As Kouakou Brice, from the Ivory Coast, tries to come to terms with his wife Leonine’s death, he finds it hard to understand why she stopped taking her HIV medication.
“Every day I would ask her if she has taken her drugs and she would say yes. I did not know she was throwing her pills away,” he said. “When asked about my late wife’s disease, I just say it is witchcraft, as I don’t want people in my neighborhood to know about the HIV. I am afraid of what people may think if they come to learn she was HIV positive. And I am trying to protect my children who are still small.”
Leonine was just 33 in July 2013, when she started complaining of serious headaches. She would cry in pain the whole night. She lost her appetite and started vomiting, then one day she fainted and when she woke up she was unable to move her right foot.
Although Leonine’s sister Ahoua had a child to support, she gave up her job to move in with her sister to care for her. Ahoua said: “When I arrived, I could see she was very weak. I was helping her bath when I noticed she had some wounds on her privates and this made me think as I had heard women living with HIV have such wounds.”
Under pressure from her parents Leonine got tested for HIV, but she then admitted to her doctor and relatives that she and her husband already knew they were living with HIV and had both been on treatment.
While pregnant, Leonine had benefitted from HIV services which helped prevent the transmission of HIV to her baby and she gave birth to an HIV-free child. In April 2013, a few days after she delivered her son, she made the decision to stop taking her medication.
Ahoua recalls how the family felt when they learned about her sister’s disease: “We were devastated but the doctors told us she could recover. At the same time we were angry at her and her husband because they hid it from us.”
Fear of discrimination
Kouakou said: “We first tested some years ago. When I learned the results, I was shocked and I thought I would die. But treatment helped me stay healthy. Then we decided not to tell anyone about our status. We did that because we were afraid of discrimination. As long as we followed our treatment, no one would guess about it.
“Though Leonine developed some AIDS-related illnesses, we still hoped she would recover. With financial support from NGO Femmes Actives de Côte d’Ivoire, she was admitted to Treichville Teaching Hospital for three weeks. But as days passed by, she became weaker.”
Further examinations revealed Leonine’s health was also suffering because of tuberculosis, meningitis, severe anemia, and fever. She could often be heard crying out in pain and finally passed away on 18 December 2014 leaving two boys aged four and eight months.
Kouakou said: “Because of AIDS, I am a widow and two children are to live without their mother. I am 60 and my kids are still small. Am I going to live long to see them grow up? I don’t know.”
Handing out drugs to patients is not enough
Medication adherence – taking medicine exactly as prescribed – is vital to give the HIV medicines the chance to do their job. Leonine’s doctors explained that her health condition deteriorated because she had stopped her treatment.
A variety of psychosocial stressors (life events that cause stress) are involved in living with HIV, including maintaining a regimen of highly active antiretroviral therapy, and it can be difficult for people to take much-needed care of themselves.
Health care providers do not have regular contact with people living with HIV, and generally limit themselves to prescribing drugs. And community counselors who are acting as a relay between doctors and patients are sometimes too busy to be involved in a one-to-one care service including counseling and listening.
Enni, 27, a young woman living with HIV, said: “Sometimes, we are looking for a simple ear to listen. Instead we are just handed a bottle of pills. Feeling that we are listened to gives us so much courage to cope with our daily burdens. I am telling you sometimes, we feel like committing suicide. And when we are listened to and given advice, we feel strong again.”
When this kind of support is not available, people living with HIV may keep what they are going through to themselves and eventually make decisions that cost them their lives and have a devastating impact on their loved ones.
No one really knows why Leonine stopped taking her medication. But there is little doubt that more support for organisations such as Femmes Actives that provide spaces where people living with HIV can freely discuss their lives and what they are going through are vital to avoid further preventable deaths.