Human rights are fundamental to living well with HIV.
There is considerable scope for us to drive the human rights agenda in HIV prevention, treatment and care strategies. Not only as a flag around which we might rally, but more importantly as a tool and lever to be used by and for individuals and groups, as a catalyst to obtain effective clinical and public health services.
HIV in the experience of those living with and affected by it, has followed so closely the track of inequality, poverty and discrimination that it is tempting to view it through the prism of rights related to specific groups. There is ample evidence that denial of human rights and failures of governments and other establishments to exercise responsibility to women, gay men, people who use drugs, and sex workers, fuel the spread of HIV and deepen the poor outcomes associated with late diagnosis, poor adherence, and inequitable access to services.
This has a general application, but if we bring this closer to home here in Scotland, and consider health rights and HIV standards already set out and published, we see how a rights agenda could get right behind a positive change for HIV and for people living with the virus.
Although social and welfare needs are relevant, those bodies dedicated to these topic areas are better placed than HIV organisations to pursue a policy and campaign portfolio. The most immediate and directly relevant area that concerns anyone living with HIV is the health and well-being agenda in the shape of clinical and public health services, and it is here that our energy and resources must be focused.
The “Charter of Patient Rights and Responsibilities”, based as it is in the Patient Rights (Sc) Act 2011, sets out what we can expect as NHS patients, including anyone living with HIV. It is a sound starting point from which to explore rights and responsibilities in relation to HIV. The headings cover access, communication and participation, confidentiality, safety, and feedback/complaints. Any overview of the needs of people with HIV will see at a glance how vital these are.
Equitable access regardless of where in Scotland we live or any other consideration defines what might be expected of HIV prevention, testing, treatment and care. Too often officialdom or finance departments mutter that it’s OK for example for the big health boards, or for areas where numbers are more manageable, but ‘it’s different here’. No it is not. Equitable access is not only a right, it is set out in commitments such as Scotland’s HIV Standards that if you need, for example, specialist clinical psychology support, you should get it.
Why is it that, unless human rights and responsibilities are set out explicitly in our national HIV strategies and standards, the natural tendency of systems and establishments will resist rights while heavily promoting individual responsibilities? It has a lot to do with where we have invested powers and influence in the planning and delivery of HIV services. That is why the second heading under the NHS Charter, ‘Communications and Participation’ is as important as the first. Were people with HIV able to participate with properly communicated information, then access to specific services would not be so patchy, and late or very late diagnosis would not be at the scandalous levels they are, around 53% and 31% respectively. It is lack of responsibility on the part of generic clinical services to inform themselves that we see too many individuals who present with indicator conditions falling through the net only because they (often women) do not fit the stereotype, or, to put it another way, are not within the target group of gay men on which so much attention is focussed.
So also we might work our way through the crucial topics of confidentiality, respect and safety which are, for us, touchstones of good care which determine how effective are our care provision and ability to live independently and well.
Our record in integrating human rights to our HIV strategies is weak. Ponder the fact that, despite nods to a human rights approach in ‘Respect and Responsibility’ Scotland’s sexual health strategy and the ‘HIV Action Plan’, explicit references are altogether lacking, as also in the Framework for sexual health and blood-borne viruses.
Other links must therefore be utilised in upholding and promulgating human rights in a health context. The context of human rights in health is well articulated in “Getting it Right?” as it describes a relatively well developed political, legal, social, economic, environmental and technological background. The resulting ‘Scottish National Action Plan” (SNAP) seeks to embed human rights into the integration of human rights to health and social care. This presents an opportunity for HIV strategies and frameworks to be more closely and clearly aligned with human rights.
Public Health England missed an opportunity to galvanise its vision of having nothing less than ‘the best HIV prevention response in the world’ with a strong human rights and equality structure. Instead it puts its faith in an injection of £20 million at a time when other health conditions recognise that plans must be delivered ‘within the financial realism that European society experiences’ (European Cancer Patient Bill of Rights, 2014). Investment in health is of course a driver of better health and one wishes the project success in seeking such resources.
Australia’s consistency in developing its HIV strategies within the human rights context is a model to us. In Section 6.4 of its strategy, it states, “Australia’s approach to HIV/AIDS has demonstrated the protection of human rights to be both compatible with and essential to the effective protection of public health” http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-national-strategies-2010-hiv/$File/hiv.pdf It follows effortlessly therefore for harm reduction, sex work decriminalisation, and equality to be woven into the actions and for success to follow.
Opportunities to build a human rights agenda need not await development of high-level strategies, important as they are. They present themselves day-to-day, because human rights affect our daily lives living with HIV.
People living with HIV need a Charter of Rights.