AIDS Treatment and Human Rights in Context

211 Pages·2009·1.265 MB·English

by  Peris S. Jones (auth.)

AIDS Treatment and
Human Rights in Context
Also by Peris S. Jones:
Democratising Development: The Politics of Socio-Economic Rights in South Africa,
co-edited with K. Stokke, 2005
AIDS Treatment and
Human Rights in Context
Peris S. Jones
aids treatment and human rights in context
Copyright © Peris S. Jones, 2009.
Softcover reprint of the hardcover 1st edition 2009 978-0-230-60959-4
All rights reserved.
First published in 2009 by PALGRAVE MACMILLAN® in the United
States—a division of St. Martin’s Press LLC, 175 Fifth Avenue, New York, NY
10010.
Where this book is distributed in the UK, Europe, and the rest of the world, this
is by Palgrave Macmillan, a division of Macmillan Publishers Limited, registered
in England, company number 785998, of Houndmills, Basingstoke, Hampshire
RG21 6XS.
Palgrave Macmillan is the global academic imprint of the above companies and
has companies and representatives throughout the world.
Palgrave® and Macmillan® are registered trademarks in the United States, the
United Kingdom, Europe and other countries.
ISBN 978-1-349-37617-9 ISBN 978-0-230-62083-4 (eBook)
DOI 10.1057/9780230620834
Library of Congress Cataloging-in-Publication Data is available from the Library
of Congress.
A catalogue record of the book is available from the British Library.
Design by Scribe Inc.
First edition: May 2009.
Peris Jones, “A test of Governance”: Rights-based struggles and the politics of
HIV/AIDS policy in South Africa, Political Geography 2005; 24(4):419–47,
from which several pages are adapted in Chapter 1 and Chapter 2.
Table 2.1 is based upon Peris Jones, ‘‘On a never ending waiting list”: Towards
equitable access to antiretroviral treatment? Experiences from Zambia. Health
and Human Rights, special issue on HIV/AIDS, 8, 2, (December).
To Astrid, Anja, and Ellie, the brightest,
most dazzling of lights in my life
Contents
Foreword ix
Acknowledgments xi
List of Illustrations xv
Introduction 1
1 The Struggle to Access Treatment and Other Services in
South Africa 25
2 Conceptualizing Human Rights and “Access” to Medication 47
3 An “Unnatural Place”: Temba/Hammanskraal 73
4 “Gambling on Treatment”: Governing ARV Programs 95
5 Social Acceptability: Stigma, Social Attitudes, and the
ARV Information Gap 115
6 Cultural Beliefs and Business in an Era of ARVs 129
7 Accessing Treatment: Socioeconomic Issues and Clinic Criteria 145
Conclusion: Toward Treatment, Rights, and Accountability 159
Appendix 169
Notes 177
Bibliography 185
Index 193
Foreword
The N1 highway darts northwards from Pretoria, straight as an arrow through
flat open bushveld. The road is in pristine condition. It deceives. Occasionally
adorned by service stations replete with snack bars and verdant green lawns
complemented by equally lush fountains gushing water, the contrast awaiting
could not have been starker. Taking the Hammanskraal highway “off-ramp” for
the first time was a stark reminder of those many parts of South Africa shaped
by forced settlement and, where, amongst the brickmaking workshops and
roadside car exhausts sales, severe material challenges infuse daily life. But not
far from the local hospital, Jubilee, a corrugated tin shack daubed with the word
“Herbalist,” announces also other challenges to do with competing notions of
health and illness (see Fig. 0.1; Herbalist, Hammanskraal, and all other photos,
A. Murray). All this, out of sight, and I daresay, out of mind for most inhabit-
ants of the minority verdant green world paying their N1 highway toll. This is
how the study began: a morning coffee in such a service station, and by after-
noon, the first stack of a series of stories reflecting death, exclusion, confusion,
and competing beliefs—all in an era when AIDS medication was denied to
South Africans in the public health system. By 2005, with the era of antiretrovi-
ral treatment finally underway at Jubilee, all this was to change, wasn’t it?
Figure 0.1 Herbalist, Hammanskraal
Acknowledgments
The genesis of the book, as with most creative work, took place long before any
writing or conscious conceptualization ever did. While it has built on layers of
experience accumulated over the years, my work on AIDS only started in 2002.
And, rather self-conscious as I was about being another addition to this mas-
sive and congested field of enquiry and practice, four particular moments all
provided much needed solidity for my subsequent attempts to understand and
experience the epidemic.
In a seminar in Oslo in 2002, commenting on a UNDP presentation, upon
apologizing for my “newness” in working on AIDS, the UNDP staff member
in question responded along the lines of, “do not apologize, the sector needs
people with fresh thoughts, unencumbered by the prevailing wisdom.” This
had deep resonance for me, for which I thank the presenter, Lee-Nah Hsu.
Then, my particular “moment of truth” concerning AIDS in South Africa really
came thanks to the now sadly defunct Community Law and Rural Development
Centre (CLRDC) to whom a owe a great debt. Once upon a time, the CLRDC
had an impressive network of paralegal offices working in some of the poorest
and most rural parts of KwaZulu Natal. These offices, amongst other things,
provided legal support to communities and clawed back an impressive amount
of income from social grant entitlements and other untapped sources. In 2003,
the CLRDC was kind enough to host me for some months in Durban. The
latter visit included accompanying Irene Chetty and Sandile Sithole on one
of their field visits to several of the paralegal offices across the province. After-
wards, I was lucky enough to be hooked up in Hluhluwe with the CLRDC’s
Langa Mtshali. By then I thought I was beginning to acquire a little knowledge
about AIDS. But it was not until I accompanied one of the CLRDC’s paralegals
and a social worker making some home visits to people living with AIDS in a
location in Hluhluwe, however, that upon seeing the ravages of the disease in
the intimacy of family life and home settings, had I learnt anything by way of
comparison. In an era when the location was served only by a mobile clinic
and ARVs were still unavailable in the public sector, the experiences witnessed
behind closed doors, in such close proximity to the gentle beauty of the green
xii (cid:2)(cid:3) Acknowledgments
rolling hills of the Hluhluwe game reserve and the bus loads of affluent tourists
disembarking there, was both profoundly moving and disturbing.
It was also around this time, many years after I first knew of him in Gabo-
rone, Botswana, that I was therefore fortunate to be reacquainted with Mark
Heywood of the AIDS Law Project and Treatment Action Campaign. At the
height of the South African government’s efforts to block the roll out of antiret-
rovirals (ARVs), Mark very kindly agreed to fly to Oslo to do a presentation at
the Norwegian Centre for Human Rights. Meeting Mark then and since, and in
reading his written work, has all been immensely influential in seeking to envis-
age ways to bring much needed animation to otherwise sterile debates on health
and human rights. Indeed, Mark has provided the sharpest of intellectual knives
for both South African and global AIDS activists to cut through the denials and
barriers in access to ARVs. Mark’s consistent focus, dedication, and generosity
in giving people his time when the demands upon him are overwhelming have
all been deeply inspirational.
In 2004, the South Africa Programme at the Norwegian Centre for Human
Rights began collaboration with the Centre for the Study of AIDS (CSA), Uni-
versity of Pretoria, on the Hammanskraal-based Tswelopele project. It was very
fortuitous timing to be involved in the development of such an exciting project,
and one blessed by its very able project manger, Farhana Zuberi. I thank her
for our fruitful collaboration that laid some of the foundations for the book. In
2006 to mid-2007, the CSA very kindly hosted me as a visiting postdoctoral
fellow for a year and a half. I owe a massive debt of gratitude to CSA for being
the best of hosts, and above all, in providing such a stimulating work environ-
ment. Jimmy Pieterse gets a particular mention for all those lively discussions,
and also Johan Maritz, not least for both showing me another meaning of Aand-
Klas. Rakgadi Mohlahlane was another important source for many stimulating
moments of academic and social conversation. Two particular members of CSA
deserve special acknowledgement. Pierre Brouard provided endless quantities
of support for the project and a wicked sense of humor, particularly at a time
when the research was floundering. Pierre’s continuous dedication to his work
on AIDS remains another great source of inspiration. Solomon Shirinda, previ-
ously office manager at the CSA’s satellite office in Hammanskraal, also deserves
special mention. It was not only Solly’s fundamental role and patience in facili-
tating the fieldwork for which I am grateful to him and CSA. But in driving
around Hammanskraal, even on the hottest and most parched of days, the obvi-
ous enjoyment Solly brought to community-level work meant, nonetheless, it
was simply a pleasure to be with him.
Also at the University of Pretoria, at the Centre for Human Rights, I would
like to thank both Frans Viljoen and Danie Brand for many inspiring conversations