Community engagement for anti-retroviral treatment

Chama Musoka talks to peer educators, Zambia. © 2004 Gideon Mendel for International HIV/AIDS Alliance

What is Community Engagement for anti-retroviral treatment?

Anti-retroviral treatment is becoming more widely accessible. It is now accepted that people with HIV, their families and communities have an important role to play alongside health workers in ensuring access to effective and sustained treatment. This means that they should be involved not only in preparing for ARV treatment but also in supporting the life-time commitment that this involves.

The comprehensive term 'community engagement' is now being used to emphasise the long-term and multi-disciplinary nature of support for anti-retroviral treatment. The experience of the Alliance and its partners demonstrates that the maximum benefit and support for treatment depends on preparing people with HIV and health systems for the scaling up of treatment, and on the engagement of communities. It is essential to note that ARV treatment is only one type of treatment for HIV-related health problems, and treatment itself is only one component of the whole continuum of care, treatment, support and prevention. All these components are strongly linked and must be extended and strengthened as scale-up proceeds.

'Community engagement' must always have a multi-disciplinary approach, even when an epidemic is confined to certain populations or marginalised groups. This ensures comprehensive support for treatment, care and prevention, and contributes to reducing the stigma and discrimination that seriously obstruct people’s access to treatment and care, and contribute to failures in prevention.

Practical approaches to community engagement are evolving; they build on and engage with existing care, support, prevention, community mobilisation and poverty reduction efforts. Many people and organisation are already making valuable contributions through their work on treatment literacy, involvement of people with HIV and communities, positive prevention and community mobilisation for treatment, but there is much more still to be achieved. The Alliance’s current working definition of community engagement is as follows.

'Community engagement for anti-retroviral treatment' includes the following key programmatic elements:

  • supporting and investing in meaningful and influential involvement of people with HIV and their communities in addressing needs for ARV and other HIV-related treatments
  • specific involvement of people with HIV and their communities in planning, implementation, monitoring and evaluation of treatment services, whether in public, non-governmental organisation or private settings
  • support for community awareness-raising and mobilisation so that people who need treatment can successfully access, afford and use it as a life-time intervention
  • increasing treatment literacy for people on treatment and within communities; this includes accurate and accessible information about medicines, treatment and managing side-effects, how treatment fits in with daily life, prevention, how people on treatment can get what they need from health systems and other forms of material and psychosocial support
  • support for individuals in starting and remaining on treatment, including life-time adherence to treatment, positive living, prevention, psychological support, meeting economic and social needs, and referral to providers of care, support and prevention
  • community-focused delivery of clinical care, medication and treatment support, based on strong partnerships and linkages between health services and community organisations
  • advocacy and support for protecting, promoting and fulfilling people’s rights of access to ARV and other HIV-related treatment.