By Adam Freedman

Last week, I had the exciting opportunity to attend the British HIV Association (BHIVA) Spring Conference in Gateshead on behalf of National AIDS Trust. The conference was a great chance to meet with clinicians and people from other HIV community organisations, and to learn about the latest developments in HIV medicine and healthcare. As I reflect on everything I learned, a running theme through many of the conference discussions was a simple one – a shared desire to improve the experiences of people living with, or at risk of acquiring, HIV within the healthcare system.

The main highlight for me was having the opportunity to present our joint research report ‘Not PrEPared’, about barriers that people are experiencing in attempting to access PrEP, HIV prevention drugs, on the NHS. Shockingly, the report found that only 35% of people who had attempted to access PrEP on the NHS were able to do so. It is imperative that we fix this, as PrEP is a key tool to reach our 2030 goal of eliminating all new HIV transmissions in the UK.

Although speaking in front of an audience of hundreds was a nerve-wracking experience, the research was received very well. I had several interesting discussions with clinicians after the presentation and felt that people were responding to our call to action to ensure that our recommendations are taken forward. There is now a growing sense that access to PrEP is unequal, but that clinicians and community alike want to do what they can to rectify this.

There was also an important session on PROMs (Patient-related outcome measures), and how we integrate these into HIV care. PROMs allow patients to define the health outcomes and experiences in their treatment that matter to them. The presentations demonstrated that patients have been more enthusiastic about including these in HIV care than clinicians historically, but the presenters called for their increased use in HIV care.

I was most struck in this session by a comment from a person living with HIV since the early years of the HIV/AIDS pandemic. Whilst today, people living with HIV who are on treatment are virologically monitored to measure their viral load, this person felt that quality of life has taken a back seat compared to the years before effective treatment. This is something that should concern us all.

At NAT we are determined to get quality of life back onto the agenda through the Europe-wide HIV Outcomes programme, for which we are representing the UK. This will be a real policy area to watch in the next year and beyond.

Another great session was on ‘The Care Cascade’ – what we need to do to keep people in HIV care. Some individuals find it hard to stick to certain treatment regimens or find the health and care systems overwhelming. There was a real call to action to the audience to reframe the language when discussing these situations from “failure to adhere to treatment” towards “failure of treatment”, and to take the blame off the person living with HIV for whom a treatment regimen is not working. This, together with some real, practical solutions for how services can re-engage with people who are not in care, such as targeted but welcoming public health campaigns and embedded peer mentorship in sexual health services, were suggested.

But what about the people who are lost to care along the way? Or those who are unaware that they are living with HIV in the first place? One topic that came up repeatedly was the pilot opt-out HIV (and hepatitis) testing programme in A&E departments. This programme launched in 2022 in areas of ‘very high’ HIV prevalence in England: London, Manchester, Brighton and Blackpool.

The programme has been a resounding success: over 450 people have so far been found to be living with HIV and re-engaged with care so far. As the current programme only covers four cities, we are calling on the Department of Health and Social Care to expand HIV and hepatitis testing to more emergency departments across the country. There were several pieces of research on this pilot programme presented to the conference, and the appetite was strongly in favour of expanding it further.

So, in summary, we need to: increase access to PrEP, expand opt-out HIV and hepatitis testing to more A&E departments, integrate PROMs into all HIV care, focus on the quality of life of those living with HIV and to ensure that they remain in care wherever possible. The calls to action have been issued – it is time for clinicians and community alike to come together and make sure they are heeded.