An estimated 3.3 million children under 15 years of age were living with HIV worldwide in 2012. During that one year alone, some 260,000 children were infected with HIV (over 90% of these were in sub-Saharan Africa). A further 210,000 died of the disease, the vast majority before reaching the age of two and without having been diagnosed. Most of these deaths could have been avoided had diagnosis been carried out in the first weeks of infection and treatment immediately commenced. While the absolute number of infants newly infected with HIV is now declining due to international efforts made in prevention of mother to child transmission, the need for paediatric treatment will continue to increase at least until 2020.
Gloria is an HIV-positive single mother of three children, two of whom are not HIV positive. As she lost her regular job when she was diagnosed with HIV, she now sells cooked sweet potatoes in the mornings before her children wake, and does people’s laundry to support her family. Simon, her son, 21 months old, is HIV positive. [Gloria and Simon’s names have been changed and are not their real names.] Gloria and Simon live in the outskirts of Nairobi, Kenya. It is estimated that some 190’000 children are living with HIV in Kenya. Only few antiretroviral drugs are available for HIV-positive children. The current treatments combine three or four drugs which act together to suppress HIV replication. The recommended drugs for young children are comprised of a syrup that requires refrigeration, is cumbersome to carry, complicated to dose, and tastes awful; combined with a dispersible tablet. As Gloria cannot afford a refrigerator and has no electricity at home, she stores Simon’s medicines in a pail containing water and sand in order to keep it cool. The routine of Gloria giving medicine to Simon twice a day involves her first, to syringe out the correct amount of syrup. She complains of the syrup ‘clotting’, making it hard to get into the syringe. Gloria struggles every day to administer the syrup to Simon as he sometimes cries and tries to get away because of the bad taste he can hardly stand. The other two medicines for Simon come in a dispersible tablet that Gloria disperses in a small cup containing clean water. This can be also a challenge for certain households where there is no clean water readily available. Gloria administers to Simon his other two medicines. He often refuses it because he is still remembers the taste of the syrup from just before. Gloria is relieved every time the battle of giving the medicine to Simon is over, but she will have to repeat the same process in several hours. She says that it gets harder, not easier, as Simon gets older. While, technically, kids are meant to switch to pills when they grow bigger, many of them cannot swallow pills even when they are ‘technically’ old enough to do so. Simon is tended to by the FACES Programme (Family AIDS Care and Education Services) in Nairobi. Gloria and Simon go for regular check-ups at the health centre to make sure that Simon is healthy and the dosage of his treatment is adapted as he grows. Gloria refills Simon’s medicines every month because the syrup cannot be kept at room temperature for more than six weeks. She gets them for free at the health center, which means that for a full day each month, she is away from her job and her other children. For Gloria and Simon, and all families with HIV positive children, there is an urgent need to make treatments available for children, which are safer, easier to carry and store, easier to give and to take, and which will ensure their greatest chance to reach adulthood. As Gloria says, she finds the courage every day to give the medicine to Simon no matter what, because she knows that one day ‘he will be a great man’.