Managing HIV stigma: Counselling helps change Alice’s life

Since the early years of the HIV epidemic, stigma has been a major barrier to successful HIV prevention, care and treatment. Early in the epidemic’s history, the late Jonathan Mann, former head of the World Health Organization (WHO) Global Program on AIDS, identified stigma as the “third epidemic”, following the accelerating spread of HIV infection and the rise in AIDS cases.

According to a Progress Report on Global HIV/AIDS Response by WHO (2011), discrimination, blame and denial still deter people from being tested, disclosing their HIV status and taking anti-retroviral (ARV) drugs. However, unwillingness to be tested leaves more infected people undiagnosed, making treatment less effective, contributing to the spread of HIV expansion and increasing numbers of AIDS-related deaths.

The WHO emphasizes that disseminating knowledge about HIV prevention, transmission, care and psychological and social support can go a long way to offset misinformation and ignorance around the epidemic.

Alice (32) has battled stigma since 2011. She first found the courage to take charge of her situation after participating in HIV counselling sessions with Village Health Teams in Bulyango parish, Hoima district. Prior to the counselling, she was afraid to even know her HIV status. Two of Alice’s biggest concerns hinged on fear of rejection by her husband and worries about confidentiality if word spread about her HIV status.

In August that year, following the counselling sessions, Alice visited Hoima Regional Referral Hospital (RRH), where she was tested and found to be HIV-positive. Again challenged by her fear, she waited another five months before returning to Hoima RRH to be enrolled into care at the Anti-retroviral Therapy (ART) Clinic. Even then, she was not prepared to reveal her HIV status to her husband, Simon—until she learned she was pregnant.

“I could not tell my husband that I was HIV-infected because I feared he would reject me”, Alice recalled.

 Tina Atugonza, the Hoima RRH ART Clinic counsellor, says Alice’s story is one among many.

“The burden of stigma among couples is huge here. I struggled to make Alice understand that HIV is an illness she can live with, if she remains on treatment. I encouraged her to change her attitude as the first form of ‘treatment’ ”, Atugonza said.

Gripped in a flashback, Alice remembers the hard times she suffered due to her status and her husband’s reaction when told she was HIV-positive and pregnant.

“Simon was very bitter with me when I told him my status and that I was pregnant. I got little support from him during the pregnancy. I mostly persevered on the advice of the counsellor and nurses at Hoima RRH ART Clinic”, Alice added.

Due largely to the counseling and support she received at Hoima RRH, Alice continued to visit the hospital for routine HIV and antenatal care. One benefit of knowing her HIV status was being able to enrol immediately in the Prevention of Mother-to-Child Transmission (PMTCT) of HIV programme when she learned she was pregnant. Fourteen months after her diagnosis, her baby was discharged free of HIV. Nevertheless, Alice recognized that her family still faced uncertainty, as her husband remained reluctant to be tested for HIV.

According to Atugonza, Alice’s counsellor, dedicating time to understand the challenges of HIV-positive pregnant women is an important aspect of her work. She and her team try to explain the realities of HIV to women and the importance of engaging their spouses. “Dealing with HIV and AIDS is difficult, but the first step is to seek support from people who understand what you are going through. It takes time, but many of our clients manage to bring their partners to hospital for testing and counselling”, Atugonza said.

Alice was one of Atugonza’s successes: “Throughout my pregnancy, I never stopped encouraging my husband to get tested. He was very resistant, but I continued. I wanted us to understand our health and work together to raise our child”, Alice explained.

Soon after learning that their baby was HIV-negative, Simon agreed to visit Hoima ART Clinic. Tested in October 2013, with Alice at his side, Simon learned that he was also HIV-positive. At the hospital, the couple received further counselling together, and Simon agreed to enrol into HIV care at the same hospital.

Alice and Simon are now sharing a different life. They have both had to make various changes in their lifestyles due to their health, and now proactively save money for travel to Hoima ART Clinic for routine HIV care. Alice celebrates her achievement in having Simon enrol on ART, and Simon has promised to adhere to treatment in honor of the effort and courage Alice showed on his behalf and that of their new born.

The success at Hoima Regional Referral Hospital, which saw a 118% increase in the number of clients who received HIV Testing and Counselling (HTC) services between Years 2 and 3 of the project, shows the impact of SUSTAIN’s investment in institutionalizing HTC in routine healthcare at 12 public regional referral and 6 general hospitals. Since June 2010, SUSTAIN has provided training and on-site mentorships to health workers at these hospitals to scale up enrolment into HIV care. Training and mentoring on Provider-Initiated Testing and Counselling (PITC) and on couples counselling have been major components of SUSTAIN’s activities. These and other improvement activities resulted in a combined 101% increase in HTC service delivery performance at the 18 SUSTAIN hospitals over the last project year.


Written By: Bernadeta Manisula Nagita, Executive and Communications Assistant, with contributions from Jessica Ziegler, Knowledge Management Specialist – URC


This information was outstanding. I appreciate Alice and salute her for the way she run her life smoothly even in hard situations.

By Jim adams