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By Daniel
Jordan Smith and Benjamin C. Mbakwem
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| Access
to antiretroviral (ARV) treatment: ARVS
enable people who are HIV positive to live
longer, healthier lives. Photo by WHO/Eric
Miller. |
Introduction
As access to antiretroviral (ARV) therapy increases
worldwide, attention has begun to turn to the effects
of treatment on prevention, and specifically the
sexual behaviour of recipients [1]. Much of this
work has been conducted in developed countries and
has focused on homosexual men [2-4]. Research in
developing countries has addressed the possible
connections between treatment and risky behaviour
utilizing mainly quantitative data from surveys
[5-8]. Few studies have considered the sexual behaviour
of people on ARV therapy from the point of view
of marital and reproductive goals [9], and little
ethnographic research has been undertaken on the
topic. This report focuses on preliminary ethnographic
research conducted in southeastern Nigeria, examining
particularly the intersection between antiretroviral
treatment and the life projects of marriage and
reproduction.
Therapy and Life Projects
The concept of life projects is introduced to emphasize
how people’s social aspirations and trajectories
influence their behaviour in ways that are not easily
predicted by or understood purely in terms of medical
priorities. In particular, as people realize that
HIV/AIDS is no longer a certain death sentence,
they strive to actualize their most important goals,
which in southeastern Nigeria – as in much
of the world – include marriage and parenthood.
Although ARV therapy enables people with HIV to
hope for and undertake these life projects, it also
continues to interfere with them, and achieving
these larger goals frequently impinges on people’s
capacity to stay on therapy, follow recommended
treatment regimes, and take adequate precautions
to protect others (and themselves) from further
infection.
For unmarried adults who learn they are HIV-positive,
the devastation of the diagnosis comes not only
from the fear that they will die young, but from
the realization that they may die without marrying
and having children. Until the advent of ARV therapy,
the cliché that HIV/AIDS was not only a physical
but also a social death sentence was the perceived
reality in Nigeria. Stigmatization was produced
not only by the disease itself, but by the fact
that a life cut short by AIDS was often a life without
reproduction. With the possibility of treatment
and a prolonged life, among the most important goals
that people receiving ARV therapy pursue are the
life projects of marriage and childbearing.
The Research
Here we report on findings that are the result of
several years of research by the authors in southeastern
Nigeria, funded largely by the U.S. National Institutes
of Health (grant #: R01 HD041724) as part of a larger
study, “Love, Marriage and HIV.” Since
2001, the Federal Medical Centre (FMC) in Owerri,
Imo State has served as the only facility in the
southeastern region offering ARV therapy. In 2006,
following a new national policy of free drugs and
plans for a massive scale-up, the FMC-Owerri began
expanding its government-supported program with
a target of 2,000 patients. By July 2006, more than
1,800 people were enrolled. Over several years,
we interviewed dozens of people receiving ARV therapy.
Chinyere’s Story and Life Project
The case of Chinyere (a pseudonym) is illustrative.
Early in 2003 she went to a private hospital very
sick. She was admitted at an institution notorious
for its unwillingness to treat HIV cases. After
a short stay at the hospital a nurse asked Chinyere
to follow her to the doctor’s office. Barely
able to walk, Chinyere dragged herself into the
doctor’s consulting room. As she sat down
he held up a piece of paper (her lab result) and
shouted: “Look at you! The sin of fornication
has finally caught up with you! Before I open my
eyes I want you out of this building. We don’t
treat people like you here.”
She eventually received treatment from another
doctor who willingly cares for HIV patients. Her
health improved and at that time she did not enrol
in the FMC-Owerri ARV program. For many months Chinyere
felt fine and she put her HIV status out of her
mind.
Later the same year, Obi (a pseudonym), a Nigerian
man based in Europe whom Chinyere’s family
wanted her to marry, came home for a visit, partly
with the idea of determining whether Chinyere was
the woman for him. In contemporary southeastern
Nigeria, young people increasingly choose potential
spouses independent of their families’ preferences,
often based on an ideal of romantic love. But the
role of families in suggesting possible spouses
and advocating for (or rejecting) particular unions
remains prominent. Men who have migrated overseas
are particularly likely to seek help in finding
a good girl from home to marry. Just before Obi
was to return to Europe, Chinyere fell sick and
was too ill to escort him to Lagos for his departure.
Enrolment on ARV Programme
After falling sick, Chinyere enrolled in the ARV
programme. She began to get well physically, but
she felt she had bigger problems – the possibility
that her HIV infection would derail her marriage
plans. During Obi’s visit things had gone
so well that they had initiated the first steps
in the traditional marriage ceremony and Chinyere
had moved in with her future mother-in-law. Soon
after Chinyere started on her ARV drugs, Obi arranged
to have the next steps of the traditional wedding
ceremony done in his absence. In the week leading
up to the traditional ceremony, Chinyere developed
rashes all over her body, a common reaction to Nevirapine,
one of the first-line drugs in the ARV combination
commonly provided in Nigeria’s ARV programme.
Survival Strategy
Chinyere was frantic about her appearance, worried
that someone might guess that she had HIV. She eventually
informed her mother-in-law that she had an allergic
reaction to an everyday medication and this was
the story conveyed to the larger traditional wedding
party. Chinyere made it through the traditional
wedding without her HIV status being discovered,
but she still faced the fact that Obi would soon
come home for the church wedding, and she had not
yet revealed her status to him.
The impending church wedding hastened her dilemma
because she and Obi were Catholics and HIV tests
were required of all couples wanting to marry in
the church. She settled on the idea that she would
go together with Obi for pretest counselling, pretend
it was her first test, and feign horror when her
result was revealed. She banked on the hope that
Obi would stick by her when her status was revealed
now that they were traditionally married, and that
she would avoid the worse consequences of his discovering
her longer-term deception.
Co-conspirator
On the appointed day, when she and Obi went for
their results, Chinyere fainted dramatically. Her
gamble paid off. Although Obi tested HIV-negative,
he did not react angrily about her result. Indeed,
once Chinyere’s status was known Obi became
a co-conspirator in figuring out how to get married
in the church. He could accept his wife’s
HIV status, but he could not live without the social
recognition of a church wedding and he personally
arranged to secure a fake lab result for his bride
to be. They married in the church and Chinyere eventually
became pregnant. With the aid of treatment her child
was born HIV-negative. She did not breastfeed the
baby boy and again had to invent an explanation
to cover her unusual behaviour.
Over time we lost contact with Chinyere, but at
last report her marriage remained amicable, her
child was healthy, and only she and Obi knew her
HIV status.
Marriage and Parenthood
In our research we found that the most valued part
of a life resurrected by ARV therapy is the chance
to marry (or remarry) and have children. While the
vast majority of people on ARV therapy at the FMC-Owerri
are mindful of the continued risks to themselves
and others, and committed to keeping themselves
and their loved ones safe, the physical risks to
personal and public health are factored into a larger
equation in which the very reasons for being alive
are always paramount. In southeastern Nigeria, marriage
and parenthood, the principal tasks of biological
and social reproduction, reign supreme in the hierarchy
of social expectations and individual aspirations.
For many people on ARV therapy, the dilemmas of
how to marry and make families while living with
HIV are resolved, or at least addressed, by seeking
partners from within the communities created through
treatment and the support groups that have been
established as a result. At the FMC-Owerri, a support
group has become a principal network for people
seeking sexual partners, possible spouses, and eventually
pregnancy and children. But not everyone who is
HIV-positive can or will find love or marriage within
the support groups.
The lives of people living with HIV remain naturally
intertwined with the wider population of people
who do not know their status. Life projects, especially
reproductive life projects, continue to pose ethical
predicaments, public health risks, and existential
dilemmas. Whether, when, and how to disclose one’s
HIV status; how to marry and have children in ways
that meet social expectations and achieve personal
ambitions; and simultaneously how to stay healthy
and on drugs – these are priority issues for
people living with HIV who have been provided another
chance at life by the availability of ARV drugs.
ARV Therapy and Stigma
While the availability of drugs has the potential
to eliminate the social and biological death sentences
previously associated with HIV/AIDS in Nigeria,
the scaling up of treatment has not yet significantly
reconfigured the landscape of stigma. As a result,
people on ARV therapy continue to try to manage
their treatment mostly in secret. In many cases
the resurrection of reproductive life projects can
prove to be an obstacle to adhering to therapy and
vice-versa. For people who rely on antiretroviral
medicines to live, the continuing stigma of the
disease means that the very drugs which have restored
their futures also threaten to undermine their most
precious life projects. The drugs themselves, so
valued for their physical effects, can be reminders
of the enduring difficulties and discrimination
associated with HIV/AIDS.
References
1. Wilson TE, Barron Y, Cohen M, Richardson J, Greenblatt,
R, Sacks H, et al. Adherence to antiretroviral therapy
and its association with sexual behavior in a national
sample of women with Human Immunodeficiency Virus.
Clinical Infectious Diseases 2002; 34(4):529-534.
2. Ostrow DE, Fox KJ, Chmiel JS, Silvestre A, Visscher
BR, Vanable PA, et al. Attitudes towards highly
active antiretroviral therapy are associated with
sexual risk taking among HIV-infected and uninfected
homosexual men. AIDS 2002; 16 (5):775-780.
3. Stephenson JM, Imrie J, Davis MMD, Mercer C,
Black S, Copas AJ, et al. Is use of antiretroviral
therapy among homosexual men associated with increased
risk of transmission of HIV infection? Sexually
Transmitted Infections 2003; 79(1):7-10.
4. Stolte IG, Dukers NHTM, Geskus RB, Coutinho
RA, de Wit JBR. Homosexual men change to risky sex
when perceiving less threat of HIV/AIDS since availability
of highly active antiretroviral therapy: a longitudinal
study. AIDS 2004; 18(2):303-309
5. Wilson TE and Minkoff H. Condom use consistency
associated with beliefs regarding HIV disease transmission
among women receiving HIV antiretroviral therapy.
Journal of Acquired Immune Deficiency Syndromes
2001; 27(3):289-291.
6. Moatti JP, Prudhomme J, Traore DC, Juillet-Amari
A, Akribi HAD, Msellati P. Access to antiretroviral
treatment and sexual behaviours of HIV-infected
patients aware of their serostatus in Cote d'Ivoire.
AIDS 2003; 17 (Supplement 3):69-77.
7. Wilson TE, Gore ME, Greenblatt R, Cohen M, Minkoff
H, Silver S, et al. Changes in sexual behavior among
HIV-infected women after initiation of HAART. American
Journal of Public Health 2004; 94(7):1141-1146.
8. Bateganya M, Colfax G, Shafer LA, Kityo C, Mugyenyi
P, Serwadda D, et al. Antiretroviral therapy and
sexual behavior: a comparative study between antiretroviral-naive
and -experienced patients at an urban HIV/AIDS care
and research center in Kampala, Uganda. AIDS
Patient Care STDs 2005; 19 (11):760-768.
9. Wilson, TE. Sexual and reproductive behavior
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& Gynecology 2001; 44(2):289-299.
* Daniel Jordan Smith is the Stanley
J. Bernstein Assistant Professor in the Social Sciences
and Assistant Professor of Anthropology at Brown
University in Providence, Rhode Island, USA.
Benjamin Mbakwem is the Programme Director of Community
and Youth Development Initiatives in Owerri, Imo
State, Nigeria.
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