Feature story

Breaking the cycle of stigma and discrimination in rural Uganda

10 September 2012

Her Royal Highness Crown Princess Mette-Marit of Norway presents the Red Ribbon Award for Stopping new HIV infections in children and keeping mothers alive, women's health to the Giramatsiko Post Test Club. XIX International AIDS Conference (AIDS 2012), Washington D.C. Credit: IAS/Ryan Rayburn

Justine, a 38-year-old Ugandan woman, tested positive for HIV during an antenatal visit at the local health centre when she was pregnant with her fourth child. After disclosing her HIV status to her husband, he left home and never came back.

She did not go through the pregnancy alone though. Justine had the support from her peers at Giramatsiko Post Test Club, a grassroots organization established in 2002 in Kabwohe, Uganda.

The organization was set up by seven women living with HIV with the aim to empower and educate their peers about HIV prevention, treatment, care and support. In addition to focusing on their health and physical well-being, Giramatisko also empowers women to understand their rights to health services.

Finding out you are HIV-positive brings physical and spiritual distress and the accompanying shame and discrimination have prevented many individuals from seeking treatment and leading a productive life

Fara Twinamatsiko, founder and chairperson of Giramatsiko

“Finding out you are HIV-positive brings physical and spiritual distress and the accompanying shame and discrimination have prevented many individuals from seeking treatment and leading a productive life,” notes Fara Twinamatsiko, a founder and chairperson of Giramatsiko.

A peer educator from Giramatsiko referred Justine to a health facility during her pregnancy where she received antiretroviral drugs to prevent HIV transmission to her child. The drugs helped ensure that Justine gave birth to a healthy, HIV-negative baby.

With a small staff and dozens of volunteers, the Giramatsiko Post Test Club currently reaches out to women in 19 centres in the Sheema district of western Uganda where they provide emotional and psychological support, HIV testing and counselling as well as referring women to health centres to access antiretroviral medicines, antenatal care and other services.

Countering stigma and discrimination

Though stories like Justine’s are not uncommon in Uganda—and in many other parts of the world—there are signs of hope as individuals and communities take action to counter HIV related stigma, discrimination and harmful social norms.

The Giramatsiko founders have confronted discrimination head-on by disclosing their own HIV status. In doing so, they have helped hundreds of other men and women in Uganda, young and old, openly discuss their experiences. They are breaking taboos and challenging the stigma associated with HIV.

“We have a very conservative attitude towards HIV in our community, but no social problem can be solved without open discussion and education,” says Tumushabe Sedrida, Coordinator at Giramatsiko.

According to the 2011 Uganda AIDS Indicator Survey, HIV prevalence in Uganda increased from 6.4% in 2004-5 to 6.7% in 2011. To-date, the HIV prevalence among women in the age group of 15-49 is 7.7% while that of men is 5.6%. Regarding pregnant women living with HIV, an estimated 53% receive services to prevent new HIV infections in their children and just 17% receive treatment for their own health. These gaps in access to HIV services emphasize the need for organizations like Giramatsiko.

Red Ribbon Award

Ten years on, Giramatsiko continues to prove that a small group of individuals can make a big difference in the lives of an entire community.

In recognition of its efforts to reduce new HIV infections in children, keep mothers alive and change community perceptions about people living with HIV, Giramatsiko received the  UNAIDS Red Ribbon Award at the XIX International AIDS Conference in July 2012. The award recognized ten organizations worldwide that have undertaken innovative and outstanding community work in the response to HIV.

Despite recent accolades, Giramatsiko’s work is far from complete. “Our aspiration is to touch many and save more lives,” notes Ms Sedrida.