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Stigma: A Most Dangerous Barrier to Care

 

The impact of stigma can be as detrimental as the virus itself. The solitude and lack of support it imposes are deeply wounding to those who suffer it. It should also hurt every one of us, for it is an affront to our common humanity.

Some people with AIDS are being denied basic rights such as food or shelter, and dismissed from jobs they are perfectly fit to perform. They may be shunned by their community, or most tragic of all, by their own family.

The fear of stigma leads to silence, and when it comes to fighting AIDS, silence is death. It suppresses public discussion about AIDS, and deters people from finding out whether they are infected. It can cause people—whether a mother breastfeeding her child or a sexual partner reluctant to disclose their HIV status—to risk transmitting HIV rather than attract suspicion that they might be infected.

- United Nations Secretary General, Kofi Annan1

Today, HIV/AIDS can be treated, often so effectively that those living with it dare to dream about life as grandparents or living into old age. But the stigma of the disease can nevertheless be a paralyzing force, rendering people as vulnerable to the destructive power of AIDS as were the masses of unknowing gay men in San Francisco and New York City almost 35 years ago.

Long before there was HIV/AIDS, social scientists had studied the effects of stigma associated with an array of diseases and disorders, including tuberculosis, leprosy, cancer, alcoholism, and mental illness. When HIV/AIDS emerged, its characteristics matched almost perfectly those that had been identified as leading to disease-related stigma:2,3,4

  • The person with the disease is seen as responsible for having the illness.
  • The disease is both progressive and incurable.
  • The disease is not well understood among the public.
  • The symptoms cannot be concealed.

Today, more than 30 years after the onset of the AIDS pandemic, a number of definitions exist for HIV/AIDS stigma, each encompassing the complex and often deadly effects that stigma can have on its target. Consider this example:

AIDS-related stigma and discrimination refer to prejudice, negative attitudes, abuse, and maltreatment directed at people living with HIV and AIDS. The consequences of stigma and discrimination are wide-ranging: being shunned by family, peers, and the wider community; poor treatment in health care and education settings; an erosion of rights; psychological damage; and a negative effect on the success of HIV testing and treatment.5

Stigma is perhaps the most complex of the many barriers to health care for PLWHA.6,7,8 Rather than a singular phenomenon, stigma encompasses discriminatory practices, actions, and attitudes that intersect and amplify other forms of prejudice, such as those related to substance use disorders, mental health issues, racism, and homophobia.9,10,11,12,13 HIV/AIDS stigma is not limited to people known to be living with the disease, but often extends to family and friends of PLWHA, HIV service providers, and members of groups that have been heavily impacted by HIV/AIDS, such as gay and bisexual men, homeless individuals, street youth, and mentally ill individuals.

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