Care and support for people living with HIV/AIDS

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Care and support for people living with HIV/AIDSCare and support for people living withHIV/AIDSHIV is a slow-acting virus that typically takes years to produce illness in an infectedperson, in contrast to most viruses, which cause disease in a matter of days orweeks. Over the decade or so during which an HIV-positive person’s immunedefences gradually become undermined, various pathogens in the environment –other viruses, bacteria, fungi and parasites – take advantage of this weakness toattack and cause illnesses of various kinds. This is why the infections and cancersseen in HIV-positive individuals are called “opportunistic”.Effective therapies exist to prevent, treat or even cure many of these opportunisticdiseases, and to relieve the symptoms associated with them, which include fever,coughing, itching, difficulty in breathing or swallowing and chronic diarrhoea. Otherdrugs, developed much more recently, attack HIV itself – a so-called retrovirus,which explains why these new drugs are called antiretrovirals.The needs of people with HIV or AIDS extend far beyond drugs and health care,however. Those who suspect or learn they are infected need psychological supportto cope with the implications of having a life-threatening disease. The fear of beingostracized by one’s family or community must be dealt with. People who are marriedor in a stable relationship need support in protecting loved ones from the virus,breaking the news to their partner and dealing with the issue of extramarital sex(women may find themselves under suspicion even when they have been infectedby their stable partner). At the same time, those affected by the epidemic need socialsupport to alleviate the many consequences of an HIV diagnosis, repeated bouts ofillness and ultimately death, including the impoverishment of families already near orbelow the poverty line (see page 27).Meeting the needs: challenges and achievementsIn high-income countries, care and support are now taken more or less for granted.There is generally good access to antiretroviral drugs, which combat the virusdirectly and improve health and survival. People with HIV or AIDS and their organi-85
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
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Care and support for people living with HIV/AIDS

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