What ethical issues arise in the scale-up of anti-retroviral therapy (ART) and other HIV-related treatment and care programmes? How can governments develop ethically sound programmes which are as fair, beneficial and sustainable as possible? This guidance document from the World Health Organisation and UNAIDS is written for government officials, programme managers, community-based and non-governmental organisations, people living with HIV, international organisations and donor agencies. It is intended to raise awareness of the ethical issues and to help with the planning and implementation of an equitable scale-up.
The number of patients who are in clinical need of ART greatly exceeds current resources and capacity in many developing countries. Even with increased efforts to scale up the care and treatment of people living with HIV, not everyone in need can gain access to ART immediately. This situation poses serious ethical issues, the most compelling of which will affect the lives and deaths of millions of people.
Fair process principles can make decisions more broadly acceptable and legitimate even when people disagree. There are a number of ethical issues associated with scaling up HIV care:
- Initially, ART programmes will reach only some of the people in need. However, action has to be taken urgently, rather than waiting for an ideal situation to arise
- Decision-makers should establish clear policies on whether specific population groups should be prioritised, to avoid the use of subjective or arbitrary criteria that may lead to discrimination
- Special care has to be taken to ensure and monitor access for the most vulnerable, poor and marginalised populations and for women
- Presumed adherence should not be a criterion for prioritising patients
- Special measures are necessary to ensure that the scale-up of HIV/AIDS programmes strengthen primary care and health systems as a whole
- Even modest charges at the point of service can be an obstacle to equitable access
- Financial uncertainty is inevitable when planning the scale-up of programmes, but the possibility that ART may become unavailable for some patients in the future is not a good reason for not starting them on it.
The following measures are recommended to promote equity in the distribution of HIV care in resource-limited settings:
- Mobilise without delay a wide range of partners to scale up HIV treatment and care
- Establish a broadly representative ethics advisory body (including people living with HIV) linked to the national AIDS programme or council to plan, promote and monitor equity in the scale-up and distribution of services
- Create opportunities for public dialogue on equitable access to HIV treatment and care, allowing a wide range of stakeholders to provide their views and expertise and be involved in making plans and setting priorities
- Develop policies for scaling up HIV treatment that are firmly based in human rights and ethical principles
- Identify vulnerable, marginalised, or other potentially underserved populations and consider the need for special policies and outreach to prioritise these groups and overcome barriers to care
- Define or adopt a set of measurable indicators and use monitoring and evaluation data to ensure equitable results at national and community level.
