Guest Post by Rebecca Hope, Nir Eyal, Justin Healy & Jacqueline Bhabha

Re: Paying for antiretroviral adherence: is it unethical when the patient is an adolescent?

With treatment, a child with HIV in sub-Saharan Africa can expect to live a healthy life. Better access to HIV treatment is contributing to a global decline in HIV deaths and new infections. Yet in adolescents, the mortality rate is rising – it increased by 30% between 2005-2012 – and HIV is now the leading cause of death among African adolescents. Globally, one in three adolescents with HIV do not take adequate therapy to suppress the HIV virus.

When antiretroviral treatment is life-saving and free, why is adherence so hard for infected adolescents? YLabs, a non-profit that designs and tests solutions to improve the health of disadvantaged youth, began working with adolescents living with HIV in Rwanda and South Africa to understand what prevents them from taking their treatment. Some of our team were involved in that work. Adolescents with HIV are navigating important transitions in their relationships, sexuality, and socio-economic roles, whilst living with a highly stigmatised condition. Lack of social support, isolation, and low mood made it hard for teens to motivate themselves to take medicines regularly. Poverty also stood in the way of regular clinic attendance. Many interviewees were more concerned about their finances than their health: one sixteen year old Rwandan girl living with HIV said: “When I’m in class thinking about how to pay school fees, I think about stopping taking my medicine and starting to try to find money.”

In addition, adolescence is often a time of risk-taking and short-term thinking, contributing to unhealthy habits. Neurodevelopmental research suggests that areas of the brain stimulated by rewards reach peak activation in adolescence, and adolescents prefer immediate, small rewards over larger gains that come later. At the same time, the development of ‘self-control’ regions, which help us make wise, considered decisions, lags far behind–a perfect neurodevelopmental storm. For many adolescents, skipping tablet-taking today, when they feel well, might be favoured over staying healthy in five years’ time. We asked, could adolescents’ increased susceptibility to rewards make short-term financial rewards a useful tool to improve long-term healthy adherence habits?

With Rwandan adolescents, YLabs designed YBank, a new approach to improve antiretroviral treatment adherence, currently being piloted in Rwanda with the Rwanda Biomedical Centre. The YBank program combines short and long-term financial incentives with peer support, access to banking and financial literacy training. But is it ethical to pay adolescents to take their medications?
Researchers from YLabs and from the Harvard TH Chan School of Public Health’s Department of Global Health and Population investigated whether it is ethical to incentivize teens to take antiretroviral therapy. Payment for antiretroviral and other medication adherence is an accepted practice for adults. Our JME paper examines three ethical concerns about incentivizing adolescents with HIV to take antiretrovirals that might be more serious for adolescents than for adults.

First, might incentives be so powerful in adolescents that they coerce or force them to take treatment against their will, undermining their independent, autonomous choice? Second, is it unfair to reward those adolescents who successfully take treatment, when some barriers to taking medication might be beyond other adolescents’ control? Finally, might giving adolescents money to take medicines ‘crowd out’ their own personal motivations to take treatment, making them less motivated to adhere once the incentive is withdrawn, and potentially foiling the formation of healthy habits and attitudes for their adult lives?

The JME paper’s conclusion is that if incentives are acceptable for adults, then they generally ought to be considered acceptable for adolescents, as long as several conditions are met, and depending on several unanswered questions. More research is needed on the consequences of incentivizing adolescents; in particular, on the voluntariness of their participation in incentive programs, on the use of the awards gained (e.g. whether friends or family appropriate funds), and on what happens after incentives are withdrawn. In our project, we’ll work closely with teens, parents, and clinic staff to understand the acceptability of financial incentives. We also hope to be able to investigate the validity of these potential ethical concerns, weighed against the potential benefits of incentives on adolescents’ health and well-being.

For more information on the YBank study: email rebecca.hope@ y-labs.org