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TitleLiving with HIV and dying with AIDS : diversity, inequality and human rights in the global pandemic
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LanguageEnglish
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Total Pages264
Table of Contents
                            Contents
Introduction and Acknowledgements
Chapter 1 Posing the Problems
Chapter 2 Mapping the Pandemic
Chapter 3 A Biographical Overview
Chapter 4 Depending on Health Care for Survival
Chapter 5 Challenging Livelihoods
Chapter 6 Changing Sexual Lives
Chapter 7 Shaping Reproductive Futures
Chapter 8 Human Rights: Paths to Cosmopolitanism
Chapter 9 Back to the Future
References
Index
                        
Document Text Contents
Page 1

Living with HIV and Dying
with AIDS

Lesley Doyal with Len Doyal

Diversity, Inequality and Human Rights
in the Global Pandemic

Page 2

Living with hiv and dying with aidS

Offering compelling evidence of the inadequacy of biomedical models for the
AIDS response, this book provides a clear and lucid look at the inequalities that
drive growing rates of HIV infection and the inadequacy of existing systems to
address them. Bringing to life the old adage the ‘personal is political’, it provides
valuable evidence of the social and economic realities faced by HIV-infected
people everywhere.

Sofia Gruskin, University of Southern California, USA

A powerful combination of qualitative empirical data, sensitive sociological
insights into diverse contexts of living and dying with HIV/AIDS, and a clear
explication of the relevance of human rights both within nations and globally.
Collaborative work between medical and social science researchers is the
suggested path to deeper understanding of the profound burden of social suffering
that extends beyond biomedical considerations.

Solomon Benatar, University of Cape Town, South Africa, and University of
Toronto, Canada

A wide-ranging analysis of what makes HIV such a potent agent of human
suffering, and why the remarkable biomedical progress of the past 30 years must
be matched by advances in human rights, equity and access for there to be real
progress. Here is a contextual backcloth against which clinicians can re-evaluate
treatment and care for HIV.

Jane Anderson, Homerton University Hospital NHS Foundation Trust, UK

No other source provides such an insightful, integrated, broadly-focused analysis
that uses an explicit conceptual framework to take context and differences into
account, systematically connecting human needs, human rights and inequality.
This brilliant, accessible book is essential reading for policy-makers, practitioners
and academics, whether or not they are interested in the specific case of HIV and
AIDs.

Pat Armstrong, York University, Toronto, Canada

Page 132

Chapter 7

Shaping Reproductive Futures

The last few years have seen a rapid growth in technologies to aid safe conception
for HIV positive people and to prevent the transmission of the virus from mother
to child. As a result many more women and men are now able to become parents
without damaging their own health or that of future offspring. However the full
potential of these technologies has so far been confined mainly to those living in
rich countries.

Despite the growing emphasis on reproductive rights, too many women still
lack basic access to fertility control and cannot be sure of giving birth safely
(Cottingham et al. 2012). In sub-Saharan Africa, for example, the numbers using
modern contraceptive methods is estimated to be as low as 23 per cent, while
adolescent pregnancies stand at 103 per 1,000 15–19-year-olds compared to only
17 per 1,000 in Europe (UNFPA 2010). This lack of provision affects all women
of childbearing age but creates additional problems for those who are HIV positive
(de Bruyn and Paxton 2005; Kendall 2009; Delvaux and Nostlinger 2007; Gruskin
et al. 2007, 2008; London et al. 2008). This chapter will explore what is known
about the ways in which positive status influences reproductive deliberations and
experiences of childbearing within the broader framework of global inequalities
in reproductive health care.

Reproduction: Paths to Pregnancy

Around 80 per cent of those living with HIV worldwide are at an age when
unprotected heterosexual activity can lead to pregnancy and where parenthood is
seen as the social norm. The introduction of antiretroviral therapy (ART) has left
many positive people feeling healthier, more hopeful and hence more desirous of
parenting (Loutfy et al. 2009).

These developments have been of particular significance to women, since it
is they who must undergo the demanding biological processes of pregnancy and
childbirth. New methods of assisted conception can limit the risk to a negative
partner. Similarly the transmission of the virus from mother to child can be minimised
through the administration of ART during pregnancy and the use of appropriate
obstetric methods. These technologies are now widely available in the global north
and the stigma surrounding positive parenting has somewhat diminished.1 As result

1 However a number of studies have shown that even in the US high-quality services
are still limited, with many marginalised groups missing out (Sauer 2006).

Page 133

Living with HIV and Dying with AIDS118

the total number of planned births among HIV positive women in North America
and in parts of Europe has gone up significantly (Kirshenbaum et al. 2004; Blair et
al. 2004; Heard et al. 2007; Sharma et al. 2007; Fiore et al. 2008).

However such developments have not occurred in the same way or at the same
pace in different parts of the world (Mantell et al. 2009). Research in South Africa
(Peltzer et al. 2009; Cooper et al. 2009) and Kenya (Baek and Rutenberg 2010)
has shown that HIV positive status is still a major deterrent to childbearing. This
reflects the fact that reproductive deliberations are affected not only by the lack of
health care but also by the heightened fear of infection, illness and death found in
the wider context of poverty and social deprivation (Nduna and Farlane 2009). In
a recent study in Soweto only around 30 per cent of positive women using highly
active antiretroviral therapy (HAART) wanted to become pregnant compared to 69
per cent of those who were negative (Kaida et al. 2010). Similarly, HIV negative
women interviewed in a Rwandan study were 16 times more likely to express a
desire for (more) children than their positive compatriots (Elul et al. 2009).

Under these circumstances the first priority for many positive women and
men will not be to promote conception but to prevent it. Yet this reality has so
far received very little attention. As a result many find themselves producing
unintended children in situations that may be hazardous to their own health and
that of their families (Leach-Lemens 2010; Myer et al. 2007).

It is estimated that in 2011 some 1.5 million HIV positive women became
pregnant in middle and low income countries (UNAIDS 2012a). However they will
have arrived at this point by very different routes. Among those who know they are
positive some will have made a conscious decision to attempt conception, while
others will not have. Many will have conceived intentionally or unintentionally
without knowing that they (or their partner) are HIV positive at all.2 Some of these
will discover their own status (and/or that of their partner) during the pregnancy,
while others will give birth without ever discovering that they are positive.

Once women become pregnant the narratives of their conception appear to be
of little interest either to clinicians or to researchers. As a result, many important
questions remain unexplored. What were the original reproductive desires
and intentions of individual women? Were they negotiated with a partner (or
others) and if so how? Did the women have access to appropriate and effective
contraception? Did they use it? Did they seek a termination and if so under what
conditions? A similar veil of ignorance lies over the experiences of those who go
on to negotiate the later stages of pregnancy and early motherhood. The extensive
biomedical literature on HIV and pregnancy focuses mainly on the reduction of
mother to child transmission, while the well-being of the women themselves has
received much less attention (Giles et al. 2009).

2 Around 40 per cent of all pregnancies worldwide are estimated to be unintended
(UNAIDS 2012a).

Page 263

Living with HIV and Dying with AIDS248

Novogrodsky, Noah 159
Nussbaum, Martha 12n13, 13–14n15,

156n34, 159n37
nutrition 14, 28, 187

O’Neill, Onora 157–8, 159, 160–61, 184

palliative care 11, 18, 55–6
parenthood 41, 53, 100, 117–18, 119–23,

126–31, 132–5, 136–8
breastfeeding v. formula feeding 133–5
fatherhood 89n16, 100, 120–21
motherhood 53, 117–18, 120, 121–3,

126–31, 132–5, 136–7
positive mothers and childrearing 137–67

PEPFAR (President’s Emergency Plan for
AIDS Relief, US, 2004) 143, 167,
168n5

Peru 44
Pillay, Navanethem 162
Pogge, Thomas 150, 162, 184–5
positive activism 54–5, 142, 177–8, 181
‘positive living’ and positive prevention

74, 75–7
poverty 17, 28, 45, 69–70, 79, 94–5, 140,

150, 170, 183–4
Powers, Madison and Faden Ruth 12n13,

13–14n15
prevention of mother to child transmission

(PMTCT) 25–6, 117, 122, 126–7,
135, 136, 141

prevention debates 2–3, 7, 97–8, 108–13,
114, 174–5

race and ethnicity 30, 31, 36, 44, 61
Rawls, John 148
religion and spirituality 51–2, 53
reproduction and fertility control

conception 109, 112, 117, 118, 119,
123–6, 138

contraception 117, 124–6
pregnancy 76, 117–18, 119, 120,

121–6, 127–8, 130–32
termination 128–30

reproductive rights 19, 117, 123, 143, 148
resource allocation 19, 141, 163–4, 165–9,

172, 173, 174–5, 188, 189
‘right to health’ 146, 151, 159, 176

Rugalema, Gabriel 95
Russia 169
Rwanda 118

Scotland 137
Sen Amartya 12n13, 148
Serbia 68, 72–4
SES (socio-economic status) 27–9, 31
sex workers 23, 24, 48–9, 61–2, 84, 86,

109–10, 143, 171–72, 177
sexual activities and sexual identities 97–116
social justice 142, 163, 166, 175, 186
social reproduction 88–94
social support 17–18, 48, 51–3, 54–5
socio-economic status see SES
Sontag, Susan 42
South Africa 7, 25, 26, 27, 34n23, 40,

56–7, 59, 60, 61, 70, 71n2, 82, 84,
85, 89n16, 92, 93n18, 106, 118,
120n4, 121–2, 123–4, 136, 157,
166–7, 171–2 184

South and Central American Region 23 see
also individual countries

South Sudan 168
Stemple, Laura 175
sterilisation 125
stigma 1, 6, 7, 15, 18, 33, 34, 42–55, 57,

60, 63n10, 64, 68, 80n3, 82, 90,
94, 96, 99, 101–2, 106, 109, 110,
17, 121, 124, 131, 141, 149, 171,
189, 141

shame 33, 47, 49
structural violence 17–18, 31
sub-Saharan African region 2, 17, 25–6,

27–8, 34, 35, 41, 66, 81–3, 84–5,
167, 168–9, 182, 183 see also
individual countries

survival strategies 25, 28, 49–50, 67, 86–8
Swaziland 25, 51

Tamir, Yael 153
Tanzania 52, 67, 71n21, 90, 106, 134–5
TASO (AIDS Support Organisation,

Uganda) 53, 54
TB (tuberculosis) 40–41, 82, 122, 167–8,

173, 181
Teixeira, Paolo 186

Page 264

Index 249

testing and treatment centres 62–4, 65,
70, 82–3, 85, 127–8, 133, 141,
174–5, 178

Thailand 52–53, 92, 93
therapeutic citizenship 19, 74–7
Togo 102, 113, 115
transgender people 32, 61, 98n3
Treatment Action Campaign (TAC) 55

64–5, 174–5

Universal Declaration of Human Rights,
1948 (UDHR) 139, 146, 148, 159

Uganda 52, 61–2, 67, 69, 95, 102–3, 178
Ukraine 10, 23
UK 22, 23, 35, 51, 71–2, 80, 100, 106,

111, 120
UN 143, 147, 160, 180
UN Millennium Strategy see Millennium

Development Strategy, UN
UNAIDS 1n1, 35, 126–7, 141, 168–9
USA 1, 5, 7, 22, 31, 32n19, 33, 35, 54, 61,

68, 71, 155, 184

Venezuela 125
Vietnam 53, 121, 127, 128, 129–30, 136, 177

voluntary counselling and testing (VCT)
82, 127–8, 141

Waldron, Jeremy 149, 152, 155
well-being 8, 9, 11, 12n13, 13–14, 39, 42,

51, 69, 75, 79, 81, 85, 95, 118, 126,
131, 137, 139, 148–9, 164, 166,
169, 174–5, 178, 180–3

Western and Central European region
21–23, 34, 62, 73–4, 117–18 see
also global north and individual
countries

Wolff, Jonathan 12n13, 139n2, 143,
159n37

World Bank 17, 144, 179–80
World Food Programme 187
World Health Organisation (WHO) 60n1,

169, 170, 180, 181
‘3 by 5’ initiative 2, 59

World Trade Organisation (WTO) 179, 185

Yamin, Alicia 188

Zambia 40, 69, 71, 75, 91
Zimbabwe 45, 63, 68, 76

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