By Phoebe Kajubi
Uganda, one of the first countries in sub-Saharan Africa to experience the devastating impact of HIV/AIDS and to take action to control the epidemic, has registered significant progress in provision of treatment and care for people living with HIV/AIDS. Currently, 7 percent of the estimated 1.6 million people living with HIV are children under 15 years old. HIV/AIDS, which previously was a death sentence, has become a manageable chronic illness due to advent of antiretroviral therapy (ART). Consequently, many children infected with HIV are reaching adolescence and adulthood.
In 2011 and 2012, I conducted a study of 394 HIV-infected children aged eight to 17 on antiretroviral treatment (ART) and their caregivers in Jinja District, Eastern Uganda. At the time of the study, there were only nine health facilities in the district that provided treatment for children infected with HIV. Some children were required to come for their antiretroviral drug refills every two weeks, but most after one month. Today there are 22 health facilities providing ART for children in Jinja District. The study explored the children’s perspectives and communication practices regarding their diagnosis/illness and treatment. This was based on existing evidence that many HIV-infected children make frequent visits to clinics and are on daily medication without knowing why they do so.
Children’s Health Condition Before ART
Interviews with the caregivers revealed that all the children were born with HIV and were started on antiretroviral treatment when they were either in critical condition or were perpetually sick and were not responding to any treatment. The majority of caregivers described their children’s health condition as appalling before initiation on ART. They explained that children had uncontrollable diarrhea and intermittent fits of vomiting; had frequent malaria or sporadic fever that wouldn’t respond to treatment; suffered from debilitating skin rashes, dry cough, or hair loss; were emaciated with sunken eyes; and in some cases had tuberculosis and herpes zoster. In an interview with the mother of a 12-year-old HIV-infected boy, she said, “My son fell very sick before he was tested for HIV and was started on medicines. He had TB and Herpes zoster. He was right away started on antiretroviral drugs. He now looks a very healthy and happy child. Whenever he becomes reluctant to take the medicines, I bring out his photographs that were taken when he was very sick and show them to him. I then encourage him to take the medicines so as not to go back to the worst state he was in before he was started on the medicines.”
All caregivers of HIV-infected children affirmed that ART had given their children a second chance at life. Mothers especially felt guilty that they had infected their children with a highly stigmatized disease that currently has no known cure. The advent of free and accessible treatment was a savior to all.
The younger children (aged eight to 12), on the other hand, did not fully comprehend the magnitude of their HIV diagnosis and the implication of being on daily medicines for life. Consequently, their adherence to ART depended on their caregivers, though during interviews with all the children, they repeatedly made statements such as, “Medicines are my life, if I don’t take medicines I will die.” Older children strongly believed that if they took their medicines as prescribed, they would study and join university, get jobs, marry, have families, and leave a legacy for their children. Some children reportedly took their medicines diligently because they did not want to be sickly or suffer from opportunistic infections that would make their peers suspect that they had HIV/AIDS.
Despite positive reports like these, older children expressed a fear of death if they did not take their medicines. They also feared being stigmatized and ostracized by their peers. Caregivers, who largely comprised single, HIV-infected mothers and elderly grandparents, pointed out the challenges encountered in taking care of the children, such as transport costs for those who lived far from the health facilities, providing basic necessities such as adequate food for the children to take with their medicines, and school requirements. The majority of the caregivers depended on subsistence farming as a source of income; consequently, taking care of HIV-infected children became an additional challenge.
National Response to the HIV/AIDS Problem
In Uganda, expanded access to antiretroviral therapy has increased the number of HIV-infected children on treatment from 5,000 children in 2006 to 56,269 in 2014, although treatment coverage for children is still lagging at 33 percent compared to 70 percent for adults.
Based on the 2014 HIV and AIDS Uganda Country Progress Report, the success of antiretroviral treatment is partly attributed to the increased number of health facilities providing these services for adults and children. Since the government of Uganda launched its program providing free, universal access to antiretroviral drugs in 2004, the number of health facilities in all 122 districts providing ART rose to 1,478 by the end of 2013 from 10 in 2001, and of the 3,028 antenatal care facilities that were providing HIV testing and counseling services, 1,976 were dispensing antiretroviral drugs by December 2014.
In addition, the country has maintained a public health approach to the provision of antiretroviral therapy. The expansion and integration of HIV/AIDS prevention, treatment, and care activities have been decentralized, with primary health care services being carried out at lower health centers, including private health facilities, in places where the majority of people living with HIV/AIDS reside.
There has been sustained expansion of the national Elimination of Mother To Child Transmission (eMTCT) program countrywide, whereby all HIV-infected mothers are initiated on ART, irrespective of their clinical stage, resulting in a drastic reduction in the number of babies born with HIV. Additionally, all HIV-infected children younger than 15 years are initiated on ART. Lastly, through the scaling up of the Early Infant Diagnosis Program, identification of infected children and initiation of ART in children have both increased. Retention in care of infected children is still a challenge, and follow-up measures need to be improved. Nevertheless, whereas caregivers of HIV-infected children had known AIDS as a fatal disease that previously involved immense suffering and ultimately death, and had taken the lives of close family members, children now had hope for living. There is a window of hope for elimination of HIV among children.
Dr. Phoebe Kajubi is a research fellow (social scientist) based at Child Health and Development Centre, School of Medicine, Makerere University, College of Health Sciences, Kampala, Uganda.
[Photo Courtesy of U.S. Mission Uganda]