Care and support for people living with HIV/AIDS

Report on the global HIV/AIDS epidemic – June 2000zations have played a role in health care, for instance by putting pressure on thepharmaceutical industry to reduce the prices of drugs. AIDS service organizations,created early in the epidemic by pioneers in the gay community, are still bringingpsychological and social support to people with HIV.Even in this favoured part of the world, however, care and support are not universallyoptimal. People who are prescribed antiretroviral therapy may not get enough helpto devise practical ways of adhering to their often-complicated drug regimens.Access to health care and especially to antiretroviral drugs can be problematic forillegal migrants, uninsured individuals in countries without national health insurance,and residents served by less-favoured health facilities in countries where expensivedrugs are “rationed”. Some people have poor contact with the health system, or maynot be trusted to take their drugs regularly. In a study of drug users in one city in theUSA, half the people who met the criteria for treatment under national guidelineswere receiving no antiretroviral therapy at all, and just 14% were on the more expensivethree-drug combinations. A study of injecting drug users in Canada showed that60% were not receiving any antiretrovirals nearly a year after becoming medically eligiblefor this therapy; women were more than twice as likely as men to be untreated.In some countries, there is also less social support available for injecting drug users.The developing countries faced a radically different situation. By the time the enormousnew challenge of AIDS appeared, the health services with their dwindlingresources were already hard-pressed to cope with a host of older diseases. Usingthe 1991 guidance published by the World Health Organization (WHO), many countriesdid draw up clinical management guidelines for handling AIDS in children andadults by the mid-1990s. In practice, however, little action followed – apart from thestrengthening of tuberculosis programmes in places where an explosion of TB casesfollowed in the wake of the expanding epidemic of HIV. Carriers of the tubercle bacilluswho become infected with HIV face a 30–50-fold increase in their risk of developingactive tuberculosis.In part, the health sector’s failure to deliver care for people with HIV was linked tothe widespread perception of AIDS as a hopeless, untreatable disease, even thoughdrugs did exist to combat opportunistic diseases and distressing symptoms. Untilthe development of highly active antiretroviral therapy around 1995, it seemed thatone could do very little about HIV infection. Investing in care was rarely given highpriority. The need to invest in HIV prevention and other essential services often tookprecedence over the provision of care services in many developing countries.As the suffering caused by the epidemic grew, community-based and nongovernmentalorganizations, including organizations of people living with HIV or AIDS,stepped into the vacuum. Using a creative mixture of social, psychological andhealth care approaches, these groups did whatever they could to meet the widerangingneeds of the millions of people developing HIV-related illness and dying ofAIDS. At the same time, they kept up pressure on the health system for more effectivesupport and therapy. These demands were fuelled by the realization in the mid-86