Welcome progress, but time to start doing things differently – what next for the HIV response in the UK

Dan Fluskey
17/06/2024

By Daniel Fluskey 

Ensuring there are high quality, equitable, and sustainable HIV and sexual health services across the UK has to be the bedrock of public policy that aims to end HIV transmissions and support everyone to live well with HIV.

But how are those services operating right now? What are the pressures on them, and what’s the experience of people accessing, or trying to access, testing, treatment and support? How will the future commissioning of services by Integrated Care Boards prioritise and deliver services? What is the complementary role of community-based voluntary sector services, and how can we stop, and reverse, the growing inequalities of experience and outcomes that we see far too often?

These are just some of the questions that National AIDS Trust have been exploring as part of the All-Party Parliamentary Group’s inquiry into the state of the UK’s HIV and Sexual Health services. In our answers, which are informed through engagement with UK-CAB, we highlight that although there has been significant progress in HIV in the UK in recent years, including a good quality of care that is rated highly by people living with HIV, important steps on the roll out of Opt-out testing, PrEP, and antenatal testing, this will be undermined and jeopardised if we don’t respond to the growing inequalities that we are seeing in the UK.

Tackling inequalities must be prioritised

Data produced by UKHSA on HIV monitoring, new cases and late diagnoses, and the Positive Voices research which looks at the experience of thousands of people living with HIV show that there has been good progress in key areas.

But that quality and depth of data also means we know what isn’t working – and there should be no excuse not to respond to it. No one can ever say that we didn’t know about the inequalities that our system is producing: a clear lack of progress for women, for minority ethnic communities, and for trans people, resulting in a disparity of experience, higher unmet need, and poorer outcomes for many people and communities.

The next Government has to prioritise ending inequalities wherever they exist, including in testing and diagnosis, access to PrEP, the availability of peer and mental health support, and to ensure that everyone living with HIV can have a good quality of life.

If we want to see change, then we need to do things differently

We simply cannot go on with a system that results in 40% of women attending sexual health services not being offered an HIV test (compared to 23% of gay and bisexual men), and one in which Black African people make up 28% of new HIV diagnoses despite being only 2.4% of the UK population. There are also marked inequalities in late diagnoses and for people who are not in HIV care – this is particularly significant as these people experience worse health outcomes. This has to change, most importantly because it’s inequitable and unjust, but also because the only way for the UK to achieve its target of ending new HIV transmissions by 2030 is for it to be real for everyone.

So, how do we respond to the inequalities we see? We must recognise that they are a feature and product of the system that we have – not an anomaly. And if we want to see a different outcome, then we need a different and better response – one that embeds the co-creation of services, meaningful engagement with communities and is based on lived experience, as well as ensuring the sustainability of smaller, local, and community-led voluntary sector organisations who are such a crucial part of the UK’s HIV response and provide specialist and responsive support.

We need to build on the foundations of success – PrEP, testing, high quality of care – with a strategic approach and sustainable funding that prioritises equity and delivers for everyone. Looking ahead, Integrated Care Boards could play a role in England – but while the opportunity for locally informed and responsive commissioning of services is there, it is by no means a given. There is a risk that HIV services will not be prioritised, particularly in low-prevalence areas, and that inequalities and post-code lotteries of services become entrenched. And whilst devolved nation Governments have shown welcome leadership for their HIV response through the development of national plans, further interventions and investment are needed to ensure services meet national BHIVA standards.

A new Government needs to take the right steps forward

The calling of the general election means that by the summer we’ll have a new UK Government, and an opportunity to get these ideas into policy. Together with partners, clinicians, and the HIV sector, we have published an HIV and Sexual Health manifesto calling on the next Government to realise the 2030 goals by bringing in six key recommendations.

We need to see:

  1. an expansion of opt-out HIV testing
  2. the introduction of a national online one-stop-shop for PrEP, HIV and STI postal testing
  3. the creation of a national re-engagement programme for people living with HIV who are not in care
  4. the provision of year-on-year, above inflation public authority health grant funding
  5. the development of a national sexual health strategy
  6. justice for those impacted by the contaminated blood scandal and the full implementation of the infected blood inquiry’s recommendations.

It’s fantastic to see key areas from our sector manifesto be picked up in party manifestos, with welcome and positive commitments on HIV; both the Conservatives and Labour set out the priority of refreshing the Action Plan to end new cases of HIV by 2030, the Lib Dems include a commitment to increase funding for the public health grant, and the Green Party add access to PrEP as part of their 2030 goal.

If the next Government takes forward these recommendations, and builds the next HIV Action Plan on the principles of equity and with a focused and targeted approach to do things differently to ensure that everyone, in all communities, receives the right level of care and support, wherever they are in the UK, then we will have the best chance possible of ending HIV transmissions in the UK. National AIDS Trust will be there every step of the way to do our best to make sure that happens.

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Jun 17, 2024 By santi.agra