America Living With AIDS

C H A P T E R T H R E E
CARING FOR PEOPLE
WITH HIV DISEASE
deally, care for people with HIV disease includes a broad range of health care and social services designed to enhance the
quality of life, maximize individual choice, and minimize hospital and institutionbased care. Such services should be rendered with compassion in a manner that
allows people with HIV disease and their loved ones to act as partners with their
caregivers. This chapter recommends ways of moving toward this goal.
HIV disease, especially in its later stages, presents complex challenges for caregivers. The host of opportunistic infections that characterize AIDS may attack virtually any part of the body. HIV disease stubbornly refuses to be limited to any single
organ or treatment strategy, since its fundamental mechanism is the pervasive malfunction of the immune system. As long as ten years may pass between infection
with the virus and development of full-blown AIDS. Given the great variability in
the natural history of HIV, care needs vary greatly over the course of the disease.
Care needs also vary among different populations. HIV disease in women is manifested quite differently than in men; HIV disease in children is manifested quite differently than in adults. Intravenous drug users often suffer from extensive concomitant health problems that are exacerbated by HIV disease. Neurological
complications of HIV disease may pose unique challenges. Individuals with HIV disease also have unique social and psychological needs as a result of the dire nature of
the illness and the stigma that accompanies diagnosis.
The epidemic is widening most rapidly among poor people in inner cities-a
group that historically has had difficulty in gaining access to and finding payment for
primary care services. The epidemic also primarily strikes young adults, whereas systems of care for the chronically ill or disabled tend to be tailored to the needs of the
elderly. The sheer volume of people who have HIV disease or are at risk of HIV
infection in certain hard-hit cities complicates care strategies still further. There are
many in the early phases of infection who could benefit from treatments designed to

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