AIDS@30: 12—The leading-edge in services to people with HIV; the future of activism in the West

18 Nov 2011 01:51

It should be unnecessary to say that addressing the social and mental consequences of living with such medication-toxicities as lipodystrophy etc. lies outside physicians’ expertise, yet even in the so-called flagship clinics, the services have been and continue to be physician-centred and inadequate to address these realities. Therefore, people with HIV do what they can to soothe themselves, which are behaviours often associated with poor mood or anxiety and usually detrimental to health and social wellbeing. And it is these issues that drive disability, the inability to get on with daily life, the rapidly revolving door of the HIV and sexual health clinics, the increasing HIV infections, and the increasing HIV costs that are unsustainable long-term. Perhaps the saddest aspect of all this is that, not only are comprehensive biopsychosocial services essential in creating health for patients, they solid and repeated research shows that they also cost about half of what physician-centred services do.

So let’s look at the nature of current services for people with HIV in Britain, as one example:

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I’d like to draw your attention particularly to the fact that there is no measurement of health-outcomes, so there is no way to know how effective services are in making people healthy. As this is an area of expertise in applied behavioural science, I can only draw your attention back to the attitude of the government advisor cited earlier to show that measuring health-outcomes is anathema to physician-centred services. To such professionals, despite the rhetoric, it’s just window-dressing as they have the pills and that’s all people with HIV need. The significance of this is that we are going to run out of the ability to pay for physician-centred services to cope with the increasing burden of HIV and the community-based response is no longer there to cope with the consequences of this.

So, let me close now with a few comments about the future of activism in the complacent West. HIV activism has been a remarkable offshoot of a well-established historical phenomenon that started with the civil rights and the liberation theology movements in the Americas, particularly South America, and the post-colonial politics of participatory democracy, devolved governance, empowerment and political autonomy. The aim in such movements has always been to enhance knowledge-transfer to and from communities and social movements in order to regulate governmental misconduct and its failure to regulate and control abuses by vested interests.

Treatment activists should look to the past and learn the lessons that have slipped by in the relief of antiretroviral therapy. Treatment-activists should then look to the future and embody these lessons that clinicians, scientists, and civil servants are still unwilling to learn. The community should also emphasise the commonalities with the challenges posed by other chronic illnesses and the need for radically redesigned medical services, and knowledge-transfer across parallel organisations nationally and internationally. Above all, such comprehensively biopsychosocial services must revolve around public participation of a novel kind or they won’t survive.

The primary goal of participative medicine—when it’s performed as a service to society, rather than to its providers—is to be maximally health-effective. Medicine that fails to do so is therefore by definition bad medicine. And that is what we have in Western HIV services and particularly so in the NHS. With the increasing burden of HIV and other chronic illnesses, we can’t afford to fail to learn the lessons from 30 years of AIDS.

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