World AIDS Day: how AIDS activists changed medical research.

Powered by Guardian.co.ukThis article titled “World AIDS Day: how AIDS activists changed medical research” was written by Vanessa Heggie, for theguardian.com on Sunday 1st December 2013 09.00 UTC

Outbreaks of epidemic diseases, especially diseases that appear to be new, can seriously affect the organisation of human societies – the Bubonic plague forced changes in social organisation and agriculture in Europe, while diseases like small pox, carried by Europeans, devastated many indigenous communities, particularly in the Americas. Although it is too soon to analyse the long-term effects of HIV/AIDS on populations and nations, we already know that it changed the way pharmaceutical companies conducted medical trials.

Many of these changes to research methodology were demanded by patients and their support groups, rather than by doctors or researchers. In some cases these alterations clearly accelerated the licensing of palliative drugs and made effective treatments available to people who had previously been denied access to them. At the same time the changes did not necessarily benefit every community equally.

The Real World vs. The Clinical Trial

The fundamental problem was getting treatment: with no existing effective drugs or therapies available, virtually the only way for HIV+ people to (legally) get drugs to delay the onset or treat the symptoms of AIDS was to enrol on medical trials and hope to be given a substance that worked. But the so-called ‘gold standard’ for medical research, the randomized controlled trial, threw up huge barriers for many HIV+ patients – some people were rejected because they were the wrong age, or gender, or because they were taking other medications, while even those who were enrolled still faced the possibility that they’d be given a placebo and not a functional drug at all.

Sociologist Steven Epstein’s 1996 book Impure Science gathers together the stories of activists and campaigners who argued that the practice of medical trials needed to be reformed. The book’s title partly refers to the problem of the ‘pure’ subject, that is the contradiction between the need for simplicity and standardization in trials and the messy reality of human lives. Experimental subjects needed to fit neatly into particular population categories, follow certain lifestyles, and ideally be free of all confounding substances like other medications (often those who’d taken part in earlier medical trials were automatically rejected). One of Epstein’s examples is a man who was taking the first anti-AIDS drug, AZT, to control the onset of his AIDS-related dementia, but also wanted to try a drug to prevent him going blind due to an AIDS-related eye infection: his doctor said he would have to stop taking the AZT in order to be enrolled on the second trial. The man told anti-AIDS activist Rebecca Smith that he felt

he was being asked to choose between his vision and his sanity

Luckily for this patient, Smith was able to negotiate a place for him on a new trial comparing the interaction of AZT and the anti-blindness medication. Her success was partly because of the tactic that many AIDS activists took up with amazing success – dealing with scientists and doctors on their own terms. Activists deliberately read up on the disease, on the latest medical theories, on the theory of scientific practice, and on research methodologies. Frustrated by the slow progress of trials, they suggested abandoning the placebo in favour of other forms of clinical trial that could fast-track treatments. These included using historical control groups (i.e. using results from previous studies as a control group for new studies), or employing sophisticated statistical measures to compare two drugs at the same time, with no need for a placebo.

Reforming Medicine: How to Survive a Plague

Part of the reason AIDS activist groups were so good at persuading medical researchers to try new methods was that the campaigners came from a community which had experience of arguing with the medical establishment. Less than a decade earlier homosexuality had been removed from the Diagnostic and Statistical Manual of Mental Disorders (DSM) after a long and sustained campaign against the idea that being gay was a form of mental illness. This earlier campaign meant firstly that some individuals affiliated with the American gay community had already taken part in a fight to change medical pracice. Secondly there was an existing community based around pressure groups ready to go to bat against a new enemy. ‘How To Survive A Plague’, a film about two of these pressure groups – ACT-UP and TAG – has recently been released, and outlines the extremely successful methods used to force changes in trials and licensing.

Not everyone was represented by this existing community. It was not until the 1990s that women, ethnic minority groups and haemophiliacs were routinely given a voice in mainstream AIDS activism. When they were represented, their futures were changed: at first women were often excluded from research, in part because of fears about possible effects on any pregnancy, and it was through the work of ACT-UP in particular that they began to be enrolled in clinical trials. Children proved a harder group to include, and continue to be hugely underrepresented in trials of all kinds of drugs. The consequence is not only that women and children were unable to get early access to treatment, but also that the drugs which were licensed had never been tested on, and might not be suitable for, female, pregnant or immature bodies. More recently there have also been problems ensuring that the switch from AIDS as a disease we ‘live with’ rather than ‘die from’ occurs across the globe, and not just in the richer West.

HIV/AIDS was initially strongly associated, in public minds and scientific work, with gay men, which led to disastrous stigma and the neglect of other HIV+ groups (especially other marginalised groups such as sex workers and intravenous drug users). Similar problems of stigma and neglect occur in other diseases too – for example the suggestion that the focus on ‘sexy’ cancers like breast carcinoma leads to the neglect of other less ‘sexy’ cancers, like lung or colon; or the suggestion that the focus on young women and their breasts distracts from the fact that breast cancer is more common in older women (and, of course, sometimes men).

There is no doubt that patient advocacy groups and disease charities can create extraordinary revolutions in the practice of medicine; but an alert population also needs to consider the patients whose voices are not yet heard.

guardian.co.uk © Guardian News & Media Limited 2010

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About Carl William Brown

I'm Carl William Brown a holistic teacher, a webmaster, a trader, and a writer of aphorisms and essays. I have written more than 9,000 original quotations and at present I'm also working at my only novel, Fort Attack, which is also a wide and open blog project. At the moment I'm teaching English in a secondary school, but up to now I have done a lot of other things as well, both in business, educational, sport and social fields. Some years ago, in 1997 following the examples of the Rotary or the Lyons Clubs I founded the Daimon Club Organization to promote every sort of activities, creativity, art, literature, new technologies, informatics, business and marketing, public health and education and to meet new friends with these kind of interests.
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