Let me be clear that when I talk about a desperate race, I’m talking about that undertaken by people with HIV and AIDS, not drug companies.

The first case of AIDS in the West was diagnosed in 1981: the first anti-viral treatment – AZT – was not available until 1987. In that intervening period we watched our lovers, our friends, our siblings and our children die. And these were often protracted and extremely distressing deaths involving, for example, massive weight loss, loss of mobility and/or disfiguring Kaposi’s Sarcoma lesions. The arrival of AZT didn’t really have much of an impact either.

To say that people were desperate for something that stopped – or at least slowed – this appalling progression would be an understatement. So, rather than wait for the drug companies to decide that there might be a profit in AIDS treatments, people with HIV and AIDS started finding their own solutions. These ranged from the unconventional (in some cases, quite bizarrely so) to the more scientific.

And, given that the cause of AIDS wasn’t identified until 1984 (and, even then, not accepted by everybody), who was to say that something that would eliminate all AIDS symptoms wouldn’t be found entirely by chance? At the end of the day, hope was all we had so anything that might offer even the slightest glimmer of hope was embraced by a desperate community.

This ad from a San Francisco bath house suggests behaviours to stay healthy

At the more scientific end, there were strategies that aimed to strengthen the body’s immune system, since that was clearly under attack. These included ‘clean living’ – a notion that ranged from getting enough sleep and maintaining a good diet to detoxing caffeine, alcohol and food additives. Stress was also recognised as an immuno-suppressant so a number of AIDS projects ran workshops of meditation, yoga and massage.

At the more esoteric end there were practices such as ‘somatic’ therapies, based on the view that illness was a manifestation of unresolved emotions. One of the most famous advocates of this was Louise Hay, who proposed in her book You Can Heal Your Life that the answer to AIDS was to develop “a new thought pattern.” (In the interest of balance, I should say that Hay attracted a large number of followers both within and outside the queer community, including people with HIV or AIDS. My own view is that she was one of many who preyed upon vulnerable people.)

People with HIV and AIDS were also trying a range of substances. Few, if any of these, had been subject to any sort of scientific testing but this, again, simply highlighted the absence of any offerings from the drug companies. The list of alternative treatments was extensive and ever-growing so I shall list only a few of them here by way of illustration. Their benefits were perceived as being anti-viral or immuno-therapeutic – or both.

• Aloe vera – anti-viral and immuno-therapeutic
• Bitter melon – a Chinese vegetable; drinking juice extracted from the leaves is said to have anti-viral and immune-modulating effects
• Chinese cucumber – from the same family as bitter melon, also known as Compound Q. This is said to have anti-viral effects
• Hypericin – the active ingredient in St John’s wort. Said to have anti-viral properties
• Citrus seed extracts – said to have anti-viral, anti-bacterial and anti-fungal properties
• Curcumin – an active ingredient in turmeric. Said to have anti-viral properties
• DNCB – a benzene-based chemical used in photo finishing and air conditioning. Its main benefit is that it is immuno-therapeutic but it has also been used to treat certain types of warts associated with HIV infection.

As I have already said, the exploration of new avenues of treatment was the result of desperation and frustration with the conventional medical model. But it was also an indication of the extraordinarily high level of participation in, and ‘ownership’ of the treatment agenda by people with HIV and AIDS.