They also struggle to secure regular, continuous access to HIV/AIDS drug treatments even though, in theory, there is 100% access to state-funded delivery, and are suffering stress and anxiety as a result.
Sarah Bernays, of the London School of Hygiene & Tropical Medicine (LSHTM)’s Centre for Drugs and Health Behaviour, will be presenting initial findings from the three-year study at an international health briefing on HIV/AIDS 2008, which is being held at Tanaka Business School, Imperial College today.
The study has relevance regionally and globally because, as the world aims to scale up to universal access, it is likely that already overstretched health care systems will run into difficulties with supply security, leaving patients temporarily without appropriate treatment. There are reports that people living with HIV (PLHIV) have experienced interrupted treatment due to supply problems within the region, for example Russia and Turkey, and also in countries where the prevalence rates are much higher, for example Uganda and Burundi.
The LSHTM team carried out qualitative research between 2005 and 2007. A baseline study, conducted between 2005-6, and funded by the UK Department for International Development, involved in-depth interviews with 40 PLHIV in Serbia and Montenegro, and 18 service providers. A prospective study, which took place between 2006 and 2007 and which was funded by the European Social Research Council, followed up 20 PLHIV. East participant was interviewed a further three times, and written and/or audio diaries were collected.
The respondents reported high levels of stigma attached to HIV/AIDS, and perceived access to HIV treatment to be insecure. They felt that there were problems with the delivery of drugs, and that both drugs and monitoring tests were in short supply. They reported feeling anxious at these perceived failings. Serbia and Montenegro is a transitional state, and the underlying context of uncertainty - politically, economically and due to possible future conflict - is seen as a threat to accessing HIV treatment.
One respondent commented: 'It's very depressing you know to go there and to wait so many hours and every time is the same fear, will there be some medicines or not. I'm living with this fear'. Another spoke of being ostracised and abused by neighbours. One interviewee reported how his family had also suffered since his diagnosis; his father’s house, which had previously always been full of visitors, was now always empty, as people were afraid to visit.
Sarah Bernays comments: ‘People living with HIV/AIDS in Serbia and Montenegro perceive that access to continuous, appropriate treatment is insecure and that this, coupled with high levels of stigma, is having a negative impact on their quality of life. People are using up all their energy, both physical and mental, in trying to access treatment, which means they don’t have the time or the inclination to participate in HIV support services or engage in community mobilisation. In these circumstances, it is questionable whether HIV/AIDS can be described as a manageable chronic illness’.
The authors describe how there have actually been significant improvements, in the continuity of supply, particularly in Serbia, during the course of the study, but that the perception persists amongst PHLIV that access is insecure which means that trust has been damaged and people remain afraid.
The authors are calling for more robust contingency strategies to be put in place, so that countries can be better prepared in the event of treatment shortages. They suggest that regional procurement coalitions, which are South Eastern Europe context-specific, could be set up, and that NGOs working in the field of HIV/AIDS engage with treatment support, in order to work to build greater trust and understanding on HIV within communities, and try to make it easier for PLHIV to mobilise themselves more effectively. Finally, they recommend that efforts are made to identify forums in which the voices of PLHIV can be heard and listened to, such as websites and treatment support groups.
Lindsay Wright | alfa
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