COMMENTARIES
Women in Rwanda
Another World Is Possible
Mardge H. Cohen, MD
Anne-Christine d'Adesky, MS
Kathryn Anastos, MD
Knowing that when we are sick with AIDS, we have no shelter on our
head and no school fees for our children, that is what kills us.
Laurence Mukamurangwa,
Rwandan Women's Network,
June 7, 2005
IN 2003, RWANDAN WOMEN'S ASSOCIATIONS ISSUED AN
international call to aid women who had been raped and
infected with human immunodeficiency virus (HIV) during
the genocide, and who were becoming sick and dying.
As difficult as it was for the world to comprehend the
tragedy of the 1994 events, it was even more incomprehensible
that while women with HIV were not receiving antiretroviral
medications, alleged perpetrators were receiving
treatment in prison.
1
The associations, often led by survivors themselves, care
for thousands of widows, rape survivors, and orphans, some
specifically caring for those infected with HIV. The leaders
of these associations knew their members needed antiretroviral
therapy immediately to survive. However, they also
understood the physical, emotional, familial, and economic
struggles caused by the civil war and genocide that
continued to traumatize these women and knew that successful
management of HIV infection would require more
than medications. Rwandan women with HIV infection
needed counselors and therapy for posttraumatic stress, support
groups, food, housing, education about their illness and
treatment, and job training as well as income for their children's
food, school fees, uniforms, and pencils.
The intersecting epidemics of gender-based violence, HIV
infection, and poverty can be found on every continent.
2 The
majority of women affected by these problems live in southern
Africa, where they comprise more than 60% of the 25.4
million adults with HIV infection.
3 Rwanda represents a particularly
poignant example of this synthesis of problems. In
1994, while the United Nations, the United States, and other
powerful countries did not intervene, Rwandan soldiers and
Hutu gangs systematically slaughtered 800 000 Tutsis and
moderate Hutus in 100 days.
4 It is estimated that 250 000
women were raped.
5 Gender-based violence resulted in the
synchronized HIV infection of tens of thousands of women
causing the current predictable AIDS epidemic in thousands
of Rwandan women.
6
Sexual violence during war is more than a soldier's callousness
against an individual woman. In Rwanda, the Hutu
extremists fostered their political goals through mass sexual
violence. They sexually assaulted young girls and women
because of their gender in a systematic attempt to exterminate
the Tutsis and their supporters, and they used the
weapon of HIV. According to one source, "Eyewitnesses recounted
later that marauders carrying the virus described
their intentions to their victims: they were going to rape and
infect them as an ultimate punishment that would guarantee
long-suffering and tormented deaths."
6
International legal and humanitarian constructs now define
gender-based violence during conflict as a way to demoralize
communities, as an instrument of genocide, and
as a crime against humanity when it is systematically directed
against targeted civilian populations.
6-8 These intentional
acts violate human rights principles, including the right
to life, equality, protection under law, and freedom from torture.
In 1998, for the first time, an international tribunal convicted
a Hutu rapist of a crime against humanity for his actions.
9
Although gender-based violence during war is now
condemned, the underlying attitudes and behaviors fostering
this violence stem from long-standing gender inequality,
which is also present during peace time. The United
Nations Development Fund for Women estimated that 1
in 3 women will sustain gender violence through rape,
coercion, and physical or emotional abuse during their
lifetime.
10
Justice has not come easily, quickly, or at all for many
Rwandan women who were raped, mutilated, and/or watched
their family members die.
11 Many women experience severe
emotional crisis, anger, and humiliation as they share
their testimonies. Most are still grieving; they find testifying
overwhelming and isolate themselves from the judicial
process and their communities. Few perpetrators have been
Author Affiliations:
Ruth M. Rothstein CORE Center for the Prevention, Care, and
Research of Infectious Diseases, Cook County Bureau of Health Services and Departments
of Medicine, Stroger (formerly Cook County) Hospital and Rush Medical
College, Chicago, Ill (Dr Cohen); Epidemiology and Population Health, Albert
Einstein College of Medicine, Bronx, NY (Dr Anastos); Women's Equity in Access
to Care and Treatment HIV Initiative (WE-ACTx), San Francisco, Calif (Drs Cohen
and Anastos, and Ms d'Adesky).
Corresponding Author:
Mardge H. Cohen, MD, Ruth M. Rothstein CORE Center
for the Prevention, Care, and Research of Infectious Diseases, 2020 W Harrison,
Chicago, IL 60612 (mcohen@corecenter.org).
©2005 American Medical Association. All rights reserved.
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prosecuted and long delays often prevent trials from starting.
12
Physical and psychological illnesses continue to plague
these women, including sexually transmitted diseases in addition
to HIV and AIDS, as well as fistulas, scars, chronic
pain, depression, posttraumatic stress, and flashbacks.
13,14
As a matter of justice, treatment for the wide array of health
problems must be provided.
The human rights abuses encompassed in gender-based
violence and its sequelae of HIV infection and other illnesses
are impossible to separate from the extreme poverty
imposed on women in Rwanda. Living on less than US $0.70
a day, most women are hungry and have insecure housing.
13
If widowed, they are often without any family income.
If sick, they are unable to work. Multiple family members
frequently are infected with HIV, causing households
to become poorer and poorer with no way to reverse the trend
in future generations.
15 Sexual, reproductive, and health rights
are inseparable from economic rights for women in Rwanda.
Women and young girls are infected at an earlier age than
men and boys because of their profound vulnerability to gender-
based violence and poverty.
16 However, other significant
factors also perpetuate this violence and HIV transmission
in Rwanda and worldwide. Young age, low literacy,
subordinate status, lack of empowerment, geography, ethnicity,
and race form the foundations for violence and the
HIV epidemic.
9 These demographic and social factors are
critical for understanding the spread of HIV and to defining
effective interventions.
17 The historical and economic
realities allow "racism, sexism, political violence, poverty
and other social inequalities . . . [to] sculpt the distribution
and outcome of HIV/AIDS" and the denial of human
rights.
18 These inequalities influence the disease pathogenesis
and course by determining who is vulnerable to infection,
who gets sick, who has access to counseling and testing,
who receives timely HIV diagnosis and antiretroviral
treatment, and who will be stigmatized and further marginalized.
Such structural factors and inequalities also distinguish
countries that will provide access to treatment from
those that will see their population decimated by HIV and
AIDS. Only by addressing these underlying structural inequities
will a practical model of comprehensive primary
health care and HIV care be defined and the public health
advocacy agenda for HIV-related policy be informed.
In 2004, Women's Equity in Access to Care and Treatment
(WE-ACTx), a group of US-based activists, physicians,
and scientists, joined with 4 Rwandan women's associations
serving widows from the genocide, orphans, and
women with HIV, to launch a grassroots HIV treatment program.
Through a public-private partnership within the Rwandan
Ministry of Health, WE-ACTx developed a clinic in Kigali
to address the desires and needs of women infected with
HIV that it serves. The women's associations refer their members
to this clinic. Women have easy access to their trauma
counselors and nurses, whose support is needed when the
women remember how they became infected and relive the
rapes and abuses they experienced. The women also receive
antiretroviral treatments, food, school fees for their
children, and HIV testing and treatment for their children.
Some women are also given community health worker jobs
so they can help other women and orphans with HIV.
The clinic provides food, transportation, and medical care,
free of charge. In partnership with the public health system
and women's associations and using medications from
the Global Fund to Fight AIDS, Tuberculosis, and Malaria,
the program has in the past 10 months evaluated more than
1500 women and initiated antiretroviral treatment to 550
women. These women are now getting stronger and are requesting
more and different services. The program will soon
provide comprehensive family-centered care, including voluntary
counseling and testing and treatment for women and
children within 2 additional associations.
Women infected with HIV also asked the WE-ACTx program
to study the effectiveness and toxicity of antiretrovirals,
as well as the influence of malnutrition and multiple
types of trauma on their disease progression. The program
recently was awarded funding by the US National Institutes
of Health and the National Cancer Institute to establish
a cohort study (The Rwandan Women's HIV Cohort
[RWISA]) designed to explore these questions and modeled
after the US Women's Interagency HIV Study.
19
Thirteen associations representing and advocating for
women, youth, and individuals infected with HIV are now
partnered with WE-ACTx--Society of Women with AIDS
in Africa, Urunana, Uyisenga n'Imanzi, Association de Veuves
et Vulernables Affectes et Infectes de SIDA Solidarity,
Igihozo, Hope After Rape, Inkuge, Icyuzuzo, Association National
pour le Soutien des Personnes vivant avec le VIH/
SIDA
, Avega, Ibereho, and the Rwandan Women's Network--
and will in time assume full responsibility for the
clinical partnership with the government. Rwandan women
with HIV have thus demonstrated that they are ready and
capable of adhering to treatment for HIV infection, and their
leadership will be a critical force in taking the treatment battle
forward. The Rwandan women and their associations have
identified their needs and a care system has been developed
that mitigates and challenges the social inequities
brought by gender-based and structural violence.
This work in Rwanda has demonstrated that providing
HIV care to survivors of genocidal rape requires integrating
medical care with psychosocial support and addressing
barriers to care for these women, including poverty. This
grassroots empowerment model can serve women and
children experiencing mass rape and sexual violence in
other conflict zones, including the Darfur region of Sudan,
northern Uganda, the Democratic Republic of Congo, and
Burundi.
20
Unfortunately, the recent United Nations report "AIDS
in Africa: Three Scenarios to 2025" challenges none of the
inequities being addressed in Rwanda and projects a bleak
future for Africa.
21 In the United Nations report, 3 models
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postulate different levels of spending, government and international
concern, and care outcomes. The most optimistic
scenario forecasts 53 million African deaths and 48 million
new infections, whereas the most pessimistic estimates
66 million deaths and 89 million new infections. Even more
problematic is the markedly insufficient funding allotted by
each of the scenarios over the next 25 years: between $70
and $195 billion. Where in this accounting is the cost of
having waited so long to distribute antiretroviral medications
or to treat tuberculosis or prevent opportunistic infections?
What is the moral cost of not providing care to
Africans because they lack resources?
Only a radical new vision can hope to surmount this bleak
prescription. The HIV epidemic calls for a new model that
recasts and overcomes the constraints in our current thinking
and practice. Lessons from women in Rwanda demonstrate
that providing HIV care is an urgent matter of both
justice and human survival. There is a moral imperative to
work with these women to rebuild their families, futures,
and country. The importance of these reparations is 2-fold:
first, they are necessary for the survival of Rwandan women
and children and millions more in Africa; and second, reparations
will allow individuals from resource-rich countries
to transform into true-world citizens, who are knowledgeable
about history, tragedy and exploitation, and the ability
to transform the world to one in which women's rights,
human rights, and the right to health are not violated but
respected, supported, and fully integrated into public health
policy and government practice.
Financial Disclosures:
None reported.
Funding/Support:
This work was funded in part by grant U01-AI-35004 from the
National Institutes of Health.
Role of the Sponsor:
The National Institutes of Health did not participate in the
design or the preparation, review, or approval of the manuscript.
Disclaimer:
The views expressed in this article are those of the authors and do not
necessarily reflect the opinions of the National Institutes of Health.
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