The defaulter's club in Kenya is not like any other club - it is a growing movement of teenagers born with HIV who deliberately take 'holidays' from their life-saving medication.
These young people are fed up with facing stigma and discrimination and deliberately default on their daily dose of antiretroviral medication to take 'drug holidays' for anything from three days to one month. They say they do this to "see what will happen" or just because they are "tired". Through their own networks they ill-advise each other and defaulting has become a common occurrence.
According to Kenya's National AIDS and Sexually Transmitted Infections Control Program more than 13,000 children are born with HIV annually, having contracted it from their mothers. With infants and children under 15 years accounting for 16 per cent of all new HIV infections, the Kenyan government has scaled up HIV testing and counseling for pregnant women - but children who are born with the virus have been left out of programmes.
Children born with HIV
Alice* is in a boarding school and, because of the stigma associated with HIV she does not want to be identified as having the disease and does not take her medication consistently.
"My friends in school are not aware of my HIV status. I only take my antiretrovirals during school breaks and holidays and nothing has happened to me. Besides it's boring to always take medicine," she smiles cheekily, showing her dimples.
"What is the worst that can happen?" Alice asks. "I was already condemned to die even before I was born, we will all die eventually. What is the use of living a life that you can't be normal, knowing that you can die anytime, can't have a boyfriend, get married and have kids of your own?"
World Health Organization warning
According to the World Health Organization, failure to consistently adhere to treatment can lead to drug resistant strains of HIV and other health complications, limiting the effectiveness of an individual's antiretroviral therapy.
Many teenagers in the 'defaulters club' are not aware of the consequences of their ignorance and failure to adhere to treatment. They feel they were condemned to a fate not of their making, and their lives are turned upside down when they are finally told why they are taking medicines.
But when they take drug holidays the first-line regimen of antiretroviral therapy begins to fail. As a result they have to move to second-line regimen, which is not only more expensive, it is also stronger, and involves taking more pills with more food restrictions and side-effects. Even a second-line regimen can fail, if not taken consistently and correctly, so a third-line regimen may have to be used.
Ignorance and risk
The term defaulters club came about when organisations like Lean On Me, which works with girls and women who are living with HIV, started support group sessions specifically for those who were defaulting.
Maureen Murenga, coordinator of Lean on Me, says although mothers of these children are counselled and given support, they are often not equipped with the knowledge of how to tell their children about their status. As a result most parents are afraid to tell their children the reason why they are taking drugs and lie to them. When children eventually find out the reason, they go through a range of harmful emotions such as denial and self stigma. Coupled with the emotional challenges they experience during adolescence, they become rebellious and deliberately choose to default on their medication.
The Kenya Demographic and Health Survey (2008/09) shows HIV testing among pregnant women is currently at 71 per cent. Of HIV positive pregnant women, 33 per cent access family planning services, 72 per cent have access to antiretrovirals while 49 per cent of infants born to HIV positive mothers are on antiretroviral treatment.
The Kenyan government's efforts to reduce the number of babies born with HIV are commendable and vital, but it still needs to urgently address the issue of young people born with the disease. This includes adequate practical and emotional support for understanding HIV and accessing treatment, as well as education around safe sex before they become sexually active.
Murenga warns: "The government is reluctant to address a disaster that is waiting to happen. I am certain it won't be able to afford a new treatment regimen for all the teenagers who are defaulting."
*Names changed to protect identity
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