For several years, it has been the norm for those working in HIV prevention, testing, treatment and care to describe HIV as a long-term condition. It is standard language for us at NAT, and a phrase which some feel helps dial down the stigma which is still associated with HIV. But this World AIDS Day, we are calling on the NHS to go beyond the rhetoric and make sure people living with HIV in the UK get the healthcare services they need for now and the future.
A long-term condition framework for understanding HIV is not yet fully embedded within the thinking of the general public, the media, politicians - or our NHS. The framing of HIV as a long-term condition has not replaced the dominant image of HIV as a serious, communicable disease, which is ultimately fatal but for the constant innovation of medical science. The 'tombstone' image which comes out this time every year, like clockwork. (The truth of course, is, that many long-term conditions are serious and will lead to death in the absence of appropriate treatment.)
With 88,000 people accessing HIV care in England last year, it is not a common condition compared to the big five conditions named within NHS England's priorities for long-term condition services: cancer, diabetes, dementia, learning disabilities and mental health. HIV may be much less prevalent, but the HIV sector has championed many of the once-radical, person-centred approaches to care which are now being embraced by the NHS.
The absence of HIV and other communicable conditions (such as HCV) from NHS strategies for long-term condition management (or indeed, any of the not insignificant volume of content NHS England publishes on the topic) is surprising, given that the health service is increasingly concerned with prevention and early intervention to prevent the development or progression of serious long-term conditions.
It is also striking that these strategies for a sustainable health system rely upon concepts such as self-management, treatment literacy, shared decision-making, peer support and other principles of care which have been pioneered and championed in HIV - as illustrated by the case studies in our new report. NHS England's guiding Five Year Forward View document makes a case for prevention, supported self-management and strong communities. These have been the foundations of the UK's HIV response and there is a lot which the NHS in England could learn from the HIV sector in these areas.
The history of HIV medicine, the location of the HIV specialty within sexual health and/or infectious disease, and the still-stigmatised nature of HIV as a health condition, has meant we sit apart from the usual NHS way of doing things. Most notably, and despite significant efforts from HIV specialists to increase the role of general practice in the care of people living with HIV, it is not yet a comfortable condition from the perspective of most primary care professionals - the NHS's frontline for long-term condition management support.
NAT does not want the NHS to ignore what is special and what is unique about HIV. However, if in a time of major NHS reform we are to retain what is exceptionally good about HIV treatment and care and build upon the impressive legacy of the past three decades, it is vital that HIV is not absent from more mainstream conversations about the future of our NHS.
This is an excerpt from NAT's new report HIV in the Future NHS.