In the advocacy debate, infrastructure is an elastic term with many connotations: for instance, lack of infrastructure has been used as a rhetorical device to justify political inaction to respond to the enormous challenges of the HIV pandemic. Generally speaking, the concept has largely been understood in terms of a "gold standard" comprising a set of medical goods and services seen as the essential prerequisites for the effective delivery of ARVs in the clinical setting.

In order to find out what the experiences are regarding access to ART of people currently using antiretroviral medicines, the International Council of AIDS Service Organizations (ICASO) conducted a research, focusing on enablers and barriers to access ARVs.¹ Data were obtained from in-depth interviews with PLWHAs primarily in low-income countries. The methodology was developed through consultations at AIDS conferences in 2001. The interviews were conducted between February and May 2002.

In 11 countries in three regions (Africa, Asia/Pacific, and Latin America/Caribbean), sixteen PLWHAs were interviewed by in-country interviewers. Although the goal was to interview participants from developing countries, an Aboriginal man from Australia was also included in the study to explore issues of discrimination and treatment access that may be experienced by marginalised communities in developed countries. Twelve of the participants self-identified as female. Participants ranged from 24 to 47 years old. Approximately half of the participants were involved in community-based advocacy, whereas the other half has had little experience with organised HIV/AIDS activities.

Different understandings

The research points out that for some of the participants, their understanding of the concept of infrastructure included progressive policies, formal drug delivery systems, full diagnostic and monitoring equipment and well-trained health professionals. For others, the infrastructure required consisted of nothing more than a creative "suitcase system" bringing left over ARVs from countries in the North:

Cynthia from Trinidad and Tobago has access to ARVs through a precarious medium. Her access requires that she either makes trips to a country in the North every six months, or has her monthly medication sent by family members living in that country. She has received her medication on an ad hoc basis, resulting in a failure to strictly adhere to the drug regimen.

Others identified supportive family members and friends as a component of infrastructure:

Sma from Swaziland reports that her children provide the greatest support for her adherence to her medications. "Everyday after breakfast the youngest shouts, ‘Emaphilisi mama!' (‘Pills mommy!') and the older children bring me water and the tablets."

But family members can also play influential roles in blocking access to care:

When Ntokozo from South Africa was visiting the local clinic, her counsellor advised her to think about treatment. Ntokozo started on the ARV programme. Ironically, Ntokozo's brothers "asked (her) to stop seeing the doctor at the local clinic and to stop taking ARV drugs" – an example of how complex coping with a family members' HIV-positive status can be. Even the family doctor supported their decision.

Towards a new definition?

Thus, our research highlighted the need for a broader understanding of infrastructure and suggested that we include more elements than just clinical factors. Our findings suggest that a definition of infrastructure be explored that includes individual, family and community resources that have been largely ignored in the debate over ARVs and infrastructure. We conceptualise infrastructure not as a "gold standard' which may or may not be in place, but rather as a broad ranging set of systems, people, commodities and policies which may be more or less present along a continuum. From this perspective, at least some elements of infrastructure will always be in place.

Three-legged stool

This study did not aim to exhaustively analyse all the barriers that hinder access to ARVs. Rather, the sample size is illustrative and can reveal new ways of thinking about old problems. As opposed to examining barriers to access, this study sought to explore the experiences of people living with HIV/AIDS who have accessed ARVs. The data support the development of a definition of infrastructure that includes everything that it takes to get HIV care, treatment and support to the people who need it.

The framework we propose may be thought of as a three-legged stool that sits on a base (see Figure). The seat of the stool represents all of the HIV services that people may need, and the three legs and base are the infrastructure that supports these services. The three legs represent: a) human resources; b) commodities/supplies; and c) systems/facilities. The base represents the legal framework (policies and laws).

Recommendations

Based on the findings of the research, the recommendations are as follows:

1.An expanded definition of infrastructure needs to be widely communicated and used as a tool for community-based advocacy to expand the availability of care, treatment and support services to people living with HIV/AIDS.

2.Advocacy at all levels must include calls for improving the coordination and collaboration of existing health care services, increasing support to community education and other outreach activities, and involving people living with HIV/AIDS more meaningfully in the provision of care and treatment services.

3.Global and local efforts need to be reinforced to advocate for decreased prices of treatments (ARVs and other medications), commodities and supplies.

4.Increased efforts should be made to create and disseminate information about ARV treatment that is culturally appropriate; and ensures that participants have opportunities to make informed decisions about ARV treatment, and their involvement in clinical trials, including access to medicines post-trial.

5.Laws at national levels need to be reviewed and reformed to ensure that they are consistent with international human-rights obligations. It is important to compel national governments to implement human-rights protections at both national and local levels.

Regarding the first point, the advocacy challenge is to identify which elements of infrastructure, if enhanced, could best improve access to care, treatment and support in particular settings. Treatment advocates, NGOs and CBOs, and civil society in general, can and should highlight in their petitions and actions to their governments the elements of infrastructure that are in place in a particular setting and that could enhance access to care, treatment and support. For example, a strong PLWHA movement, a high-quality hospital network, dedicated doctors and nurses and a good legal framework.

We can also use the infrastructure discourse spelled out in the Declaration of Commitment as a result of the United Nations General Assembly Special Session (UNGASS) on HIV/AIDS. The Declaration recognises that all the elements of the "stool" that ICASO is proposing to illustrate the expanded concept of infrastructure are important, and that these are needed to effectively respond to the epidemic.

Scaling up access to treatment requires more than drugs at an affordable price. As discussed in the report, it demands political commitment and leadership; effective management of available resources; successful prevention, care, support and treatment strategies; information and education/training initiatives; collaborating with communities, civil society, people living with HIV/AIDS and other vulnerable groups and the active promotion and protection of human rights.