A Future for Health-Activism

A message to future health-activists on World AIDS Day 2013. [This is a mirrored article which was originally published in December 2013]

The recently launched film “How to Survive A Plague” shows us some of the story of HIV-activism in the USA in the 80s and 90s, through the lens of ACT-UP and the Treatment Action Group (TAG). It’s a remarkable and unprecedented story of guts, anguish, and loss. I’ve lectured at a few universities on the history of failures and successes in the response to HIV, providing my own perspective to the pandemic that started with setting up Europe’s first HIV-charity, the Terrence Higgins Trust, followed by my going on to become a clinician-scientist specialising in HIV myself, and eventually founding the Tuke Institute. Thirty-two years with HIV myself gives me some perspective to speak from.

The original, American groups of ACT-UP sought to create responsiveness in the US government to address the pandemic; among other things, they realised that treatment was necessary and that there was none. We had never had a lethal, human, retroviral disease before and we had absolutely nothing in terms of biotechnologies to address it. Today we do, and the path from there to here was paved by groups like ACT-UP and TAG. It showed what committed — and desperate — members of the public can do to create change through participative science and policy-making, especially when most decision-makers just don’t want to know.

I saw the film in a dark basement bar in mid-November, at a meeting organised by Dan Glass and friends at The Glass is Half Full. The guest of honour was Peter Staley, a central figure in this history and in the film itself, who discussed the film and helped create a discussion around what health-activism in HIV might look like in the future. What or who should be targeted for activist intervention and why? It’s clear that activist intervention is necessary today, when we have these miraculous biotechnologies and yet they’re not delivering on the promise — there a miracle that failed to save the life of treatment-activist Spencer Cox, for example, because pills-only health-services aren’t anywhere near adequate. We know this, but it seems that most clinicians and scientists don’t and neither do the pharmaceutical companies that provide the biotechnologies. Sounds familiar? So, can there be another wave of activism and, if so, what should the newer generations of activists be aware of?

In the screening-room, there were a number of people, including myself, who had been activists “a while ago”. Grey hair was fairly common among us — at least in those of us who have any hair. We still want to make change, but our approaches are different now. It was interesting to think what we were all doing now: scientist, journalist, community-services’ manager, historian, film-maker. Happily, we still respect street-activism for what it forces attention towards; without it, complacency would have free rein as it did in the earliest days. Activism is what gets a self-satisfied ass to move on, and there are far too many such asses around, particularly in health-services and non-profits that used to be community-based. But for us grey-hairs, activism has mellowed to something else. We’re not extremists, radicals, or zealots by any means. In fact, in our eyes, we never were. But we were certainly protestors and we still protest, if today we advocate through different means. What a few of the wider group of us have forgotten, in our quest for comfort, acceptance, and career, is that street-activism is still — and always will be — essential to help us focus on our goals for progress. It’s also helpful for us to remember that advocacy is not limited to progressive activists. For example, it would be equally reasonable to see much of what the British Medical Association promotes in terms of physician-centred health-services as ‘activist’ — that is, radical (conservatism), militant (elitism), and zealous (self-service) since the physician-centred model it proposes was outdated in 1970. To agitate for it now certainly meets the criteria for ‘activism’, albeit a radically regressivist one.

Sitting through the film, I was reminded bittersweetly of times and places I’d not have remembered otherwise. I went to some ACT-UP meetings when in New York, took part in demonstrations, and always admired (and was rather afraid of) ACT-UP’s brassiness. It spoke up with courage. The film also showed footage from the March on Washington, which I attended, and from International AIDS Conferences in Montreal and San Francisco, where I presented the first public health research on the futility of the HIV-immigration and travel-bans — and its lack of ethics. That led later to a tense Jim Lehrer Newshour segment with myself as an HIV-positive immigrant, the regressivist Senator Dannemeyer, a redneck physician from Arkansas (what on earth does a clinician know about public health?), and the supportive US Assistant Secretary for Health, Philip Lee. It’s worth remembering that the only reason it was even on national prime-time TV was because of the efforts of groups like ACT-UP insisting on awareness of the issues. From these and other experiences, it’s clear that more experienced advocates need to share their knowledge and skills with newer generations, not just around HIV and not just within one country, but around health-activism generally and internationally. Russia’s and Ukraine’s current problems around both HIV and equal rights are an HIV-redux, even as their soaring epidemics are driven largely by injective drug-use.

In that spirit, I have some words of possible advice to newer advocates and activists; perhaps some of them might be useful.

Firstly, be clear about: what your goals are and why; what the most efficient ways are to achieve them; what the key methods of leverage are to create systemic change; what the key points of political leverage are (which nerves are live and which are dead); what the needs and weaknesses of your targets are (is it brand-profile, self-image, or share-holders?) and how you can speak to their issues while aiming to focus their attention on yours; which are the most efficient and effective ways to create attention and pressure; which alliances you think you need most and why; who you can rely on, those who will never become allies, and who are those somewhere in-between; which issues are superficial or short-term issues (albeit important ones) and which are deeper, structural issues that need to change; how the current, very stable system will adapt to neutralise the change you wish to bring, and how you can best prevent that; and how you will translate short-term change into long-term change. That last is one we’ve never been good at.

In the fray, be aware and protect your biggest assets, which are integrity, transparency, authenticity, courage, cohesion, creativity, an acting on social values, ethical independence, a willingness to learn, and a lack of shame — which is quite different from a lack of introspection or insight, both of which are essential. Without protecting these assets, you become useless and pointless, if not destructive.

Be strategic about how to create your impact: avoid scattershot actions and also have a clear approach to stepped escalation. There’s little point in putting unnecessary pressure on targets if it’s possible to create change and alliances with less effort and conflict; it also helps sustain future co-operation. The other part of the balance required here is not to be co-opted by the dominant perspective simply because you’ve been allowed ‘inside’ and feel comfortable now. Your independence and autonomy are key to progress and to your integrity. A careful balance is possible.

Be clear on your methods, have multiple and varied methods, and make them work with others’ methods in order to punch above your weight. Don’t get stale and don’t allow targets to become numb to your interventions. The most effective tool of the street-activist is political embarrassment, which creates motivation for decision-makers to do something differently. But it can’t be through empty stunts; you also have to make your case evidentially — and the more strongly you can do that, the greater your effectiveness. This was one of the keys to the success of TAG in tandem with ACT-UP.

Join up with socially-aware scholars and academics because, today, things are so much more complex than they were 30 years ago. You need more sophisticated knowledge, methods, and skills. A few scholars and academics want to be engaged in creating change. You need to find those who do and who can translate their specialist knowledge into well-communicated and expert messages, delivered with the impact of street-activism where necessary. You need to make your case with impact, not just make an impact. Part of that means that you also have to demonstrate solutions, often provided through translating social, behavioural, and biological science into applied policy, supported by the motivation that street-activism provides to complacent decision-makers. This is where TAG showed its strengths: it led the way towards new types of clinical trials, community-based and ‘guerilla’ trials, and new biotechnologies that have helped to prevent millions of people from dying. Finding solutions needs the knowledge-base of scholars and the creativity of activists together.

Be clear about what you do when you are successful, even in little ways. The immense success in eventually getting effective medications to patients seemed to have stunned treatment-activist groups. They have had an essential and crucial focus that became unmoored from the larger picture of health-services; success left most treatment-activists without a goal and they then made poor new priorities in line with their self-image rather than in line with the next level of needs of the people they had been trying to help. A very human failing that we can learn from and avoid in the future. We should debate such questions as “Is advocacy for a cure for AIDS more important than advocacy for ensuring health-services help people get well and stay well in a way that can translate to other chronic conditions? Which would have far greater impact on patients and on society?”. It’s probably obvious that I think the advocacy for an AIDS-cure, although glitzy and sexy, has missed the point.

So, don’t lose sight of how your issue relates to a larger picture. This will help in developing alliances, in creating cogent arguments that are more generally applicable, and will also help in devising solutions. This is a key problem of HIV-activism to date, which has failed to see that pharmaceuticals are neither a solution to problems of clinical illness (other than preventing someone from dying) or to wider social, mental, and behavioural determinants of transmission, illness, and recovery. This is a crucial focus of activism in the future and it joins up well with the movement towards re-designing national health-services, especially for chronic conditions. HIV-activists have something to give and to benefit from through creating such alliances, as argued in a related piece.

Finally, I have to laugh when I say: be careful about accepting input from older activists and advocates. While we can share our longer experience, a usually wider perspective, sometimes greater clarity, and some essential knowledge and skills, there are a number of pitfalls when working with us. We don’t have the ‘oomph’ that younger advocates have (and we don’t like to admit it); we can also show outdated and ossified political ideologies, reduced relevance to the situation of younger people (and yet increased relevance to the situation of older people!), a smugness or patronising complacency, and a reduced ability to learn. In short, we’re older. We can be both a lesson and a warning, and we don’t like to think of the latter. While we do have a place and a role in framing future goals and road-maps, the real progress will now be driven by you. Do it well.

I hope that helps.

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