AIDS 2014: Taking stock of achievements, honouring the dead and protecting the most vulnerable

14,000 people have arrived in Melbourne, Australia to attend the 20th International AIDS Society Conference. It takes place every two years and is the most prestigious gathering of the AIDS community, attracting leading AIDS researchers, activists, practitioners and policy-makers in the world. People living with HIV, community workers along with President Bill Clinton and Sir Bob Geldof are in attendance.

They have come here to take stock of what has been achieved to date and to discuss how to keep up the pace in the future. But they are also in mourning as a number of delegates on route to the conference sadly lost their lives in the MH17 plane crash in Ukraine. While this is an unimaginable tragedy for their families and friends, and a terrible blow to the AIDS movement; it is not the first time lives have been lost needlessly.

Since AIDS was discovered in 1981 around 36 million men, women and children have died. In 2012 alone 1.6 million died (nearly the population of Dublin and Cork put together), 210,000 of them children. And while many died at the early stages of the epidemic, when we didn't know enough about AIDS or did not have the drugs to treat it, the lives lost in recent years have happened at a time when we have the medicine at hand to treat the disease and the ‘know how’ to end AIDS.

Above: Women join in singing and dancing at the end of a short play performed by the Oxfam drama group to educate people about some of the high-risk behaviour that leads to HIV infection through traditional song, dance, poetry and plays. Photo: Annie Bungeroth/Oxfam

Yet there is progress to be proud of. According to UNAIDS (the joint United Nations Programme on HIV/AIDS), the number of deaths has been halved since 2005; the number of new infections has also declined by 33% since 2001. We have put 10 million people on treatment. Those who died on flight MH17 have contributed to that. But we still have a lot to do. Sub-Saharan Africa is bearing the brunt of the epidemic with 69% of HIV positive people living there. Entire countries such as Central African Republic, Democratic Republic of the Congo, South Sudan or population groups such as sex workers, men having sex with men and injecting drug users are being left behind with regard to HIV and AIDS services.

However, another less talked about vulnerable group are people with disabilities, estimated at 650 million or 10% of the developing world’s population. New research conducted by Oxfam Ireland, Trinity College Dublin and University College Dublin in Sub-Saharan Africa – where much of Oxfam Ireland’s work is concentrated including programmes that help people living with HIV and AIDS to get the services and support they need – found little evidence of effective HIV interventions for those with disabilities.

Where such practices existed – e.g. information made available in alternative forms to suit people with hearing, vision or intellectual impairment, or clinics adjusted to make them accessible to people with physical disability – they were of small scale and almost none were systematically evaluated. Less than half of national HIV strategic plans in East and Southern Africa recognised disability as an issue of concern, though a small number of countries – notably South Africa and Kenya – identified people with disabilities as a vulnerable group, and provided specific interventions for them.

We found a five-prong approach to be best practice. Participation (where people with disabilities are included as partners in HIV/AIDS initiatives from the outset and not just contacted for approval at the end of the process), peer led (members of the disability community lead on constructing and implementing HIV/AIDS programmes, e.g. by being trained as outreach workers for both general public and those with disabilities), integration (integrating disability friendly services into the mainstream delivery of programmes), sensitization (sensitising the disability population to information and issues around HIV/AIDS) and the creation of strategic partnerships by NGOs and service providers and government representatives with people with disabilities to pool funding and resources.

‘A country is as good as it treats its most vulnerable citizens,’ an Irish mother of a child with disability once told me. The AIDS community, in particular donors, researchers and practitioners, must continue on the path of achievements made so far to ensure people with disabilities who are living with HIV get the support and services they need. This means more research, evaluations, application of the five-prong approach and a 10% participation rate of people with disabilities in all HIV interventions. This might go some way in helping to protect one of the most vulnerable groups in our society and honouring those who have died so needlessly, including those who perished on flight MH17.

Dr. Enida Friel is Oxfam Ireland’s HIV Programme Coordinator