Fighting the myths about HIV/AIDS

But with HIV/AIDS it is different. In this situation, myths can kill — and frequently do. Whether it is the idea that HIV/AIDS can be cured by sleeping with a virgin, or even — less pernicious, but no less misleading — the widely held idea that an effective cure already exists (leading to a relaxation in precautionary measures), belief in such myths costs lives. Conversely, public education is needed to combat fears that science-based interventions, such as vaccines and microbicides, will not necessarily offer protection, misconceptions that can cause difficulties when recruiting volunteers for clinical trials.

Even the less obvious myths, for example that HIV/AIDS can be transmitted through coughing or merely touching someone, can inflict enormous damage. By implying that people should keep away from those who are known to be infected, such myths encourage the latter to remain silent about their infection. And this in turn stops them from taking measures to prevent the infection being spread to others. The worst aspect of society's all-too-common tendency to stigmatise HIV/AIDS victims is that it drives the disease underground, where it become even more inaccessible to both treatment and prevention.

Responsibility of communicators

All this places an unprecedented responsibility on science communicators. For the first line of attack against mythology is scientific fact. The wife of Kenya's president, Lucy Kibaki, underlined this at a meeting in Nairobi last week, when she argued that effective reporting could go far towards eliminating the cultural beliefs and social attitudes that have continuously hindered efforts to curb the spread of HIV/AIDS in her country.

Kibaki emphasised that efforts to enlighten people on the various aspects of the disease, in which journalists had an important role to play, were needed to change public perceptions, and that this would in turn help reduce the spread of the disease and the suffering associated with it. It's a lesson that needs to be widely acknowledged. For unfortunately, in many parts of the world, the situation seems to be getting worse as various mythologies tighten their grip.

There has been some positive movement. Earlier this year, for example, there was widespread relief in the world's medical community when President Thabo Mbeki of South Africa backed away — at least in public — from his previous view that HIV does not necessarily cause AIDS. This false idea that had unnecessarily held back a full-scale attack on the disease in the country for several years.

But elsewhere, some of the myths seem to be growing in popularity. A survey carried out last year for the National HIV/AIDS/STI Prevention and Control Programme in Jamaica, for example, found that 37 per cent of men believed (wrongly) that HIV can be contracted from mosquito bites; in 1996, this was believed by only 26 per cent. Similarly the number of men who believed that HIV can be caught from public toilets, another widely held myth, had more than doubled, from 13 to 32 per cent, over the same period.

These myths may be relatively innocuous. However in places where HIV/AIDS has not yet reached epidemic proportions, but is threatening to do so, some of the ’earlier myths’ prevail, occasionally with devastating consequences. One is that HIV/AIDS is exclusively associated with high-risk groups such as sex workers and men who have sex with men. This is still a powerful misconception in countries such as India and China, where HIV/AIDS sufferers complain of social ostracism, and have even been subjected to violence.

Recent surveys in India, for exmaple, reveal that HIV/AIDS is spreading through the population at large, including to housewives whose only sexual partner has been their husband (who may have been infected by a sex worker). There is often a tendency, however, for such women to be discriminated against and accused of unfaithfulness, rather than given compassion and support. More awareness through the media that HIV/AIDS is a general problem would help remove stigma and discrimination.

The need for fact-based coverage

All this places science communicators in the front line of the battle against the epidemic, not only in areas (such as much of sub-Saharan Africa) where it already exists, but even more so in those countries in which it is now spreading. Journalists in particular have a key role to play in this process of public sensitisation One of their responsibilities is to raise awareness, through their coverage, not only of the basic statistics of how HIV/AIDS is spreading, but also of the known routes of infection.

Another reason for encouraging more effective science communication is that it helps the public to understand the limitations of science and slowness of scientific progress. This in turn can generate a more critical attitude towards some the hype that can surround public discussion (for example, of potential vaccines or microbicides). If the public could be convinced that there is unlikely to be a ’magic bullet’ to cure or prevent HIV/AIDS — at least not in the near future — efforts to promote existing preventative measures would be more likely to succeed.

Thirdly, accurate reporting of the aims, safety aspects and ethics of research into potential vaccine or microbicides is required to overcome widely-held myths and misconceptions that can develop into hostility. This is already happening in Africa, and has become a major focus of initiatives in India being led by groups such as the International AIDS Vaccine Initiative. Even greater efforts are needed in countries such as China, where public knowledge about the nature of HIV/AIDS, although improving as a result of the governments increasing openness, still remains dangerously low — a reflection of many years of official reluctance to discuss the issue openly.

The need for capacity building

There is growing awareness that public education campaigns, backed by accurate and knowledgeable press coverage, can play a key role in increasing the social acceptability of promising science-based avenues of both prevention and treatment; indeed, they are essential if the epidemic is to be successfully tackled. At SciDev.Net, we have acknowledged the critical need to enhance capacities in this field by organising two workshops over the past year in collaboration with the United Nations Educational, Scientific and Cultural Organisation (UNESCO).

Both of these workshops focused in particular on the possibilities being opened up by the Internet for enhancing access to scientific information. The first took place in Kampala, Uganda, and was attended by 15 participants from eastern and southern Africa. The second was held last month at the M. S. Swaminathan Research Foundation in Chennai, India, and attracted 18 participants from seven Asian countries.

Each of the workshops proved to be highly rewarding events for all those present, participants and tutors alike. Yet the discussions that took place in each location only emphasised the scale and urgency of the task that science communicators face in this field. According to a report issued last week by the World Health Organisation and the Joint United Nations Programme on HIV/AIDS (UNAIDS), a "wave of HIV epidemics" is threatening Asia and Eastern Europe, with China, India, Indonesia and Russia at particular risk of spread of the disease due to unsafe sex and injecting drug use (see HIV epidemic threatens Asia)

Only a mass mobilisation of all those concerned about the future of the developing world can mitigate the full impact of such a tragedy. Science communicators must stand ready to play their part.

David Dickson is director of the Science and Development Network (SciDev.Net). Julie Clayton is SciDev.Net’s HIV/AIDS coordinator.