Results tagged “Commentary” from Anne-christine d’Adesky

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. (Reprinted) JAMA, August 3, 2005--Vol 294, No. 5 613

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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

COMMENTARIES

614 JAMA, August 3, 2005--Vol 294, No. 5 (Reprinted) ©2005 American Medical Association. All rights reserved.

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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.

REFERENCES

1. d'Adesky A. Rape OutRage: why is an army of rapists getting HIV meds, while

its victims are left to die? [editorial]. POZ magazine. September 2003.

2. Martin SL, Curtis S. Gender-based violence and HIV/AIDS: recognising links

and acting on evidence. Lancet. 2004;363:1410-1411.

3. Joint United Nations Programme on HIV/AIDS. 2004 Report on the Global AIDS

Epidemic. Geneva, Switzerland: UNAIDS; 2004.

4. Human Rights Watch. Leave None to Tell the Story: Genocide in Rwanda. New

York, NY: Human Rights Watch; 2004.

5. Human Rights Watch. Shattered Lives: Sexual Violence During the Rwandan

Genocide and Its Aftermath. New York, NY: Human Rights Watch; 1996.

6. Donovan P. Rape and HIV/AIDS in Rwanda. Lancet. 2002;360:s17-s18.

7. Ward J. If Not Now, When? Addressing Gender-based Violence in Refugee,

Internally Displaced, and Post-conflict Settings: A Global Overview. New York,

NY: The Reproductive Health for Refugees Consortium c/o The Women's Commission

for Refugee Women and Children and the International Rescue Committee;

2002.

8. Amowitz LL, Reis C, Lyons KH, et al. Prevalence of war-related sexual violence

and other human rights abuses among internally displaced persons in Sierra Leone.

JAMA. 2002;287:513-521.

9. Jefferson LR. In War as in Peace: Sexual Violence and Women's Status. New

York, NY: Human Rights Watch; 2004.

10. Watts C, Zimmerman C. Violence against women: global scope and magnitude.

Lancet. 2002;359:1232-1237.

11. Germain A. Reproductive health and human rights. Lancet. 2004;363:65-66.

12. Human Rights Watch. Rwanda: Rape Survivors Find No Justice. New York,

NY: Human Rights Watch; 2004.

13. African Rights. Rwanda: Broken Bodies, Torn Spirits: Living With Genocide,

Rape and HIV/AIDS. Kigali, Rwanda: African Rights; 2004.

14. Pham PN, Weinstein HM, Longman T. Trauma and PTSD symptoms in Rwanda:

implications for attitudes toward justice and reconciliation. JAMA. 2004;292:602-

612.

15. Waal A. HIV/AIDS: the security issue of a lifetime. In: Chen L, Leaning J, Narasimhan

V, eds. Global Health Challenges for Human Security. Cambridge, Mass:

Harvard University Press; 2003:125-139.

16. Dunkle KL, Jewkes RK, Brown HC, et al. Gender-based violence, relationship

power, and risk of HIV infection in women attending antenatal clinics in South

Africa. Lancet. 2004;363:1415-1421.

17. Parker R, Easton D, Klein C. Structural barriers and facilitation in HIV prevention:

a review of international research. AIDS. 2000;14:S22-S32.

18. Castro A, Farmer P. Understanding and addressing AIDS-related stigma: from

anthropological theory to clinical practice in Haiti. Am J Public Health. 2005;95:

53-59.

19. Barkan SE, Melnick SL, Preston-Martin S, et al. The Women's Interagency HIV

Study: WIHS Collaborative Study Group. Epidemiology. 1998;9:117-125.

20. Human Rights Watch. Sexual Violence and Its Consequences Among Displaced

Persons in Darfur and Chad. New York, NY: Human Rights Watch; 2005.

21. Joint United Nations Programme on HIV/AIDS. AIDS in Africa: Three Scenarios

to 2025. Geneva, Switzerland: UNAIDS; 2005.

COMMENTARIES

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