Rwanda

The stigma of AIDS in Rwanda means people wait years to get tested and avoid changing behaviors so as not to give away their infection status

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Background

Rwanda is a tiny country that lies in the Great Lakes region of eastern Africa. It borders two other "focus countries" receiving funds from PEPFAR, the President's Emergency Plan for AIDS Relief: Uganda to the north and Tanzania to the east. It also lies next to the Democratic Republic of the Congo to the west and Burundi to the south.

Rwanda is situated in a particularly war-torn region of Africa. Ongoing civil violence plagues the Democratic Republic of the Congo; the Lord's Resistance Army has been fighting with government troops in northern Uganda for two decades; Rwanda itself suffered a bloody civil war in the mid-1990s. Violence is always a looming threat, with rebel Hutu Rwandan groups living in the Democratic Republic of the Congo determined to overthrow the Tutsi-run Rwandan government.

The majority Hutus and minority Tutsis are Rwanda's two main tribal groups. Relations had always been tense between them, but in 1994, extremist Hutu militia groups massacred 800,000 Tutsis and moderate Hutus in just over 100 days. Ignored by the international community as it unfolded, it is one of the worst acts of genocide on record in modern history.

It is estimated that at least 250,000 women were raped during the genocide, and, as a result, hundreds of thousands of women and girls were infected with HIV. Many of them and others were widowed and left with few resources. Only recently have steps been taken to ensure that the women receive the care and treatment they need.

The face of HIV

Rwanda is the most densely populated country in Africa. Though urban areas have higher HIV prevalence rates, new infection rates have stabilized there, while they are still increasing in rural areas, where more than 90 percent of the population lives.

The number of orphans and single-parent households is rising because of AIDS-related deaths, and girls are often forced to drop out of school to care for their families. The death of AIDS victims is also depleting the labor force.

A study conducted for the Joint United Nations Program on HIV/AIDS by the Johns Hopkins University Center for Communication Programs found that stigma against the disease is still a problem in Rwanda. Many people living with HIV have been abandoned by their families, which fear contracting the disease or feel it is wasteful to spend valuable resources on someone who is likely to die soon anyway. Those who do stay to help are often impoverished and have few financial resources to offer.

Many people living with HIV never reveal their status and avoid changing their behavior — such as giving up alcohol, ending unsafe sex or even going for treatment — to avoid any hint that they are infected.

Moreover, many Rwandans tend to wait years to obtain an HIV test from the time they suspect they may be infected. Some of the reasons for the delay include fear of rejection and premature death and misinformation about the causes of HIV. One local belief is that those with AIDS are bewitched.

Challenges to fighting the HIV epidemic

Rwanda is one of the poorest countries in the world. With a per capita gross annual income of $230, poverty is a huge obstacle to fighting the disease, hindering access to vital services and information.

More than 40 percent of the population is under 15 years old, and more than 60 percent lives below the poverty level. Up to 36 percent of households are headed by women, many of whom are poorly educated and ill-equipped to rise in the job market.

More than one-third of the country's population migrated during the genocide. That greatly affected the face of the HIV epidemic in Rwanda by spreading the disease to different populations. Two million people fled to neighboring countries while 1 million more were displaced internally. Many refugees have returned, but some continue to live in the Democratic Republic of the Congo, Uganda and Zambia. About 38,000 refugees from other countries live in Rwanda today, as well as nearly 4,000 internally displaced Rwandans.

The government incarcerated thousands on genocide charges in the tragedy's aftermath. Suspects awaited trial in overcrowded prisons for more than a decade. In 2005, the government transferred thousands of the cases to local courts and began the release of 36,000 inmates, about half the total number of genocide suspects still in prison. Their release is an area of concern because many inmates are HIV-positive. Reintegrating them into society and preventing them from spreading the disease are challenges in fighting the epidemic.

Rwandan government response

According to John Dunlop, the U.S. Agency for International Development's supervisory health officer for Rwanda, the Rwandan government has "been with us every step of the way," and "provides the kind of bold leadership" necessary for successful programs.

In 2002, the Rwandan government implemented the Strategic Framework for HIV/AIDS Control 2002-2006, a community-based effort that focuses on strengthening programs that help prevent HIV transmission; monitoring the epidemic better; improving care for infected and affected people; reducing poverty; and being more responsive and inclusive in dealing with the disease.

Since the program was launched, the number of voluntary testing centers increased from one to 20 in just three years.

Other government ministries also have programs in place for targeted groups. The Ministry of Defense, for example, works with soldiers and their families to promote behavior change and use of condoms. The Ministry of Education provides textbooks that include HIV/AIDS awareness and promotes the creation of anti-AIDS clubs in schools.

U.S. government response

The U.S., through PEPFAR, the five-year, $15 billion initiative to combat HIV/AIDS abroad, is the largest donor for HIV/AIDS programs in Rwanda, followed by the Global Fund to Fight AIDS, Tuberculosis and Malaria and the World Bank. Donor activity in Rwanda is coordinated through the HIV/AIDS Donor Cluster, set up by the United Nations Development Program to include 15 donors and representatives from several Rwandan government agencies.

PEPFAR has partnerships with dozens of nongovernmental organizations (NGOs) in Rwanda, including several faith-based organizations. More than half of the population identifies itself as Catholic. Faith-based organizations, according to Dunlop, make up a large percentage of health care services providers and assist PEPFAR in getting its programs out "in a fairly massive way." Their reach extends into all levels of society.

In fiscal 2005, Rwanda received $14.2 million through PEPFAR for prevention activities, which was 30.7 percent of the total funding allocated for prevention, care and treatment. According to the 2005 Country Operational Plan from the U.S. State Department's Office of the Global AIDS Coordinator (OGAC), Rwanda has a strong tradition of abstinence and faithfulness programs, operated by faith-based organizations and other local organizations. Implementation, however, had not been coordinated, and behavioral health messages had been inconsistent. With the help of PEPFAR, Rwanda developed a National Prevention Plan aimed at coordinating messages and efforts at the local and national level, including radio and TV dramas and literature emphasizing abstinence and faithfulness messages.

In fiscal 2005, PEPFAR gave $11.5 million — or 25 percent of the prevention, care and treatment total — for care programs, which focused on increasing outpatient care at health centers. In addition, sub-grants were made to local organizations and NGOs to support home-based care and enriched nutrition programs, as well as basic health care services, including safe water, and malaria nets.

According to the OGAC, PEPFAR greatly exceeded its care targets in fiscal 2005, with 89,700 people receiving care and support and 15,900 receiving antiretroviral drugs, which have been credited with transforming HIV/AIDS from a fatal condition to a manageable illness.

PEPFAR allocated $20.5 million — or 44.3 percent of the prevention, care and treatment total — for treatment programs in 2005 to beef up local institutions' program capacity and accelerate the transfer of all treatment activities to local management.

Nearly $10 million in PEPFAR funds covered other costs, such as setting up better training for laboratory technicians and helping the Department of Pharmacy develop a National Drug Authority to handle drug registration, quality assurance, prescribing and dispensing authority, and narcotic regulation.

"It used to be that there were always funerals," Dunlop said. "Now, my perception is, there are a lot fewer funerals. Not as many people are dying, and I think that is a result of our programs."

 

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