the last decade: where we’ve come from, where we are and everything we still need to do if we’re serious about ending new transmissions in the UK by 2030.

I started at NAT at a time of huge change for the HIV movement, with so much possibility just on the horizon. There were rumours, then anecdotal evidence, until three years in, the data showed two new trendlines that filled us with hope and excitement. The first showed that in England in 2016, for the first time since the epidemic began, over a fifth fewer gay and bisexual men were diagnosed with HIV than in the previous year. The second, even more dramatically, showed that in that in London in 2016, nearly a third fewer gay and bisexual men were diagnosed than the previous year.

With the confirmation that the number of HIV tests increased dramatically that year, we had certainty that transmissions were falling. A powerful illustration of what was starting to be seen in HIV: a recipe that works.

That recipe is driven by one foundational fact and three key factors that act as a virtuous circle, reinforcing each other, reducing how long people are able to pass HIV on and how many people are able to acquire HIV.

The foundational fact: a new understanding of HIV transmission, that someone who is on successful antiretroviral treatment, with an undetectable viral load, cannot pass HIV on through sexual contact. First mooted controversially in 2008, this was proved unequivocally in two clinical trials (Partner 1 and Partner 2), which in the words of the Principal Investigator Alison Roger revealed “a precise rate of within-couple transmission of zero”. This understanding launched the worldwide U=U (undetectable equals untransmissible) campaign.

The first key factor is how we applied our U=U knowledge. Policy change and evidence from clinical trials means that people are now prescribed with HIV antiretrovirals immediately upon diagnosis, bringing enormous health benefit to individuals, and decreasing the length of time someone might have transmissible levels of HIV.

The second factor is PrEP, the daily pill that prevents HIV. Its incredible efficacy was established in 2015 trials that were so successful they were ended early, because it became unethical not to offer PrEP to those people enrolled on the placebo arm. And although NAT had to fight (and win) two court battles against NHS England to secure it, PrEP is finally available on the NHS, so fewer people are able to acquire HIV.

The final factor in the virtuous circle is frequent testing, both amongst those who know they are at increased risk, and – by means of opt-out testing in hospitals – for those who don’t realise HIV might be an issue for them. In this way, the time between potential acquisition of HIV and access to treatment is reduced.

So there it is  – the recipe to end HIV by 2030. Fewer people living with HIV able to pass it on once diagnosed due to early treatment, fewer people able to acquire it due to PrEP, and an ever reducing time period between HIV acquisition and diagnosis, due to frequent testing, reducing the window where someone may unknowingly pass HIV on.

Easy, right?

Stretching my recipe metaphor to its limit – it’s one thing to have the recipe, but you also need to buy the ingredients and bake the cake. And in HIV, and public health more widely, sometimes the ingredients aren’t available or are off, and the oven has no fuel.

Messaging can be tricky. Although many (maybe even most) people living with HIV in the UK are free from symptoms or side effects, can’t pass HIV on, expect to live as long as anyone else and don’t rate HIV in even the top 20 things that matter most about them, there are many others with very different experiences: living with the side effects of toxic early medication, or a range of co-morbidities after late diagnosis.

People living with HIV are more likely to experience mental ill health, poverty and domestic abuse. Those with insecure immigration status may struggle to access wider healthcare (though HIV treatment is free for everyone). So maintaining a daily medication regime and contact with their HIV specialist can prove impossible – catastrophic for their own health, and also increasing the risk of passing HIV on.

There may be around 13,000 people who are not taking their medication – nearly three times as many as those estimated to be living with undiagnosed HIV, with no national plan to tackle this, despite ultimately being cost saving.

Many others could also benefit from PrEP, beyond the admittedly phenomenal number of gay and bi men who are currently accessing it, but this is not happening. Heterosexual men and women are far less likely to have their PrEP need identified or met: we are failing to maximise the benefit of this groundbreaking medication.

In 2012, political reforms moved public health responsibility from the NHS to local authorities, so clinical services, including prevention and diagnosis of HIV, and diagnosis and treatment of sexually transmitted infections, are now commissioned by local authorities. Central Government funding for these services has been cut by over a quarter yet visits to sexual health services have grown by more than a third.

This fragmentation of services, with HIV prevention handled by local authorities and treatment by the NHS means that the cost of investment in public health prevention usually falls to local authorities, whereas the treatment savings are felt by the NHS.

That led directly to the PrEP court case and the lack of investment in expanding PrEP access, finding and supporting those lost to care, and the delay in expanding opt out testing in hospital emergency departments.

So, while there is a real opportunity for England to be the first country to reach the goal of ending new transmissions of HIV by 2030, there are complex structural barriers in the way. But despite this, I am filled with hope and confidence that we will hit this goal.

That’s because for HIV, this is nothing new. Every single significant victory in HIV has come as a result of activism led by people living with HIV. From the early days where services and medication didn’t exist, activists built support networks, became treatment experts, protested to speed up access to medication, and pioneered health promotion. Clinicians dedicated their lives to this work, redefining what shared power means between patients and doctors, adding knowledge and perspective to a growing field. Public servants worked across local and national government, alongside voluntary sector organisations, building a powerful, unbreakable partnership that leads the way still.

It’s been there again and again, throughout my time leading National AIDS Trust, and further back to the beginning of the epidemic. It has never let us fail, and it won’t let us this time.

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