Support Mechanisms

A person diagnosed with HIV infection faces many challenges, including choosing the best course of treatment, paying for health care, and providing for the needs of children in the family while ill. In addition to these practical considerations, people with HIV infection must cope with the emotional toll associated with the diagnosis of a potentially fatal illness. The social stigma that continues to surround a diagnosis of AIDS because of the disease’s prevalence among gay men or drug users causes many people to avoid telling family or friends about their illness. People with AIDS often feel incredibly lonely as they try to cope with a devastating illness on their own. Loneliness, anxiety, fear, anger, and other emotions often require as much attention as the medical illnesses common to HIV infection.

Since the AIDS epidemic began in the United States in 1981, grassroots organizations have been created to meet the medical and emotional needs of people who have AIDS and also to protect their civil rights. The Gay Men’s Health Crisis, founded in 1982, was the first nonprofit organization to provide medical, education, and advocacy services for people with AIDS. The Los Angeles Shanti Group was established in 1983 to provide emotional support and medical guidance to people with AIDS and other life-threatening illnesses. Activist organizations such as the AIDS Coalition to Unleash Power (ACT UP), founded in 1986, have been created to initiate faster change in public policies and to speed up the course of AIDS clinical research. American Foundation for AIDS Research (AMFAR), created in 1985, is the nation’s leading nonprofit organization dedicated to the support of AIDS research and the advocacy of fair and compassionate AIDS-related public policies. In Canada, the AIDS Committee of Toronto (ACT) was established in 1983 by community activists intent on fighting for the civil rights of people infected with HIV. As the AIDS epidemic grew, ACT expanded its mission to help people disabled by the disease and to spread health information to halt the spread of the disease. AIDS Vancouver (AV), also established in 1983, became the principal education, prevention, and support service organization for that city.

Counseling centers and churches provide individual or group counseling to help people with HIV infection or AIDS share their feelings, problems, and coping mechanisms with others. Family counseling can address the emotions of other family members who are disturbed by the diagnosis of HIV infection in another family member. Grief counseling also helps people who have lost friends or family members to AIDS.

In the United States and Canada, government-funded and privately funded organizations help people cope with disease. For instance, local, city-funded clinics provide AIDS testing as well as counseling to prepare people for a test result that indicates HIV infection. Health experts at clinics explain the medical progression of the illness, arrange medical appointments with health-care specialists, and help people choose appropriate treatment options. State-appointed social workers and community nonprofit organizations help people find federally funded programs that offset the high cost of medical care and child care.

The United States Congress has passed legislation to help HIV-infected individuals. In 1990 the Americans with Disabilities Act (ADA) was enacted, protecting people with disabling diseases, including AIDS, from discrimination in activities such as applying for jobs or buying a house. The Ryan White Comprehensive AIDS Resources Emergency Act was established in 1990 and reauthorized in 1996. This program provides medical and dental care, counseling, transportation, and home and hospice care for low-income or uninsured people living with AIDS. The AIDS Drug Assistance Program (ADAP) is funded in large part by this act and administered by all 50 states. It pays for costly AIDS medications for people who do not have private insurance and who are not poor enough to be eligible for Medicaid.