Stigma and Discrimination in Caring for HIV/AIDS Patients

1. 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

2. “ 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 don’t want to see in your eyes fear, pity, and especially hatred.”

3. 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.

4. 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

5. 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.

6. 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.

7. “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”.

8. 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.

9. 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.

10. Illustrative barriers • PLWA denied basic rights, access to care, treatment and services. • IDU’s 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’

11. 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/Ukraine’s 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

12. “I don’t like it when somebody feels sorry for me. It’s easier when nobody knows about this…

13. …I am very afraid that somebody will learn about Sasha’s sickness. When I learnt we were ill, I thought I’d go mad. I can hardly express what I feel, I am afraid of everything. I am completely at a loss what to do.

14. Should HIV positive persons be registered?

15. 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.

16. Stigma and discrimination’s 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.