It has been estimated that 30 percent of people living with HIV in the European Union (EU) are unaware of their infection . As undiagnosed patients cannot benefit from early treatment and may unknowingly transmit HIV to others, this situation poses a major challenge in the fight against the HIV/AIDS epidemic.
The obvious question in response to the above is: why are these people not diagnosed? To find an answer, researchers from the International Centre for Reproductive Health at the University of Ghent in Belgium are undertaking research across the EU, in collaboration with institutions in Estonia, Poland, Portugal and Finland, and with funding from the European Centre for Disease Prevention and Control (ECDC). To launch the study and to strengthen the plan of action, HIV experts from across the EU and further afield, including clinicians and representatives from civil society, gathered at the ECDC in Stockholm on 21 and 22 January 2008.
The impetus for the research project was the ECDC’s workshop on priorities for HIV prevention in the EU in October 2006, which concluded by calling for efforts to ensure that more of the people who are at risk of HIV infection in the EU are tested and more of those who are HIV-infected diagnosed, so that they are able to access treatment and care and avoid transmitting HIV to others . Several related topics had been addressed in a conference on optimal testing and earlier care in Brussels in November 2007 , the main themes and conclusions of which were summarised in a presentation by Ton Coenen of Aids Action Europe, one of the organisers of that event.
Jessika Deblonde from Ghent University presented the outline of the study, which has three main objectives: to map current HIV testing policies in the EU countries; to identify the practices and barriers to testing and counselling; and to develop a theoretical framework to improve the effectiveness of HIV testing and counselling. The meeting was strongly linked to the second objective, with presentations from different perspectives feeding into break-out sessions that raised questions to be further explored by the survey.
One interesting presentation came from outside Europe: Ronald Bayer of Columbia University offered a lucid and compelling overview of the debate over the ethics of HIV testing in the United States (US) and elsewhere since the virus was identified in the 1980s, drawing out in particular the influence of improved treatment. The ethical debate is now at a crucial juncture: in late 2006, the US’ Centers for Disease Control and Prevention (CDC) revised their recommendations for HIV testing for adults, adolescents and pregnant women in healthcare settings , in a move that has been seen as an end to so-called ‘exceptionalism’, whereby HIV was considered subject to different ethical parameters than other diseases. Guidelines on provider-initiated HIV testing and counselling in healthcare facilities issued by the World Health Organization (WHO) and the United Nations Joint Programme on HIV/AIDS (UNAIDS) in May 2007  have echoed the shift towards an ‘opt-out’ policy.
Tim Chadborn of the Health Protection Agency gave an impressive presentation on the monitoring of late diagnosis and HIV testing in the United Kingdom (UK). Among other things, Chadborn recommended that the ECDC try to monitor the level of late diagnosis of HIV across the EU.
Another presentation from the UK gave an insight into the ‘real and perceived barriers’ to HIV testing in the black African community in that country. Ibidun Fakoya of the University College of London presented data that 3.8 percent of black Africans in the UK are HIV-positive, compared to 0.8 percent of the white population. One of her more surprising findings was that 76.4 percent of black African patients in the UK had visited their general practitioner in the year before diagnosis. She pointed out that some public health professionals may not be suggesting HIV tests to patients in high-risk groups for fear of being accused of prejudice, and floated the idea of encouraging HIV testing in community settings as a way of tackling this problem.
Missed opportunities to diagnose HIV-infected persons in healthcare settings cropped up in several talks, including that of Anders Sönnerborg of the Karolinska Institute in Sweden. Sönnerborg was one of two clinicians who presented at the meeting, the other being Nathan Clumeck from Belgium, who gave a thought-provoking analysis of the current treatment and care situation. Clumeck pointed out that many people have an outdated impression of HIV/AIDS, and that although the condition needs constant treatment, in many cases HIV-positive patients today can live another 40 years or longer. He also challenged the fact that in resource-limited countries patients are put on antiretroviral treatment at a very late stage of their infection. He concluded by calling for a campaign to spread greater awareness about HIV among the health providers at large, stressing that there are a few diseases, such as oral thrush, that could be indicators of reduced immunity and should trigger the attention of clinicians.
Nikos Dedes, chairman of the European Treatment Group, said that we have some insights into why people at risk may delay testing, such as fear of a positive test result, stigma and discrimination, ignorance of the fact that effective treatments, or not perceiving oneself to be at risk. What we do not know is the relative importance of these obstructing factors.
The WHO Regional Office for Europe’s Regional Adviser on HIV/AIDS and Sexually Transmitted Infections, Srdan Matic, pronounced himself certain that there is no simple solution or ‘silver bullet’ to tackling HIV. He gave his full backing to the creation of European guidance on HIV testing and counselling, but urged caution, pointing out that Europe can benefit from watching the effect of the new CDC recommendations in the US before committing itself to similar actions on a broad scale.
Some of the other issues that were addressed during the presentations and discussions included: new ways of targeting high-risk groups for testing; the need for financial support for any major scaling-up of HIV testing in Europe and the challenges that may face healthcare systems to provide appropriate care to the additional numbers of HIV-infected people who would be diagnosed; the cost-effectiveness of such measures; the political and ethical concerns surrounding the issue of testing, and how they will impact any policy; and the need to share experiences in HIV testing and counselling as well as examining the barriers.