AIDS activisits in London -- Image: Robert Croma
Britain seems to repeat endlessly the failures of the USA, often with a delay of 20 or more years. This is especially so with the USA’s key failures in protecting the public good. With health and health-services, it is bad enough to lose to commercialism a principle of civilised society that has acted as a blueprint to the rest of the world (albeit a shoddily implemented one), but the loss of a centrally organised public health and medical system will not be recovered until there is another overwhelmingly obvious need for it, as after a World War or another global Depression. Even the USA, with a delusional-strength belief in financial profit as the be-all and end-all of society, is having to recognise the inability of the profit-motive to deliver essential social goods like health.
In all of this, perhaps we do have something to learn from the USA—not from its governments, but from its people. They are conditioned, like a battered spouse, to a system of unfettered capitalism as their only hope for a better life, not realising that liberation from it, while engaging greater fears in the short-term, is actually the only way out. The disenfranchised of America have known for a long time the reality of being unable to care for yourself, of living under a state that takes but does not protect. Privatisation of health-services moves us quickly in that direction of vulnerability at the same time as the USA, under Obama, is moving away from it. In the UK, we’re not used to having to look out for ourselves; the blessing of state-support has also distanced us from our community-responsibilities.
The UK government’s Big Society initiative is, in part, a cynical way of exploiting this potential for revived self-sufficiency at the community level, but it fails to understand that communities are not created by governmental fiat — and has all the further to go since Thatcherism did its best to destroy those that did exist. But there is an aspect that needs to be accepted and used for the best: the idea of participation in creating solutions, while refusing to shoulder the government’s responsibility for implementing and funding such solutions.
The days where we had to save up for months or years for needed treatment, borrowing from relatives, selling our needed assets—these are not memories for anyone under 80 but they are likely to be the reality for us as the state now abdicates its responsibility. We are not used to the idea of illness being a way to end up dying on the street if we don’t have a family to protect us. In the 1980s, it was a fact of life for American gay men, a despised and marginalised group in parts of America even today. But here too NHS campaigners can draw lessons.
Community response to crises
At the start of what is now a world-wide pandemic of AIDS, the American government under Reagan refused to respond. This was a knowing and purposeful act of negligence towards the community most affected by AIDS. As a consequence, the epidemic expanded far faster than it would have done otherwise and hundreds of thousands of people have died needlessly. As with the chronically ill and disabled today, the American gay community knew full well that it was not going to get help from the state and this galvanised the community to find solutions.
As a consequence, many different community-based organisations arose to meet the community’s needs, providing direct services in the form of buddies to people who were dying from AIDS (since the latter were shunned at first by the professions) or providing behavioural and social interventions to reduce risk and protect health. Whole systems of care were created out of community-participation and community-funding, with nothing from government. There was also immense activism to create political change and to find effective, ethical treatments. The particularities are different from today, but we have a lot to learn from the early AIDS-activists, both as examples and as warnings.
As in the UK, when we set up the Terrence Higgins Trust, the community-response was typically led by people who had no training in the necessary professional skills. In a short space of time, not only did we find the people in the community who did have those skills but we also learned some of them ourselves. What is important right now in the UK is organising an effective response to a government that is intent on abdicating its responsibility.
The activism of dying
In the America of the 1980s, the political response was made primarily by organisations such as ACT-UP, a noisy, fearless, taboo-breaking, dramatic, and extremely effective coalition of anarchic groups. They created political change in government and profiteering corporations through such acts of civil disobedience as ‘die-ins’ and political funerals with coffins containing the deceased being taken to the White House. They provided training to volunteers and to the media, helping them report in a way that would help people with AIDS, not just sell papers or garner political goodwill. ACT-UP was a major lever by which an increasingly inconvenienced government was forced to start to co-operate with the community, often via split-off organisations such as Treatment-Action Group, led by typically middle-class gay men who could speak the same political language.
But it was not simply a question of being dramatic in the streets. Pressure occurred through expert media-management led by gay men with jobs and extensive contacts in the media, working behind the scenes of their shocking street-demonstrations. That pressure had effects on the parts of government responsible for social health by the cogent scientific arguments made by other community organisations, again led by gay men with jobs and extensive contacts in academia, public health, science, medicine, and industry, who knew how the systems worked that they needed to affect. Pressure by the same organisations created change in policy, led by gay men who were in government and politics and who knew how the political systems worked. The benefits of being an identifiable community, and the urgency of healthy young people suddenly growing sick and dying, brought a focus and intensity to this response that I doubt the spirit of the Blitz could have touched.
England’s NHS today
The need for action today is different from the early days of AIDS, but only qualitatively. Today, a country’s entire health-service is being dismantled, affecting a population of over 50 million. The profit-motive contributed significantly to the deaths and illness caused by the neglect revealed in the Francis Inquiry and at the same time there is an attack on welfare to the disabled, because of which some people are also dying. Many more are suddenly living in misery and fear. Unlike AIDS, these recent developments affect us all and we are rapidly approaching the place where, as in the USA, illness in those without a family will become once more a quick route to dying alone on the streets.
In the UK today, accustomed to being provided for, we don’t have the same sense of urgency, we don’t have the same sorts of shared sub-cultural identity with people in positions of knowledge and power, and they don’t have the same motivations to act. The chronically ill and disabled are marginalised already and often have been for much of their life; linking up with those who know how to create change is not easy. It is even less easy to create change. But there are feisty activist groups, such as Black Triangle; there are families with an ill or disabled member who also have members of the family who work in media, public health, policy, law, government, etc, who know how the systems work and also know how to fashion solutions if they will come together. Connecting up the dots—a signal inability of repeated governments—is a sure way create an effective response to a wilfully deaf administration. Bringing informed, coherent, cogent, and embarrassing pressure to bear on an already-besieged government is essential to turn this juggernaut around.
New models for health services
However, simply saying ‘no’ and stopping the privatisation is not enough; it also requires providing alternative solutions to an NHS that has existed to serve its providers first and foremost since its inception. Privatisation is not simply a neoliberal’s dream of profit; it is also an attempt to change a partly self-serving health-service that no government has been able to change otherwise. Successful resistance to privatisation brings with it the need to provide effective alternatives.
If the NHS can be radically refashioned by privatisation it can also be radically refashioned to meet society’s needs rather than providers’. That means getting the physicians’ interests out of the NHS as much as managers’ and corporations’ and fashioning a nationalised, patient-centred system focused on health-effectiveness. That model will look very different from the current, expensive physician-centred one. Some of the causes of the privatisation lie among those protesting it; of course physicians, for instance, will object to the lessening of their professional power in a system that has been physician-centred since its inception in the 1940s, a power that has contributed so immensely to the stagnation and needless waste within the health-service. We can be sure that the physicians’ profession, with its own innate sense of superiority, will continue to object to any system that reduces its power, be it a pro-social or pro-market system.
The answer to this problem is the same answer to the problem of privatisation; it requires us, the public, to bring together all the resources available through our networks in public health, clinical science, community-activism, law, and media to respond to the government with sufficient clarity, focus, cooperation, and competence so that it sees another more preferable course of action. The response needs to be on several, coordinated fronts, led visibly by those affected most by the changes—i.e., people with chronic illnesses, disabilities, and those who care for us—and these need to deliver a set of coherent and cogent solutions. Good work is already being done by Queen Mary’s, Goldsmith’s, Birkbeck, and the Tuke Institute (where I am executive chairman) and these can provide expert input to various aspects of such a response if they can be brought together.
Finally, it is essential to keep the idea of ‘legacy’ in mind: these sorts of problems will recur in a different form every generation as society fails to learn the deeper lessons well enough. Ensuring that what you do now is something worth passing on, to help the next generation make a difference too, means that lessons are better learned and that there will be a smaller disaster next time.