Stigma and Discrimination in Caring for HIV/AIDS Patients

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Stigma and Discrimination in Caring for HIV/AIDS
Patients

• Tim A. Clary
• Senior Technical and Policy Advisor for HIV/AIDS
  and Reproductive Health
• USAID Mission for Ukraine, Belarus and Moldova

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• People! I am one of the millions told that
  they are no more needed here and their death is
  just a matter of time. I am an HIV-infected ...
  And having heard this you wiped me out of your
  life. But why?! I am still here I am with you
  and who said that I would give up so easily? No!
  On the contrary! I will fight for every day,
  every hour, every minute of my life. When I meet
  you I dont want to see in your eyes fear, pity,
  and especially hatred.

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What are stigma and discrimination?

• Stigma is literally a mark or a blemish upon
  someone or something. HIV is often negatively
  viewed and social attitudes may be damaging to
  those infected or suspected of being infected.
• Discrimination is defined more in terms of legal
  and human rights. When a person loses a job
  because of the negative connotation or impression
  of HIV then overt discrimination has taken place.

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Who does stigma and discrimination affect?

• Anyone infected, affected, or potentially at risk
  for HIV (illustrative list)
• Injecting drug users
• Commercial sex workers
• HIV orphans
• Family and friends of HIV people of high-risk
  groups
• Caregivers

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Double marginalization

• For many persons in society they are not
  marginalized once, but twice. They are
  marginalized first for their HIV status and
  second for the supposed behaviors that lead them
  to become HIV.
• Thus, any program aimed at high-risk groups must
  take into account both of these types of barriers.

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Where does stigma and discrimination occur?

• Workplace
• Law enforcement
• Media
• Community
• Health care
• Religious institutions
• Etc.
• This all leads to social isolation for those
  affected.

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• Instead of calming me down, the doctors
  threaten me. After visiting Kiev, we felt hope.
  We got all information about the disease and
  understood that it did not mean the end of our
  lives, as our doctors tried to convince us.

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How do stigma and discrimination work?

• Stigma works by producing and reproducing social
  structures of power, hierarchy, class and
  exclusion by transforming difference into
  inequality. The stigma attached to HIV/AIDS is
  layered upon pre-existing stigma.
• Stigma is not unique to HIV/AIDS. It has also
  been seen associated with TB, syphilis and
  leprosy. It is seen in diseases associated with
  transgression of social norms.
• Language is crucial to stigma. Powerful
  metaphors act to reinforce and legitimize
  stigmatization. These include HIV/AIDS as death,
  horror, shame, punishment, and otherness.
• Stigma can be internal or external. Internal
  stigma (felt or imagined) is the shame associated
  with HIV/AIDS and the fear of being discriminated
  against. External stigma refers to the actual
  experiences of discrimination.

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Stigma and discrimination impacts on HIV/AIDS
programs

• They can make life unbearable for those who live
  with the disease.
• Stigma may make people who may have been exposed
  unwilling to be tested, to change their behavior,
  to reject prevention methods, and can perpetuate
  poor quality of care and discrimination.
• Example, a woman may be unwilling to bottle feed
  if she believes that it will brand her as HIV
  infected.

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Illustrative barriers

• PLWA denied basic rights, access to care,
  treatment and services.
• IDUs and sex workers are forced to register
  their status and are discriminated against.
• Sex workers face imprisonment due to the
  criminalization of their trade.
• Children in institutions cannot access services
  and are increasingly vulnerable to trafficking
  after graduation

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How to address stigma and discrimination

• Care and support also mean emotional and social
  needs for those who are affected by HIV. This
  includes visitation programs, support groups, and
  methods aimed at overcoming fears of the affected
  and society.
• IEC can include counseling, conflict resolution,
  and educational messages tailored to target
  audiences (for example, knowledgeable health care
  workers).
• USAID/Ukraines program
• Giving voice to those affected by HIV/AIDS
• Promoting a supportive environment through
  communication strategies
• Protecting the rights of those affected by
  HIV/AIDS

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• I dont like it when somebody feels sorry for
  me. Its easier when nobody knows about this

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• I am very afraid that somebody will learn about
  Sashas sickness. When I learnt we were ill, I
  thought Id go mad. I can hardly express what I
  feel, I am afraid of everything. I am completely
  at a loss what to do.

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Should HIV positive persons be registered?
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Do we wait for the epidemic to move into the
general population or for a celebrity to become
infected before addressing stigma and
discrimination?
When Elizabeth and Paul Glaser learned that their
children, Ariel and Jake, were HIV they did
everything they could to save their lives. When
Ariel died in 1988 Elizabeth turned this tragedy
into something positive by starting the Elizabeth
Glaser Pediatric AIDS Foundation. Elizabeth died
in 1994, but her inspiration is still felt in the
work of her foundation.
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Stigma and discriminations other victims

• Family, friends, caregivers
• We must not forget that caregivers need caring
  also to reduce stress and avoid burnout. This
  includes personal coping mechanisms
  (visualization, breathing exercises, prayer) and
  support groups and counseling.