Around one-fifth of these people are undiagnosed and unaware of their HIV status. Of the people who are diagnosed and on anti-retroviral treatment, around 90 per cent are likely to have the activity of the virus fully suppressed. Yet in spite of this track record – including among the best access to, and maintenance of, effective treatment anywhere in the world – the incidence of new cases of HIV in England is actually increasing. And so we need to increase our effectiveness in preventing HIV infection.
Both prevention and treatment services were previously overseen by NHS local commissioners, but the 2012 health reforms have fragmented responsibilities for commissioning HIV services. Local authorities are responsible for testing and prevention, for social support, and for diagnosing and treating sexually transmitted infections. NHS England is responsible for HIV treatment. Clinical commissioning groups (CCGs) are responsible for testing and diagnosis within other treatment episodes (for example in maternity care) and for treatment of most co-morbidities (such as hepatitis). CCGs and NHS England share responsibilities for services in primary care. And the need to make this complex system work, especially to do more on prevention, comes at exactly the same time as unprecedented financial pressures on the NHS, local authorities and the voluntary sector.
Let’s not forget the people at the heart of all this: it’s not about policies and services in the abstract. People living with HIV, or at risk of acquiring it, must navigate this complex system to get the support they need to manage their health and wellbeing. Many will face the continuing reality of stigma and discrimination, and the ways in which HIV affects different population groups means that its impact is even more pronounced on those who are already marginalised or vulnerable.
The fragmentation of responsibilities for HIV services makes it difficult to offer co-ordinated and person-centred care, and also creates confusion over responsibilities and accountability. Now there is another addition to this picture, which may help to bring clarity in the longer term but right now it is a prime example of how this complexity has created confusion.
NHS England has lost a judicial review that challenged its view that it was legally unable to fund the use of anti-retroviral drugs (pre-exposure prophylaxis or PrEP) for prevention as well as for treatment. The case rested on a disagreement over who this responsibility lies with – NHS England or local authorities. The fact that it has ended up coming before the courts shows that the risk of confusion over responsibilities is real rather than theoretical. The court found that in addition to local authorities’ roles in prevention, NHS England also has a broad preventive role in order to achieve its statutory objectives and meet the NHS Mandate. So it can in fact fund medicines for PrEP, just as it already funds the use of the same medicines as post-exposure prophylaxis. The questions now are: how NHS England and the 152 local authorities can ensure their respective roles in HIV prevention join up effectively to bring down the national trend of more people with new infections; and how to ensure prevention opportunities are not missed while the implications of the ruling are being worked out and NHS England decides whether to proceed with an appeal.
At The King’s Fund we have advocated services working together across an area to develop the best services for their community, rather than each having a ‘fortress mentality’. We have also argued for empowering local services to reform from within rather than relying on top-down direction, regulation or market forces to deliver high-quality care. The dispute over the funding of anti-retroviral drugs for prevention illustrates the challenges of doing this in the absence of an effective strategic and integrated approach to commissioning, especially when the structures are so complex and the relationship between local decisions and national strategy so loosely defined. Our project on the future of HIV services in England, supported by the MAC AIDS Fund, will explore this in-depth and will inform ways of thinking that find a way through the complexity. In doing so, it will provide insights for other services facing similar issues. And it will continually seek to look through the eyes of people affected by HIV, to promote person-centred thinking that puts their needs and wellbeing first.