Chapter 2
Ethical policies for treatment
The 3 by 5 initiative is an opportunity for countries not only to increase significantly access to antiretroviral therapy, but also to accelerate the drive to achieve Health for All. The principles of primary health care - health systems equity, greater community participation, and multisectoral approaches - are essential to the ethics of HIV treatment as well. Special attention must be paid to questions of fairness as programmes get under way, since more people need treatment than will receive it. Yet the risk that programmes will not be perfectly fair should not delay action. Making them transparent, accountable, and inclusive of all affected communities and stakeholders, and demonstrably taking account of people's views, not only makes it more likely that these programmes will be ethically defensible and sustainable in the long term but should help countries reach other important health goals as well.
A key challenge facing policy-makers is to decide whether there are any morally significant differences among people that would make it right to draw distinctions among them as recipients of treatment. For example, should a consciously "pro-poor" approach be followed on the basis that health systems often bypass their needs?
Among the issues to consider are the following:
- To what extent should considerations of fairness constrain the usual objective of public health intervention, namely maximizing the benefits produced? The most efficient way to scale up treatment programmes may be to start with people already on waiting lists, or those already in the health system. If such lists now exist predominantly at elite hospitals with specialized clinics, then poor, rural, and otherwise marginalized or affected groups would be underrepresented. On the other hand, waiting until outreach programmes are able to serve such groups will result in a much smaller number of lives being saved in the first few years.
- Should benefit be measured solely in terms of health effects? Some people have urged that antiretroviral therapy should be provided as a matter of priority to health workers on the assumption that if physicians and nurses are not saved, the health system will deteriorate further or collapse. Should the same apply to teachers, civil servants, police officers, soldiers, employees generally, family members, caregivers or others?
- "Vertical" approaches to providing health care - such as setting up specialized HIV/AIDS clinics - may maximize the number of people treated in the short term, but are unlikely to be sustainable in many settings over the longer term, and could draw resources away from primary health care and the public system in general. This would disadvantage other groups of patients, especially the poorest and most vulnerable who are most dependent on such care. Likewise, the decision to start with existing waiting lists, which are predominantly at urban hospitals, may or may not affect the development of programmes for hard-to-reach groups.
- Should people receiving antiretroviral therapy have to pay for it? The argument for making treatment free to users is often framed in medical and public health terms (charges will deter people from adhering to or continuing treatment, which could lead to drug resistance). An argument can also be made that a system in which fees are assessed based upon "ability to pay" is not only administratively burdensome but becomes a barrier that discourages poor people from getting care and undermines the ethical premise of solidarity that lies at the heart of Health for All.
- For many countries, it is not clear how the long-term commitment to provide antiretroviral drugs will be sustained without support from donors. Such support is not guaranteed. Is the possibility that the drugs might be unavailable in the future a reason for not starting treatment, or would the failure to provide treatment for as long as possible be the greater wrong?
WHO and UNAIDS have taken the lead in developing guidance on these and other ethical aspects of policy through consultation with countries, implementers, advocates for the underserved, people living with HIV/AIDS and ethicists. Although WHO recognizes that Member States have legally binding obligations under the right to health, WHO's guidance will be framed as non-binding, policy-oriented, ethical principles. The guidance shows how a commitment to the principles of ethics, human rights, primary health care, and fair processes can assist in the resolution of the difficult choices that countries face.
Making 3 by 5 work for the poor and marginalized
The AIDS treatment gap mirrors widening polarization in health and well-being between the world's haves and have-nots. The treatment initiative is an opportunity for the global community to unite in a bold effort to tackle health disparities through concrete, goal-driven action. Yet national authorities and implementers will face difficult political and ethical choices as they work to expand treatment.
Deep social and economic inequalities and disparities in access to health services characterize many areas in which 3 by 5 must work. HIV/AIDS treatment programmes alone cannot overcome these inequalities. However, programme planners and implementers, working with communities, can take steps to reduce the impact of existing inequalities on access, for example, by making it easier for women and children to receive treatment (see Box 2.6). Ensuring a fair chance for the poorest people in society, as well as for socially marginalized and stigmatized groups such as commercial sex workers and injecting drug users, will demand focused planning and ongoing vigilance in the design, financing and implementation of treatment programmes. The active involvement of groups representing poor and marginalized communities is crucial, as experience in the city of Rio de Janeiro, for example, has shown (see Box 2.7).
There are no simple answers to many of the ethical questions raised in connection with HIV treatment. WHO and UNAIDS have launched a consultative process on equitable access to HIV/AIDS treatment and care, involving many stakeholders. This will produce guidance for countries, treatment providers and communities. WHO and UNAIDS cannot impose uniform prescriptions, but can identify the relevant questions and procedural options.
The choices countries make on assigning priority for treatment may differ while respecting procedural fairness. Fundamental procedural requirements are that a clear, rule-governed mechanism be in place to determine priority in access and that this mechanism be designed and monitored through an inclusive, participatory process in which all stakeholder groups take part. Relevant stakeholders include people living with HIV/AIDS, health care workers, governments, medical associations, drug regulatory authorities, the private sector, donors, academic institutions and nongovernmental community-based and faith-based organizations. Involvement of communities is indispensable.
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