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Stories on HIV-related Stigma

December 1, 2015

28 yrs after the first drug against HIV was introduced,  more people are dying from the stigma associated with being diagnosed HIV+. These people are increasingly marginalized, not only from society, but from the services they need to protect themselves from HIV .  Stigma leads to loneliness and depression which turn further affect negatively the immune system.

Research by the International Centre for Research on Women (ICRW) found the possible consequences of HIV-related stigma to be:

  • loss of income and livelihood
  • loss of marriage and childbearing options
  • poor care within the health sector
  • withdrawal of care-giving in the home
  • loss of hope and feelings of worthlessness
  • loss of reputation
These stories from around the world, ranging from social, work/employment, travel, health care and travel stigma all say one thing: stigma against HIV is global and its consequences leads to both emotional and physical deterioration.
  • In Somalia, most people associate HIV with infidelity, to the extent that some people living with HIV travel to neighboring countries to receive treatment in an effort to hide their condition. Despite government backed TV and radio campaigns to encourage conversation about HIV, stigma continues, and accessing treatment remains difficult for people living with HIV.2
  •  Woman in Vietnam:”I am afraid of giving my disease to my family members, especially my youngest brother who is so small. It would be so pitiful if he got the disease. I am aware that I have the disease so I do not touch him. I talk with him only. I don’t hold him in my arms now.”1
  • South Africa: In December 1998, Gugu Dhlamini was stoned and beaten to death by neighbors in her township near Durban, after speaking openly on World AIDS Day about her HIV status.3

  • India, Indonesia, the Philippines and Thailand: studies by the WHO found that 34% of respondents reported that their status was told to a third person through health workers.4  Stigma prevents many people from being honest to healthcare workers when they seek medical help.
  • HIV-positive woman in the UK:  “It is always in the back of your mind, if I get a job, should I tell my employer about my HIV status? There is a fear of how they will react to it. It may cost you your job, it may make you so uncomfortable it changes relationships. Yet you would want to be able to explain about why you are absent, and going to the doctors.” 5 Fear of an employer’s reaction can cause a person living with HIV anxiety.
  • The Chinese government enforces a compulsory HIV test for anyone applying for a study/work visa longer than six months.6
  • Holland: A  survey of Dutch people living with HIV found that stigma in families included avoidance, exaggerated kindness and being told to conceal one’s status. These  actively contributed to psychological distress.7
  • Ethiopian man: “HIV might be transmitted through breathing, we do not know. So being careful is necessary: avoiding eating food coming from the patient’s home, not sharing clothes and not drinking with the glass that the patient used. This is what I think. .1 Such false claims are based on ignorance and lead to stigma. Read the facts on HIV here.
  • Wife of a person living with HIV and AIDS in Vietnam: “People are also afraid whenever a person living with HIV cooks or cleans the rice…. During meals, they also fear sharing things. The family is so fearful. Of course, the family does love him, but.. “1
  • Man, Zambia: “At the market, if they find the fellow marketer has HIV/AIDS, they start isolating themselves from that person… if it is the customer who is sick… even when this person comes to buy, they fear they can contract the disease, so they start hiding when they see this person.” 1
  • Woman Ethiopia: “Some people in this community believe that HIV/AIDS transmits through kissing, shaking hands, sleeping together in the same room and eating together with an infected person. Due to this they isolate the person from the community. For example, if they see him passing the same way they are passing, they change their way not to kiss and shake hands with him… because they are assuming that it is transmitted through breath, shaking hands, eating together with an infected person.” 1
  •  Woman with HIV, Tanzania:”I cook buns and fry fish and groundnuts for sale; nobody will buy my fish if I am infected with HIV. They will say: “What if she bent and the sweat dropped onto the frying pan?”…People say: “She may have dropped sweat there; she may have scratched herself then touched the fish.” People will not buy the fish…1
  •  HIV-positive people in Papua New Guinea were buried alive, Margaret Marabe, who spent five months working on an HIV/Aids awareness programme in the remote Southern Highlands claimed 2011.Ms Marabe told Agence France-Presse that one of the five people whom she saw being buried alive was her cousin. “I said, ‘Why are they doing that?’ And they said, ‘If we let them live, stay in the same house, eat together and use or share utensils, we will contract the disease and we too might die’.”  8
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Photo: ref (1)

  • A global study found that 35% of participants feared losing family and friends if they disclosde their HIV status.1
  • As of September 2015, 35 countries have laws that restrict the entry, stay and residence of people living with HIV. Lithuania became the most recent country to remove such restrictions.9

Awareness and education of lay persons and professionals is needed to fight against HIV-related Stigma.

 

Sources:
1.a. b. c. ICRW (2005), ‘HIV-related stigma across contexts: common at its core‘
2.Hamza Mohamed – Aljazeera (2013) ‘Stigma impedes HIV treatment in Somalia’
3. AIDS Foundation of South Africa (2013, 24 May) ‘‘I returned to the community where my mother was killed, to educate them about HIV’‘
4. WHO (2008) ‘Towards Universal Access: Scaling up priority HIV/AIDS interventions in the health sector: Progress report 2008‘
5. a. b. Stigma Research (2004) ‘Outsider status: Stigma and discrimination experienced by Gay men and African people with HIV’
6. HIV Travel, ‘China – Regulations on Entry, Stay and Residence for PLHIV’
7. Stutterheim SE et al (2009, 13th November) ‘HIV-related stigma and psychological distress: the harmful effects of specific stigma manifestations in various social settings’ AIDS 23:17
8.http://www.independent.co.uk/news/world/asia/aids-victims-buried-alive-in-papua-new-guinea-5335009.html
9.UNAIDS (2015, September) ‘Lithuania confirms no restrictions on entry, stay and residence for people living with HIV‘

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