Three snippets of information selected from today’s news.

Snippet I

Clinical trials are often controversial when they take place in developing countries where there is a risk that participants do not always understand what they are taking part in or where there is a danger that once the trial is over, they will be left alone to deal with possible side effects.

Now compare this 2008 study by David Wendler, Ph.D., and colleagues from the NIH Clinical Center reported in Medpage Today

HIV patients taking part in an international phase III randomized trial overwhelmingly hoped for a personal benefit, but a majority also saw themselves as helping society and science. Less than 3% said they felt they were guinea pigs or used inappropriately in a research process they did not understand.
To that report in The Washington Post two years older following the cancelation of an antiretroviral trial in Cambodia and Cameroon:

Objections have focused on the study’s subjects: prostitutes, usually poor, who critics say are being taken advantage of. They cite low payments, lack of information about side effects and no health insurance should something go wrong. In trying to get a better deal for those women, they have managed to slow the testing of what many scientists consider the best hope to stop AIDS in the underdeveloped world.

In the latter case, some NGOs, foreign activists and the media played a non-negligible role in confusing the issue if not pooring fuel over the fire.

Snippet II

The BBC reports on a study conducted by the The Medical Research Council, “which questioned 3,500 gay men, also found 40% of the 300 who tested positive for HIV did not know they were infected. Dr Lisa Williamson said more sexual risks were taken by men who had been infected with HIV for a long time. [...] According to the survey, those who knew they were HIV positive were statistically more likely to have unprotected sex than those who did not.”

Inappropriate education is blamed as one of the reason to explain this behaviour. If this is true in a developed country such as the UK where talking about sex and HIV is not that taboo any more, what about sex education in a less developed country…

Snippet III

The Bangkok Post (June 24, 2008) reports on a hotline counselling service that educates the public on HIV/Aids while helping those infected.

“Set up in 1991, the hotline service is part of Aids Access’s advocacy campaigns to provide accurate information about the disease and and instil public empathy for people with HIV/Aids. [...] Due to the stigma, most patients hide their sickness and do not know where to turn to, said Aids Access Director Nimit Tienudom.

Much of the problem stems from a lack of understanding about the disease and possible preventions, said Kamondhej Sowanna, home-care service officer and hotline staff member.

Inadequate information and misunderstanding often result in risky behaviours among the youth who do not realise the importance of safe sex until it is too late. Lack of state support for effective campaigns for safe sex is also to blame. The state budget has been reduced by half over the years, and has not been used to promote condom use among youths, he added.

According to the World Health Organization, less than five per cent of adolescents are being reached with adequate HIV/Aids prevention services in Thailand. Moreover, around 85 per cent of Thai youths have no awareness of the disease, even though most are at risk of becoming new cases themselves.”

Which takes us back to the first snippet… But in all cases, it is the same problem: inadequate, inaccurate and insufficient information combined with lack of political and public engagement.

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