Preventing mother-to-child transmission of HIV
in South Africa:
a case study of civil advocacy and policy change
Presented at the XV International AIDS Conference, Bangkok 2004
Abstract number: MoPeE4058
A summary of:
WOMEN’S ACCESS TO NEVIRAPINE TO PREVENT
MOTHER-TO-CHILD TRANSMISSION OF HIV:
A CASE STUDY OF POLICY DEVELOPMENT IN SOUTH AFRICA
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Melanie Elizabeth Campbell
Graduate Department of Pharmaceutical Sciences,
University of Toronto
With academic support from the University of Cape Town
Copyright by Melanie Elizabeth Campbell (2004)
1
ABSTRACT ______
Preventing mother-to-child transmission of HIV in South Africa: a case study of civil advocacy and policy change
Melanie Elizabeth Campbell, (2004)
Graduate Department of Pharmaceutical Sciences, University of Toronto
Issues:
South Africa (SA) is home to the greatest number of HIV+ people in the world. Studies suggest that the second leading mode of transmission, via mother-to-child, could be reduced by 50% through a prevention program using a two-dose Nevirapine regimen. The SA Government initially stalled full rollout of such a program, opting for an 18-site pilot program instead. In response, an advocacy group, the Treatment Action Campaign (TAC), successfully challenged and overturned the government’s policy in court.
Description:
This case study relied primarily on qualitative interviews with 21 policy stakeholders to understand the historical, political, social and cultural legacies and beliefs that shaped the Nevirapine policy process. In particular, it examines the role and activities of the TAC and physicians/researchers in challenging the government’s initial policy. It further explores the motivations behind this initial piecemeal policy.
Lessons learned:
Multiple factors influenced policy development including divisions within government, leadership styles, the imperialism of Western biomedicine, historically evolving government-civil society relationships, policy-related barriers, and activist pressure. While the TAC utilized both grassroots and “elite” modes of activism to openly challenge government, physician/researcher opposition was more subversive, including the creation of research projects to bypass formal policy and enable delivery of medicines to patients.
Recommendations:
Mounting a successful advocacy campaign for AIDS policy change requires a high level of sophistication – strategic political knowledge, as well as a detailed scientific understanding of the disease and its management are needed. To this end, the tactics and philosophy of the TAC can serve as a resource for other groups launching similar campaigns. Furthermore, the activities of physicians in this case suggest that medical curricula should include expanded training in social advocacy to better equip physicians for practice in today’s era of economic globalization.
TABLE OF CONTENTS ______
1. INTRODUCTION
1.1Introducing the Problem
1.1.1Statement of Research Problem
1.1.2A Brief Description of the Case
1.2 Introducing the Study
1.2.1Purpose
1.2.2Objectives
2. Methodology
2.1Epistemological Insights
2.1.1Case Study Research
2.1.2Ethnography
Reflexivity
2.2Research Plan
Figure A.The Research Timeline and Policy Development in South Africa
2.2.1Qualitative Interview with Policy Stakeholders
Figure B.Participant Summary Chart
3. RESULTS
3.1Understanding the Government’s Role in PMTCT Policy Development
3.1.1Theme 1: Historically evolving government-civil society relationships
3.1.2Theme 2: Leadership styles and the disposition of certain key governmental actors
3.1.3Theme 3: Divisions and ties within government
Loyalty and the ANC
Public Vs. Private Discourse
3.1.4Theme 4: Resources and other policy-related barriers
3.1.5Analysis
3.2Understanding the Response to Government
3.2.1The Treatment Action Campaign
Grassroots Mobilization
Elite Activism
3.2.2Physicians/Researchers
3.2.3Analysis
Beliefs, Relationships and Continued Pressure on Government
Ideologies, Activities and Outcomes: The Role of the Treatment Action Campaign and Insights from US-Based AIDS Activists
The Perspectives of Physicians: A Call for Activism?
3.3Lessons Learned
3.3.1Looking to the Future: A South African Perspective
References
1. INTRODUCTION
On March 9, 2000 Justice Edwin Cameron, Acting Justice of the Constitutional Court of South Africa, made the following statement during his address at the Gala Dinner of the Second National Conference for People Living with HIV/AIDS, held under the auspices of the International AIDS Conference in Durban, South Africa in 2000:
…the fourth, and final matter for concern about current government policy… concerns the provision of anti-retroviral medication to pregnant mothers and their infants. It is correct, as has been emphasized, that there are many questions in the AIDS epidemic that are still unanswered. There are many things that we do not know about the virus, about the human body, and about human society and human behaviour in it. Nevertheless, there are many things that we have in fact learnt about AIDS, and about ourselves in how we respond to AIDS. Since 1994, very detailed and careful scientific and medical studies have been done on how to reduce the risk that a mother with HIV will transmit it to her baby during or after birth. The overwhelming scientific consensus is that effective anti-retroviral medication can be made available in a developing country to reduce transmission. Every month in our country, approximately five thousand babies are born with HIV. Medicines exist that, now, can reduce this figure by half. Economists have done detailed studies that show that this medication can be made available cheaply and affordably. Their studies have also shown that, from a purely economic point of view, it is better to save young babies from getting HIV than to let them fall sick and die of AIDS, and that intervention will save the country money. In brutal terms, it is cheaper to have a healthy orphan than a sick, dying orphan. So overwhelming is the medical, scientific and economic consensus on these points, that many people find it almost impossible to understand why our government is still delaying the immediate implementation of programs to prevent mother to child transmission of HIV. (Cameron 2000)
The thesis that follows develops an analysis of why Justice Cameron’s argument, supported by physicians and activists throughout the country, was on its own, not enough to persuade the South African Government to implement a comprehensive, nation-wide program to prevent the transmission of HIV from mother to baby.
1.1Introducing the Problem
1.1.1Statement of Research Problem
Justice Cameron’s comments identify some of the brutal realities of AIDS in South Africa, and the related failure of government to develop a broad-access policy for the prevention of mother-to-child transmission of HIV (PMTCT). The following case study examines the development of PMTCT policy using the antiretroviral drug Nevirapine. The intent of this study is to understand the policy process that initially rejected and then eventually brought about a nation-wide Nevirapine-centered PMTCT program. This study further explores the role that local treatment advocates, namely the Treatment Action Campaign, and practicing physicians played in influencing the South African Government’s national policy.
1.1.2A Brief Description of the Case
HIV/AIDS has ravaged South Africa. Current estimates indicate that every year over 70, 000 children are born with HIV due to mother-to-child HIV transmission (MTCT) (Treatment Action Campaign 2001b). In response to this unsettling state of affairs compounded by a lack of access to treatment, in December 1998 the Treatment Action Campaign (TAC) was founded. The initial campaign of this treatment advocacy group put pressure the South African Government to implement a program whereby all HIV+ pregnant mothers could access drug interventions to prevent transmission to their babies (Treatment Action Campaign 2001a).
In January 2001, in the face of concentrated pressure, applied most vocally by the TAC, the Department of Health announced that they would begin an 18-site PMTCT pilot project (kaisernetwork.org 2001; Smith 2001). The Department’s program included the provision of the antiretroviral drug, Nevirapine, as well as milk formula[1](Smith 2001). As mentioned by Justice Cameron, two doses of the drug Nevirapine, one to the labouring mother and one to the baby after birth, reduce the rate of MTCT by 50%.
However, by restricting the pilot project to only 18 sites, access to this important drug by citizens with HIV varied widely. For example, doctors working in the public health care system, outside of the designated sites, were precluded from prescribing Nevirapine, even when medically indicated and where the necessary support services for administration of the drug were available. Yet, women with private insurance, who received care outside of the public system, could access Nevirapine with a prescription from their physician.
Health activists, led by the TAC, have taken issue with this strategy involving a limited-access program, as Nevirapine is considered a life-saving medication. Most South Africans cannot afford access to private health care (Treatment Action Campaign 2001b). Thus, the TAC and its partners claimed that the government’s policy discriminated against the poor, which in the South African context amounted to discrimination on grounds of race as well. The TAC also argued that the government was threatening their citizen’s constitutional rights to health (Treatment Action Campaign. 2001b). Eventually taking their claim to the courts in August 2001, the TAC used the liberal[2] South African constitution to argue their case (Treatment Action Campaign 2001b). After a series of decisions and appeals, in July 2002 the Constitutional Court of South Africa upheld the TAC’s position, and charged the South African National Government with the responsibility of expanding access to PMTCT using Nevirapine to all those in need of it.
1.2 Introducing the Study
1.2.1Purpose
In order to address the complexities of access to essential HIV/AIDS medicines in the developing world from a national, government policy perspective, this research involves the exploration of the politics of drug access in South Africa, focusing specifically on the prevention of mother-to-child transmission of HIV using Nevirapine. This focus is centered on the brief description of the events precipitating current government PMTCT policy, from January 2001-July 2002 (discussed above). However, these events are situated within PMTCT policy generally, as well as broader AIDS policy. Therefore, the research aims to explicate the policy process that has led to piecemeal, incremental drug access to Nevirapine for PMTCT, making reference to the underlying context of both PMTCT policy at-large, and the broader response to AIDS in South Africa. Furthermore, the research attempts to identify historical, political, social and cultural legacies and beliefs in South Africa that have influenced the current policy environment. Finally, I examine the ideologies, agendas, methods of advocacy and outcomes of the Treatment Action Campaign and other treatment proponents, as well as the perspective of health care providers, throughout this policy process. My analysis is informed by the relevant literature that predates my fieldwork, but is based primarily on information extracted from qualitative interviews with key informants (policy stakeholders) conducted in South Africa, and supplemented with data obtained through participant observation at XIV International AIDS Conference in Barcelona, and via my participation on an intellectual property and health internet listserv.
1.2.2Objectives
There are five objectives of this study: two primary objectives, two secondary objectives and a post-study objective regarding dissemination of the research.
Primary Objectives
- To describe the policy process that brought about the decision by the current South African Government to implement pilot programs to prevent MTCT using Nevirapine. This objective aims to describe the rationale behind the decision that specifically rejects more comprehensive access/universal accessibility.
- To explore the events subsequent to the implementation of pilot programs that have resulted in continued pressure on the government to implement a more comprehensive program.
Secondary Objectives
- To evaluate the ideologies, agendas, and activities of health activist groups, including the Treatment Action Campaign, and similar social movements, focusing on the strategies used and outcomes relevant to the Nevirapine-based PMTCT policy process.
- To understand the perspectives of health care providers from both inside and outside relevant activist groups, as they relate to the Nevirapine-based PMTCT policy process, and particularly as they relate to the actual delivery of care to patients.
Ongoing Objective
- To disseminate the research widely; including to all research participants and major policy stakeholders both within and outside of South Africa.
2. Methodology
The current research is based on a qualitative, case study approach. This section introduces the approaches that informed this study, namely ethnography, a methodology used in qualitative research.
Section 2.2 moves temporally through the research process, describing each of the five phases. Finally, Section 2.3 discusses ethical issues and limitations related to the current study.
2.1Epistemological Insights
Qualitative research is used to gain a “greater depth of understanding” about an issue or topic of interest, and involves a set of strategies unique from the measurement-focused approaches of quantitative studies (Berg 2001:2). Denzin and Lincoln, who have written widely on qualitative research, define it in the following way:
Qualitative research is multimethod in focus, involving an interpretive, naturalistic approach to subject matter. This means that qualitative researchers study things in their natural settings, attempting to make sense of or interpret phenomena in terms of the meanings people bring to them. Qualitative research involves the studied use and collection of a variety of empirical materials – case study, personal experience, introspective, life story, interview, observational, historical, interactional, and visual texts – that describe routine and problematic moments and meaning in individuals’ lives. (Denzin and Lincoln 1994:2)
Creswell, who writes about various approaches within qualitative research, summarizes it this way:
Writers agree that oneundertakes qualitative research in a natural setting where the researcher is an instrument of data collection who gathers words or pictures, analyzes them inductively[3], focuses on the meaning of participants, and describes a process that is expressive and persuasive in language. (Creswell 1998:14)
With this general understanding of qualitative inquiry, case study research and ethnography are discussed next.
2.1.1Case Study Research
The case study approach is chosen for a variety of reasons. In Creswell’s comparison of five qualitative traditions, he recommends that a case study approach[4] be used “to examine a ‘case,’ bounded in time or place” (Creswell 1998:40). The “case” itself can be “a program, an event, an activity, or individuals” (Creswell 1998:61). This is an appropriate approach then for the study of Nevirapine policy development in South Africa; a process that formally began in January 2001 (though it roots go back to a much earlier time), and came to a court-ordered end in July 2002[5]. A case study can have multiple sites, or take place at a single location (Creswell 1998:61). This case study is a “multi-site study” (Creswell 1998:61); because it looks at a national policy, it draws on the experiences and perspectives of stakeholders across the country, namely in Cape Town, Durban and Johannesburg and their surrounding areas, it is further informed by the views of interested parties from around the world.
“The Case” of Interest for this Study
It is pertinent to note here that the case in question is the Nevirapine-based PMTCT policy process in South Africa, that generally took place between January 2001 and July 2002, and NOT the court case launched against government by the TAC, described above. This study focuses on the negotiated policy process that took place, and how actors in this process made their interests known and how some of them got their agendas met. The court case is therefore a part of the broader case of interest studied here. From this point on, reference to the “case” implies the case of study, and not the court case (which will be herein referred to as the “court case”).
2.1.2Ethnography
Merriam describes an “ethnographic case study” as one methodological approach to case study research (Merriam 1988:23).
An ethnographic case study… is more than an intensive, holistic description and analysis of a social unit or phenomenon. It is a sociocultural analysis of the unit of study. Concern with the cultural context is what sets this type of study apart from other qualitative research. (Merriam 1988:23)
Given the focus of this research of the Nevirapine PMTCT policy process and its attempt to identify historical, political, social and cultural legacies and beliefs in South Africa that have influenced the current policy environment, this sociocultural form of analysis is appropriate.
Reflexivity
One other important aspect of most qualitative research, and of ethnography in particular, is “a reflective concern on the part of the researcher”, also called reflexivity (Berg 2001:139). “This reflexive characteristic implies the researcher understands that he or she is part of the social world(s) that he or she investigates” (Berg 2001:139). Reflexivity requires that the researcher be self-conscious, aware of his or her own influence in knowledge production. Stake explains the need for reflexivity in qualitative research by comparing it to quantitative approaches:
All research depends on interpretation, but with standard quantitative designs there is an effort to limit the role of personal interpretation for that period between the time the research design is set and the time that data are collected and analyzed statistically – sometimes thought of as a ‘value free’ period. Standard qualitative designs call for the persons most responsible for the interpretations to be in the field, making observations, exercising subjective judgment, analyzing and synthesizing, all the while realizing their own consciousness. (Stake 1995:41).
Reflexivity is an exercise that helps ensure that data, through analysis, is represented truthfully. “Recognizing good sources of data” and assessing the robustness of one’s interpretations requires “sensitivity and skepticism”; “this expertise comes largely through reflective practice” (Stake 1995:50). This reflexive practice includes an “internal dialogue that repeatedly examines what the researcher knows and how the researcher came to know this” (Berg 2001:139, author’s emphasis). Thus, as mentioned initially, the reflective process involves first being aware of one’s influence in the research and therefore in the knowledge created. Then, as Stake alludes to here, this thought process should then be extended to an internal evaluation of where data came from, how it was interpreted, and whether the interpretation is a true representation of the data.