The don’t die of ignorance campaign and the consequences
The AIDS campaign was the brainwave of Lord Norman Fowler and launched in 1986 by DHSS (Department of Health and Social Security). At the time the country was painfully aware of what was going on in the United States where rates of HIV infection were climbing rapidly and there were concerns that it could spread in the UK. Although HIV infection is primarily transmitted through bodily fluids and blood products, in the 1980s it was little understood and public policy focused on high risk behaviours within the population; drug users who were sharing needles and unprotected sex. Little attention was given to the vulnerability of people, such as those with haemophilia, whose health problems meant they were reliant on blood products but whose behaviour did not pose a public health risk. An important consequence of the public health campaigns which focused on the need to avoid the risks of unprotected sex and the importance of not sharing needles, was that prejudice against people associated with these behaviours became extended in many people’s minds to anyone affected by HIV.
We know that such prejudices were also present within the medical profession, as stories of stigma, ignorance and unkind treatment have been testified to in the Inquiry. Sadly, the main advice given to a patient who contracted HIV, was not to tell anyone under any circumstances. Media coverage referring to a ‘gay plague’ fuelled misconceptions and fear. We know from evidence to the Inquiry that if a patient’s community learned of their diagnosis they would often be cruelly shunned, barred from school, fired from work and in some cases have great scrawling graffiti spray painted on their homes.
There was no cure or effective treatment for HIV or AIDS at this point. Official predictions at the time were that the rates of HIV infection were going to rise and rise rapidly so a public health campaign was essential. The Government formed numerous committees around the issue. Many of us will recall the “Don’t Die of Ignorance” campaign and the infamous tombstone advert.
In the 1980’s it was difficult to have frank, non-judgemental public discussions on safe sex, whether heterosexual or homosexual. Visually the adverts were memorable; they were dark and frightening with very limited information being conveyed. The predominant public message was directed at changing risky behaviours rather than educating people about the little understood HIV.
Messages about HIV alarmed people and anyone affected by HIV was often assumed to have been involved in the high risk behaviours identified in public health campaigns. A leaflet was sent around the country and did contain more detailed information but that is not what people recall. The public information adverts provided the predominant image of AIDS and HIV. As one witness in London has pointed out, our attitudes are formed by the public information we receive. Lack of public understanding and fear meant that many in the general public considered all blood matters under the same umbrella. Being a haemophiliac became taboo overnight; it became as secret and isolating as the AIDS virus.
Those developing public information campaigns need to think more about the potential for negative unintended consequences. Stigma with HIV has improved but does remains a prominent problem. The UK HIV Stigma Index reported in 2017 that often individuals experience high levels of abuse, still feel isolated and one in five admit to having suicidal thoughts. We do now understand more about HIV and AIDS and education has improved, that helps to dampen but doesn’t extinguish the stigma. It takes a very short amount of time to dream up a dramatic image such as a grave stone; it takes decades to break down the damage that image has produced.
Blog by Stephanie Spencer