A year ago, the World Health Organization (WHO) issued revised and consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection with a key recommendation to initiate HIV treatment earlier (at 500 CD4 cells/mm³ or less) in order to ensure that people with HIV live longer, healthier lives, and to substantially reduce the risk of HIV transmission. If implemented globally, earlier HIV treatment could avert an additional three million deaths and prevent 3.5 million new HIV infections by 2025.

Getting people on to treatment earlier is now a moral and scientific necessity. However we know that many communities around the world are already facing tremendous challenges getting access to HIV services. Therefore reaching a greater number of people who will need treatment even earlier is going to be complex and will require wholehearted buy in and engagement from affected populations. Communities are at the heart of an effective HIV prevention response. They need to be equal partners in planning, implementing and evaluating HIV prevention strategies and programmes. And they will need to continue to lead the HIV response and advocate for high standards of prevention, treatment and care for all if we are to bring about an end to the epidemic.

The guidelines themselves mention that greater and meaningful involvement of people living with HIV, the so called GIPA principle, needs to be at the heart of any changes and decisions related to how HIV treatment is provided. For the 2013 WHO guidelines to really transform the lives of people affected by and living with HIV, together with their families and caregivers, communities need to take responsibility for making them a reality in their context wherever possible, but at the same time, they need to be empowered to do so.

With this in mind, the International HIV/AIDS Alliance together with Stop AIDS Now and the Global Network of People Living with HIV (GNP+) have put together a guide to support communities and people living with HIV in the critical role that they play in helping to deliver more effective and equitable HIV programmes.

As well as focusing on some of the practicalities involved in initiating earlier ART treatment – whether for adults and adolescents living with HIV, or for pregnant and breastfeeding women – our joint guide also highlights the importance of community action when working towards a goal of universal access. Affected communities are well placed to expose service delivery failings for example, or to advocate for the necessary changes to national and local HIV laws and policies that might currently be impeding the HIV response, for example policies which prevent community health workers from dispensing HIV drugs or laws that criminalise lesbian and gay communities making it difficult for those groups to access treatment and other health services.

Indeed many ethical concerns are highlighted by the WHO guidelines. For example, the recommendation to offer lifelong treatment to pregnant mothers, children and people living with HIV in sero-discordant relationships require ethical consideration of the need to ensure that testing is voluntary rather than coercive as well as whether not some populations with HIV should be prioritised over others. Such issues require consensus at national and local levels. Communities therefore need to be involved in decisions about how to adapt the WHO guidelines to a local setting and in ensuring that the new recommendations are implemented within a rights-based approach with quality services tailored to different communities based on their needs.

Download the full set of modules that make up Driving the HIV response: A community guide to the WHO 2013 consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection.

The author, Dr Gitau Mburu, is senior advisor on HIV and health systems at the International HIV/AIDS Alliance.  A version of this blog was first published by BMJ blogs.