Andrew Musoke* is one of the more than 700 HIV positive teenagers on ARVs.
But like many children born HIV positive, he has never got used to swallowing the daily pill. He often forgot due to distractions that come with the age. While missing one’s dosage is a health risk to the teenager, there was no mechanism to monitor whether he had taken or not taken his medicine, until a project in Masaka came up with a device that reports to the doctor whenever a patient takes their dosage.
SUUBI Adherence, a study project running in Masaka region, has 736 HIV positive adolescents participating in a new American study. The project has a device that looks like a mobile phone and carried all the time by the adolescents that opens up communication between the patient and their health worker.
How the device works
The device called the Wise Pill box is supplied by the study project and it is basically designed to carry pills. However, when a patient opens to pick a tablet, it electronically sends messages to the doctor.
The doctor is also able to monitor whether one has not taken their drug from the records at the doctor’s computer.
The SUUBI Adherence computer keeps a record of all the times and days when the patient took their medication which is continuously referred to by the doctors to monitor the patient’s progress.
However, sSince it is like a phone, sometimes it fails to relay the message to the SUUBI Adherence computers when the network connection is poor,” says Musoke, on some of the failings of the device. “I have been shown places in our compound where I can open it for it to send the message. If I go a little up the hill where the network is good and I open it, the messages go directly.”
Project coordinator, Jennifer Nattabi, explains that, “We monitor if the adolescents are taking their drugs and adhering to the treatment. Some of them sometimes skip the medication and we still want to see what happens. Ours is a study.
“We have to ensure there is good network connection between the user and our server and so we go out regularly to see if the network connectivity is right or if the device is in good working condition,” she says.
Nattabi adds that the Wise Pill box has a battery and reporting does not take place when it is low. Batteries have to be replaced every two months.
Launched in September 2013, SUUBI Adherence study project has participants drawn from Rakai, Lyantonde, Lwengo, Masaka, Bukomansimbi, and Kalungu districts.
Headed by Prof Fred Ssewamala of Columbia University in New York, the five-year-study-project also seeks to establish if economic empowerment for HIV positive adolescents helps them to adhere to antiretroviral therapy (ART).
The project encourages half of the participants to save money and the organisation matches their monthly savings up to Shs25,000 a month. When the adolescent or his/her caretaker deposits savings of perhaps Shs20,000 a month, SUUBI Adherence deposits an equivalent amount on the same account.
Nattabi says, if one saves for two years, they can withdraw their savings to pay fees, to start a money generating project or to settle an emergency health problem.
“I don’t believe in cash donations to orphans without them making any input,” says Prof Ssewamala. “They must appreciate that life is a struggle and that success has to be earned through hard work and careful planning. Whatever small amounts of money they get from whatever simple jobs they do, they should be able to save a little amount of it.”
Dr Apollo Kivumbi, the study coordinator adds that, “Some of the adolescents in the study are in school and others are out of school.” He says nearly all of them have financial issues ranging from school fees, inadequate food at home and failing to keep clinic appointments to refill their medication.
“All these huddles hamper their proper adherence to ART,” he noted. “This study seeks to establish if the adolescents will adhere better to ART when they are economically empowered, and have fewer financial worries.”
As he spoke, about 100 adolescents living with HIV were assembled in a hall not far from his office listening to officials from the Centenary Bank and the Diamond Trust Bank who were teaching them what it takes to open and to maintain a savings bank account.
Under Dr Kivumbi’s supervision, counsellors and health workers make home visits, carrying out the required tests and counselling services to the adolescents about living positively with their condition and avoiding risky behaviour.
*The name has been changed because he is a minor.
The study has also been working closely with the HIV/Aids support organisations in the region such as Taso and the others.
“For a long time, the fight against HIV/Aids was focused on the adult victims,” said Ivan Magala, chairperson, Quality Improvement and Research at The Aids Support Organisation(Taso) Masaka, recently.
There were always situations that presented difficulties such as discussing condom use with both groups in the same place.
Before the arrival of the SUUBI Adherence project, only four clinics attended to adolescents separately in the Masaka region. The project has helped to expand the number of adolescent clinics to 40.
“At Taso in the past, we only monitored HIV/Aids clinically which was mainly to check whether there were reduced or increased illness incidences,” Magala said. “We also carried out immunological monitoring which is the CD4 count. If the CD4 count was less than 350 we begun to provide ART treatment and if the CD4 count improved we knew the patient was adhering to the medication. However SUUBI Adherence came with a new method of monitoring, the virological monitoring, which monitors the amount of virus one has in one’s blood. They periodically take blood samples from the participants and establish the amount of virus in the samples and make recordings.”
Suubi is the Luganda word for hope and the study is named so because its ultimate aim is to restore hope among such youths. Prof Fred Ssewamala, the project head has carried out other studies among HIV orphaned children in the region since 2004.