If we take the current approach to rights and responsibilities in HIV, what exactly are the outcomes for the individual? And is it achieving the aim— to get people well and staying well? HIV rights and responsibilities is currently facing a schismatic reality— a post-Denver principles era grappling with the rights owed to the individual; a time in history that sees regress into previous paternalistic frameworks of health service delivery. We feel like we know what our claims are, but we struggle to apply them to this model of health service. Or perhaps, the system of getting the diagnosis, then receiving the prescription does somehow tick the boxes of rights, but leaves us with untrained muscles of responsibility. Of my ability to actively pursue my own physical health. But whatever the case may be, recent statistics (the Health Protection Agency December 2012 report) show us that something is not quite right. Somehow the link between the current framework of HIV rights and responsibilities and the well-being of the individual is broken.
What seems to be going wrong? If we look at a general (and, albeit, simplistic) overview of current treatment for HIV, we see this: The individual is tested diagnosed, given medication, perhaps options of support and internet services, and is sent home to commence recovery. Information is downloaded, though not essentially retained, and the person is left to process the information in the solitude of their homes. And threads of stigma, self-stigma, weave their way into the equation, potentially creating a dangerously isolating situation for the individual. Because they were diagnosed, then ‘treated’, and therefore expected to get well.
But the problem is, as many activists have pointed out, that this is a reductive method of seeing the health of the individual. It is incredible that antiretrovirals are able to enable longevity and wellbeing, but filling a prescription and diligently adhering to it is just one part of the equation, because we are more than just a physical body. And that is if we are able to adhere to the strict guidelines of ART (antiretroviral treatment) consistently amidst the fluctuating busyness of life.
I think that the current model leaves us with some serious questions— ethical questions rooted in the underlying definitions of health out of which our health services operate. Is our right merely a right to access medication? Or do our rights encompass more than this, because we are looking at the individual as more than just body. If we really are a biopsychosocial being, do our rights then need to be extended to include access to psychological and social tools to enable wellbeing?
This is a fascinating study— and I think that HIV is in this case an extremely effective case example that can be used to assess our general understanding of health-services and conceptualisations of what it means to get well. If we are just bodies looking for medication, then this current approach could be effective. And indeed it would be remiss to not highlight the profound gift of being able to access medical services that provide medication. But there is also something lacking in this current approach, and I think that this is worth discussing further. Because we want services that see the whole person, and enable that whole person to get well, resulting in, I would hope, a greater likelihood of staying well in the long run. And it’s for reasons like these that I wonder if we shouldn’t probe a little deeper and see if there is more that can be done, more responsibility assumed by the individual, while putting effective supports in place to enable this responsibility. These supports being psychological services such as counseling and group services, social groups that speak candidly about sex and rights and responsibilities, and a system that comes alongside the individual and enables them to pursue their own well-being in community rather than in isolation. Encouraging this model would, I hope, create a more deep-rooted and holistic method of health that can enable individuals with HIV to get well and then to stay well.