Africa's Silent Killer
Scattered gains in the battle against AIDS help nurses carry on their work in the face of formidable challenges

By Cathryn Domrose
November 20, 2003

In a soft, lilting voice, Lucy Nthabiseng Makoae, Ph.D., MPH, RN, described the ravages of an epidemic that is destroying her country, Lesotho, a small African republic in southern Africa.

More than a third of adults in Lesotho are infected with HIV or AIDS. An estimated one in 10 children has the disease. Life expectancy has dropped from 60 to 49 years old, probably because of AIDS. Health workers believe the disease is increasing among infants because, Makoae said, "we just see babies dying maybe after one year, two years. They don't seem to reach four years."

The first time Makoae saw 14-year-old children living with AIDS in the United States, she couldn't believe her eyes, she told a group of nurses and other health professionals who gathered in a conference room at the University of California, San Francisco School of Nursing to hear her speak.

They were running around, playing, talking. "They looked healthy," Makoae said. "Here [in the United States], you see healthy people living with HIV. With us, when you talk about AIDS, you talk about death."

In the United States, Canada, much of Western Europe and parts of the rest of the world, AIDS is a dangerous, chronic disease, but no longer a death sentence. In sub-Saharan Africa, in some of the poorest countries in the world, hundreds die every day from an illness most won't even admit they have.

Nurses like Makoae are bearing the brunt of the epidemic in many of these countries. They run the clinics, care for the sick in hospitals, educate people in the communities and try to ease the incredible stigma around the illness. But a combination of poverty, illness and despair has depleted their ranks considerably. They are exhausted and demoralized, report African and U.S. nurses who have worked in Africa.

Nurses say that in some African countries, this grim picture may be starting to change, thanks to education and prevention programs and the introduction of drugs that have made HIV/AIDS a "manageable" disease in the United States and Western Europe. But without a massive infusion of help from the rest of the world-including the medical and nursing communities-the epidemic will have little chance of abating, say nurses who have worked in Africa.

They add that any aid must support health care workers in Africa who understand their communities and cultures, rather than be imposed by outsiders. To this end, many are involved in small community projects, supporting Africans in creating training programs for health care workers, building clinics and starting drug programs.

According to information from the United Nations, nearly three-quarters of the estimated 40 million people living with HIV or AIDS live in sub-Saharan Africa. About 3.5 million new infections occurred in 2002, and an estimated 2.4 million sub-Saharan Africans died of the disease last year. About 10 million young people, aged 15 to 24, and almost 3 million children are living with HIV. In some countries, an estimated 40 percent of the adult population is infected. No one knows for certain, however, because most people never get tested for HIV.

The pandemic has wreaked havoc on already strained health budgets and, for many countries, erased what little progress they have made in improving health standards. Life expectancy at birth in southern Africa, which rose from 44 years in the early 1950s to 59 in the early 1990s, is expected to drop to 45 years between 2005 and 2010 because of AIDS. The United Nations expects the AIDS death toll to peak at the end of this decade.

"We have never seen a disease like AIDS," Makoae said. "It affects every system of the body. We do not know what we can do."

Universal education

Kathleen Fordham Norr, Ph.D., an associate professor at the University of Illinois at Chicago College of Nursing, has helped research and develop a nurse-coordinated HIV prevention and education program for health care workers in Botswana and Malawi, two African countries where the epidemic has hit hard. Norr, a health sociologist, is working with researchers in Malawi to expand and evaluate the program.

In urban, government-run hospitals in Malawi, patients are grouped together in open wards, regardless of their illness. Tuberculosis patients lie next to AIDS patients. One nurse and one or two paid attendants may look after 40 very ill patients, Norr said. "The situation is overwhelming." The training program she helped develop aims to teach AIDS education and prevention to everyone in the hospital, including maintenance workers and security guards.

"Because very little testing occurs and the majority of people in the hospital are HIV-positive, there's really no such thing as an AIDS nurse," she said. "Most health workers have no idea whether they themselves are infected."

Educating hospital workers about how to prevent HIV infection is difficult because hospitals and clinics have little money for protective supplies, she said.

Norr has seen nurses use a cardboard box to dispose of used needles. She has seen workers sweep used needles from the floor and deposit them into an open incinerator, where curious children might pick them up.

"There are a lot of things that health care workers can do something about" to protect themselves, she said.

Even when the supplies are available, she said, hospital workers continue to treat them as scarce commodities. "Nurses put on one pair of gloves and wear them all day," she said. More gloves may be available, but these are kept locked up. Family members, who do much of the feeding, bathing and basic bodily care in a Malawi hospital, usually receive no protective supplies or instruction on how to protect themselves.

In some ways, the situation for health care workers in sub-Saharan Africa now is similar to what it was in the United States in the early 1980s, say nurses who have worked there. Some governments are unwilling to spend money on AIDS/HIV prevention and education. Talking about AIDS is a social taboo. People don't want to admit they have the disease.

But Africa's situation is also far more dire than that of any other country dealing with an epidemic, nurses say, because of the continent's extreme poverty, hunger, civil unrest and wars in some areas, a mix of languages, traditions and cultures and an exodus of health care workers.

Deadly silence

Educating communities about AIDS is difficult, nurses say, partly because of the stigma of the disease and partly because nurses and other health care workers are not used to talking to young people about sexual practices.

Although the epidemic has been going strong for several years and so many have died, in many countries the stigma of having AIDS has not abated.

"The major problem is the silence," Makoae said. "At home, we don't talk about AIDS. If a man is known to be infected, the community believes his whole house is infected."

Because fewer than 1 percent of people with HIV in sub-Saharan Africa have access to or can afford drugs, people see no reason to get tested, Norr said. "Most people die without being tested."

In Malawi, many young people learn about sex culturally through ceremonies, Norr said. "Parents don't talk to their children about sexuality and generally, adults don't talk to young people about sexuality." In Lesotho, as in other parts of Africa, women can't talk about things like condom use with their husbands, Makoae said, let alone talk to their children about safe sex and HIV transmission.

Such attitudes mean that solutions from the United States and Western Europe will not always work in Africa, nurses say. "We are so different," Makoae said. "We don't have resources like your countries do. Culturally, we are totally different. We need to understand the stigma of this disease from our perspective."

Maria Kosmetatos, MS, FNP, arrived in Mutare, Zimbabwe, two years ago carrying a box of donated medical supplies for a rural clinic and about $20,000 she and other community members had raised in Portland, Ore. She found nothing as she had expected it to be-even though she thought she was arriving with almost no expectations.

The clinic where she had imagined she would be working had been leveled because it was ready to fall down. The community she intended to work with was an Anglican mission village called St. Werburgh, where tribal leaders and clergy worked together. It was in a rural area, where nearly half the adults were infected with HIV, but no one admitted to having AIDS. Most were cared for in homes without even basic pain medications.

"I got there and it was one of those eye-opening experiences," said Kosmetatos, an HIV nurse practitioner at the Multnomah County Health Department HIV clinic in Portland. At first, she felt overwhelmed. Then she realized that the best way to help was to offer whatever support she could to grass-roots organizations already working in Africa.

"We've just basically encouraged them to continue with what they are doing," she said. "You can't go out there and build an HIV clinic, you have to build a general clinic that provides HIV care. People in Zimbabwe will not go to an HIV clinic."

With the funds Kosmetatos helped raise through a sister-city connection between Mutare and Portland, the community has built a new clinic and nurses quarters. But the clinic committee has had difficulty finding a nurse to run the facility. Nurses or nurses aides run almost all the clinics in Zimbabwe, Kosmetatos said, but rural areas have an especially difficult time attracting nurses to work with them.

Mass exodus

"If you're a nurse, you're not going to stay in Zimbabwe," Kosmetatos said. "There's no cooking oil, no jobs, 70 percent of the people live in horrific poverty. You'll go to South Africa, to England, to someplace where you can support a family. The economy is so bad that all of the professionals have left."

The situation is similar in other parts of Africa. Nurses are leaving the area in droves for safer and better-paying jobs in other countries. Young people don't want to go into nursing. Many health care workers are sick or dying of AIDS themselves, as are teachers and other professionals.

"We don't have many students," Makoae said. "People are afraid to go into nursing." Low salaries and a mandatory retirement age of 55 also contribute to a severe nursing shortage in Lesotho, she said. "The morale of the nurses is really low. Very, very low given the fact that people are expected to take care of patients without resources."

In the midst of this bleak picture, some nurses have found pockets of hope. In Malawi, Norr said she is seeing a gradual change in attitudes toward talking about sex.

"They all agree it's uncomfortable, but it's something they need to do." She pointed out successful education campaigns in Uganda, where the HIV epidemic seems to have slowed. "This is something that needs a societywide effort. It's not just the health care community's problem."

But such cooperation varies from country to country, depending on the political and economic situation. In Uganda, Makoae said, the government is committed to battling the spread of AIDS. In Lesotho, she said, "People just talk and do nothing to provide the resources that are required to fight the epidemic."

Different countries in Africa have vastly different responses, Kosmetatos said. In Zimbabwe, she has seen little government help, but religious and community groups are trying to respond. She is working with activists in Mutare who have HIV. The group of primarily women is trying to educate people about the illness, as well as provide counseling, testing, day care and other support for people with HIV/AIDS, she said.

"They're making some headway, but the stigma is still really profound," she said. She thinks this may change as medications become available and people are more willing to be tested and admit they have the disease. Despite the effort needed to create drug programs in poor, rural African nations and despite fears that people won't take the medications correctly or will stop taking them and possibly render them ineffective, she believes medication must be provided to Africans living with HIV.

"In some countries it is much easier than others" to provide drugs, she said, "but I think it's absolutely feasible. It's going to take work, but it can happen and it needs to happen."

Nancy Calles, RN, ACRN, an HIV education and research coordinator for the Baylor International Pediatric AIDS Institute, is helping to conduct clinical trials of antiretroviral drugs for HIV-positive children in Botswana and has been working at the recently opened Botswana-Baylor Children's Clinical Center of Excellence there.

The clinic is treating about 500 children with HIV, Calles said. There is a long waiting list. "The only setback is the limit of personnel," she said. The clinic has two nurses and a retired nurse who does outreach. It's not that people don't want to work at the clinic, she added. "A lot of the health care workers are sick and dying of HIV."

Setting up a regime of antiretroviral medicines for people who are HIV-positive takes a lot of a nurse's time, Calles said. A typical visit may take half a day if the clinic is short-staffed. People usually show up early in the day, no matter what time their appointment is, and stand in line. Many travel two or three hours by bus to get to the clinic. Patients receive a 30-day supply of medications.

"Compliance is pretty good," Calles said. "The moms see that their kids are doing well and they make sure they are taking the medications." Seeing children who once could barely move return to walking, running, talking and going to school has been a huge morale booster for the nurses, she said.

"They seem like a happier group. They really love seeing the kids come back to the clinic getting better every time. They see that they make a big difference in the lives of these children instead of just watching them die."

Contact Cathryn Domrose at kaguilar@well.com