About 18 years ago, Susan Wilson, MSN, FNP, entered a hospital room to care for a patient with a mysterious disease. The hospital kept the patient isolated because doctors knew almost nothing about his illness. No one knew how it was contracted or transmitted. All that most health workers knew was that it was fatal.

Wilson wore gloves and moved carefully around the patient, a young man. Like the others who entered his room, she was afraid. As she approached the patient, he reached up to her, crying words that echo in her ears to this day. "Nobody stays in here. Nobody touches me."

Around the country, nurses who came into contact with AIDS patients were hearing similar cries. Most did what Wilson did. They studied everything they could about the new disease and worked to educate co-workers and the community that AIDS patients did not have to be kept in isolation or denied human contact.

Twenty years later, new drugs have changed AIDS and HIV from a mysterious killer to a manageable chronic illness, like diabetes or heart disease.

But the spotlight on AIDS also has dimmed. Much of the fear surrounding the illness is gone, but so is the public and media attention.

Most people with HIV/AIDS are poor, with little education or resources, say the nurses who treat these patients. The emphasis for nurses has switched from comfort care to getting people to take their medicines correctly, and concerns about resistance and short- and long-term side effects.

But the need for continuing education of patients, health care workers and the public has never gone away, said Adele Webb, Ph.D., RN, interim nurse executive director of the Association of Nurses in AIDS Care, based in Akron, Ohio.

"Education is your best ammunition," she said.

AIDS first was reported in the United States in 1981. The disease first was called Gay Related Immune Disease, then HTLV-3 and finally Acquired Immune Deficiency Syndrome. More than 700,000 cases of AIDS have been reported in the United States since the epidemic began, and as many as 900,000 Americans may be infected with HIV, according to the National Institutes of Health.

"HIV put a strong magnifying glass onto problems in the health care system," said Bill Holzemer, Ph.D., RN, FAAN, professor and chair of the department of community health systems and director of the International Center for HIV/AIDS Research and Clinical Training in Nursing at the University of California, San Francisco School of Nursing.

It has changed the way health care workers think about discharge planning, case management, home care, access to drugs, end-of-life care and occupational health risks, he said.

"HIV demonstrated new models of community care" that now are used for other diseases, such as breast cancer, Holzemer said. "Nurses had to learn how to work with the community in new and different ways."

AIDS patients in the epidemic's early years were often hospitalized as they became sick. Many had dementia, diarrhea and wasting, recalled Danette Kodet, RN, a nurse at the UCSF Medical Center, who took care of AIDS patients on the hospital's medical unit in the mid-1980s. Nurses did a lot of comfort care, Kodet said.

Some, like Steve Wroblewski, an AIDS-certified RN, now a research nurse and study coordinator at Fred Hutchinson Cancer Research Center in Seattle, worked in hospice care. "It was our chance to take care of people at their sickest and to be with them as they passed," he said.

As the epidemic progressed, nurses were at the forefront, mobilizing with communities to educate people about safe-sex practices and supporting partners and families of those who were ill. They cared for babies with HIV in maternity units. They helped manage clinical trials of new drugs and worked with governments to develop AIDS policies.

By the early 1990s, many who cared for AIDS patients felt helpless and exhausted. Even the advent of AZT, one of the earliest drugs to combat HIV and AIDS, didn't bring much hope, recalled Catherine Lyons, MS, MPH, RN, who cares for HIV/AIDS patients as a nurse practitioner at the UCSF Positive Health Practice at San Francisco General Hospital. Not until the advent of protease inhibitors about five years ago, she said, did she recall a sense that HIV might become at least a manageable disease.

Various combinations of drugs, called antiretroviral therapy, do not cure HIV or AIDS, but they can slow the virus's progression and improve the health of many with AIDS.

Researchers credit the antiretrovirals with reducing AIDS deaths in the United States since 1997 by nearly 50 percent, according to the NIH. Most AIDS patients no longer are seen in hospitals, but as outpatients in clinics, often by nurse practitioners.

A disease of the poor
Although the death rate has dropped for AIDS patients, the nurses who care for them report new complications.

Wilson, assistant director of the Infectious Disease Clinic at the University of North Carolina Hospital in Chapel Hill, said that most patients at her clinic no longer are well-educated gay men from supportive communities. Often, they are substance abusers, mentally ill, or people with low self-esteem and little community support.

The miracle drugs that control their disease are expensive and often have painful side effects. They are complicated to take, and must be taken exactly as prescribed. Nurses report patients with "pill fatigue," who simply get fed up with taking up to 20 pills for their condition, especially if they don't feel sick.

"AIDS doesn't have the glamour it once had," Lyons said. "AIDS is really a disease of the poor at this point in time."

In many ways caring for HIV/AIDS patients today is much harder than it was in the mid-1980s, Wilson said.

"You have the patients that are going to do really well and then you have those that you clearly know aren't taking their meds and you're beating your head against the wall and it's very frustrating."

The difficulty of getting patients to take their medications has led to a new specialty for AIDS health care workers called direct observation therapy, Wroblewski said. Nurses in Seattle crawl under aqueducts if they have to, to find their homeless or substance-abusing patients and deliver their medicine, he said. "Just like they used to do with the old TB patients. That's what the new generation of HIV nurses is doing."

The AIDS/HIV epidemic has grown rapidly among minorities and women. It is a leading killer of African-American men. Anecdotal evidence also shows HIV increasing among teens and young people, said Nancy Kline, Ph.D., RN, assistant professor of pediatrics at the Baylor College of Medicine, section of retrovirology, in Houston.

"Young adults think, 'It's not going to happen to me," she said. "It's just where they're coming from, developmentally."

Fortunately, maternal-infant AIDS transmission has declined considerably, she said, thanks to drugs that reduce chances of babies being infected by HIV-positive mothers to less than 2 percent.

But children who contracted the disease in the past, as well as recently diagnosed teens, often become discouraged by the medicines they must take, she said. Like some adults, they rebel, stop taking their medication and sometimes become resistant to it.

"HIV is the only chronic illness where if you screw up your medication regimen, there's no going back," Kline said.

Nurses continue to educate people about HIV and AIDS. Kline is amazed at how many people still don't know the basics. She spent a recent plane trip setting straight a business executive who asked, "Can you get HIV from mosquitoes?"

Even some health care workers-including nurses-still are frightened of AIDS, especially in rural areas, said Tony Adinolfi, MSN, ANP, an AIDS certified RN, assistant clinical professor at Duke University School of Nursing and nurse practitioner with the Duke University Medical Center Division of Infectious Diseases Clinic in North Carolina.

"We have some folks at the little hospitals who do anything to avoid caring for these patients," he said. On the other hand, most of his graduate students "accept it as any old disease because they've dealt with it their whole careers."

Until there's a cure, nurses say, the greatest hope for reducing HIV/AIDS is education-particularly sex education-and prevention targeted to the groups at greatest risk. Today's medications may save lives now, but no one knows their long-term effects, Wroblewski said. "What's going to happen to these people in their 20s or 30s after they've been on medications for 15 years?"

"We're going to be there for them," he added, "but we'll have to learn about their needs as we go along."

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Safe haven

In the United States, nurses in HIV/AIDS care deal with patients who don't understand the importance of taking
their medications, communities that resist sex education and keeping the public aware that although HIV/AIDS has become a manageable disease, itstill a killer.

In Africa, nurses deal with hospitals that have shortages of surgical gloves and even water, families who lie about their HIV-positive status because they're afraid of being ostracized, and governments so poor they can't afford to provide the antiretroviral drugs that control the disease, even at a discount.

But no one in Africa needs to be reminded that AIDS is a killer.

Of the 21.8 million people who have died of AIDS since the illness was identified 20 years ago, three-quarters are African, according to Sheila Dinotshe Tlou, Ph.D., RN, associate professor of nursing education at the University of Botswana. More than 24.2 million adults are infected with HIV in sub-Saharan Africa.

Today's situation in Tanzania is a nurse's worst nightmare, said Anne Outwater, MS, RN, medical officer for the Peace Corps there. In 1991, Outwater worked
in a leading referral hospital in Tanzania,
she said. She worked on a floor with 80 patients-about half of them with AIDS-and three toilets. "There was not enough water for people to even bathe," she said. "I was so shocked. I couldn't do much. You can't nurse if you don't have water, sanitation or gowns."

The situation has become worse as AIDS has continued to spread, Outwater said.

Until even a few years ago, many Africans with HIV or AIDS didn't know why they were sick, said Nancy

Kline, Ph.D., RN, assistant professor of pediatrics at the Baylor College of Medicine, section of retrovirology,
in Houston and a nurse practitioner with the Baylor International Pediatric AIDS Institute. "There was little education for nurses
and other health care workers on HIV/AIDS."

Prevention efforts in Africa now focus on grade-school children, said Bill Holzemer, Ph.D., RN, FAAN, director of the International HIV/AIDS Nursing Care Center at the UCSF School of Nursing. "The message is a new generation free of AIDS," he said.

The education campaign holds out some hope, Holzemer said, but because sex is such an intrinsic part of human nature, he believes the only real solution to the HIV/AIDS epidemic in Africa is a vaccine.

Two years ago, at the request of nurses in southern Africa, the Baylor institute began working with African collaborators to
develop a curriculum for nurses in HIV/AIDS prevention and care, Kline said. The curriculum addresses many specifically
African cultural issues, she said.

"There's a big stigma associated with HIV/AIDS in many countries in Africa," she said. Families fear being evicted by their landlord, being run out by their neighbors or losing their homes.

Antiretroviral drugs, which have saved many lives in the United States, finally are becoming available in some parts of Africa. But the drugs are prohibitively expensive, especially given the number of people with HIV.

Social problems such as lack of refrigeration, arduous journeys to clinics and the stigma of picking up the drugs could make it difficult for many Africans to take the medications the way they are prescribed, Kline said.

On the positive side, communities are discussing the disease much more openly, she said. Nurses, eager for more information, have embraced Baylor's curriculum. "They are teaching themselves," she said.

But controlling the AIDS epidemic is not something developing countries in Africa and elsewhere can do by themselves, Kline said. "It's going to take commitment from everybody else in the world."