As a medical doctor with more than a decade of experience working on HIV and AIDS in Uganda, I’m not often surprised. Yet, on a recent mission to document the stories of women and children benefiting from advancements in testing and treating HIV, I was. I was humbled by the stories of women who faced outstanding hardships and yet wanted to use their circumstances to shine light on a topic that is too often in the shadows.
“I want my story to help a young girl out there, faced with a new HIV diagnosis, to realize sooner than I did, that this is not a death sentence at all,” Kansiime Ruth, mother of two, living with HIV in rural Uganda, said. “I want her to know that in fact if she accesses treatment earlier than I did, her unborn children stand to be protected from HIV transmission.”
As she spoke, I wondered what I would do if I was in her shoes, whether I would be as brave as she is. I wondered from where she drew her conviction, her motivation, her courage.
Indeed, there are plenty of people who need to hear her story – young women in similar circumstances, as well as donors, development partners, UN agencies and governments.
In Uganda, an estimated 150,000 children (0‑19) are living with HIV, the fourth-highest number in the region; 66 per cent of children less than 15 years old are receiving treatment — a proportion well above the global estimate of just 54 per cent. The Government of Uganda, in partnership with AIDS Development partners, has committed to increasing the proportion of children in treatment to 95 per cent.
In its current state, the HIV response is furnished with evidence, innovations, and technology to prevent new infections, as well as ways to test, treat and retain. This is less true for children: they require advanced methods to detect the HIV virus in their system and, if infected, they need special medicine formulations that are both palatable and easy to swallow. If infected, children also require a committed adult caregiver to access diagnostic and treatment services.
There is good news. New machines that test and deliver same-day results as well as medications in pellet form – much easier for younger infants to swallow – are now available in Uganda and several other resource-limited countries.
UNICEF’s Uganda office, in collaboration with the Ministry of Health and other partners, documented the implementation of the above innovations. Among the many women and children living with HIV, we were able to identify a few brave souls who have and continue to positively stand out in the face of stigma: Kansiime Ruth with her two children and Hajara Kabite, also a mother of two. Kansiime Ruth told us what a difference child-friendly medicine has made for her young daughter. Hajara Kabite shared details of how her daughter just recently came back from death’s doorstep once she was diagnosed with HIV and started treatment. Both Hajara and her daughter were diagnosed with HIV and started treatment at the same time.
The women and children we documented for these stories are truly incredible. Both mothers were abandoned by their partners when they came home with HIV-positive test results; they were then forced to return to their hometowns from Kampala. While the women continue to struggle socio-economically, they find hope and strength in their health thanks to successful treatment. “I love spending time with my children. I am very happy because they are healthy,” Kansiime Ruth told us.
They hold long-term plans and ambitions to raise their children as responsible and successful citizens. They earnestly desire financial independence and prosperity for themselves, but even more so for their children. They are driven every day to meet the basic needs of their children including shelter, food, and education as these are ever-present concerns. “I want to look after my child to see her grow and see her through education,” Hajara said.
The stories of these women show that comprehensive programs need to be designed around “the individual” rather than around “issues/problems”.
In Uganda, discussions about how to design and implement programs to identify and connect young women living with HIV, and their children, to treatment, wrap-around health programs, and social services have heightened. The same young women must be linked to jobs programs, learning or training opportunities and social protection programs. At the same time, their children must be linked to birth registration, nutrition, immunization and early childhood development centres. These kinds of programs must be implemented without further delay and accelerated to scale. Only such truly comprehensive HIV programming will rebuild lives of women and their children and help them overcome vulnerabilities that expose them to HIV acquisition in the first place as well as cause further HIV transmission.
I play a role in telling these women’s stories to the world and I am optimistic that through our work they continue to thrive not only in their health but in every facet of their lives.
Esther Nyamugisa Ochora works with UNICEF and is a Medical Doctor from Uganda with an MSc in Global health and Infectious diseases from the University of Edinburgh.