HIV testing, treatment and care: why are adolescents special?

RASHIDA FERRAND: Adolescents are disproportionately disadvantaged across the cascade right from diagnosis through linkage to care, treatment, and retention and care. So if we discuss testing first there are several specific barriers for accessing testing in adolescents. So there are provider specific barriers as well as client related barriers. The provider barriers would be– the most important one– would be ethico-legal constraints. There’s a requirement to get consent from guardians to be able to access HIV testing. And in the context of where most adolescents live globally, which is in Sub-Saharan Africa, consent is required in many countries up to the age of 16, or even 18. And where there is fragile guardianship or changing guardianship, accessing consent can be a considerable barrier.

Also, there is really a very low perception of risk of HIV in adolescents, particularly HIV that’s been acquired through mother to child transmission where HIV may have been acquired horizontally or through sexual transmission clearly the issue of consensual and non-consensual sexual intercourse comes in, which clearly many health care providers would find very difficult to address. And that can potentially put them off offering testing in adolescence. Also, when one considers that the actual resource competition and the priorities, the proportional number of adolescents with HIV is far smaller than that of adults. So when there are cost constraints adolescents are really often not the priority.

The language to discuss HIV is difficult for both caregivers and for providers, which can make it very difficult to offer testing. And then when one thinks of the barriers that come through for adolescents to access testing from clients, essentially guardians have a lot of competing priorities in terms of other children, income, schooling, et cetera. HIV testing their children is often not the first priority. There’s a misplaced desire to protect their children from knowing their HIV status. And also HIV testing the adolescents can often result in inadvertent disclosure of the families HIV status, which would be the mothers HIV status.

And the accompanying guilt and the difficulties in dealing with that in the family can be a real barrier to accessing testing. These particular barriers are very specific to this age group. There are specific treatment concerns that one needs to address in adolescence. The biggest issue is the disproportionately higher rates of virological failure. And there are several reasons for this. One big reason is poor adherence. We know in many other chronic diseases that adhereance tends to drop during adolescence. And HIV is, unfortunately, no exception. So the risk of virological failure is thus higher.

The other issues that might result in a higher virological failure rate are that adolescents have been on treatment, for in many cases, a very long time, likely from early childhood. And so there’s more time for failure to accrue. In addition, there is some concern that those changes by weight don’t happen as optimally as they should. And there may have been periods when children are under dosed, resulting in virological failure. So that is a real concern in adolescence. The other treatment issues that we need to be thinking about are the toxicity of antiretroviral therapy.

Adolescents have started antiretroviral therapy often in childhood at a time when the physiological systems are not mature. And they’re taking antiretroviral therapy for much longer periods than adults do. And we don’t really completely understand the long term effects that antiretroviral therapy will have in this age group. Finally, what I’d like to highlight in terms of treatment issues is the additional complications that HIV brings over and above those off opportunistic infection. So longstanding HIV in adolescence is associated with many chronic complications, like multi-system complications including chronic lung disease, cardiac disease, neurocognitive complications, chronic skin disease, and skin disease. We often focus our priorities on providing antiretroviral therapy, but have paid, to date, relatively little attention to addressing these chronic complications.

Over and above delivering antiretroviral therapy for treatment of HIV infection there are certain additional care issues that one needs to take into account. So I already alluded to adherence being a major issue in adolescence. But there are other issues such as disclosure. Disclosure is often delayed. And if it is done it’s often done sub-optimally as an abrupt one point event. And with care givers or health care providers not being able to adequately address the issues that follow a disclosure of HIV diagnosis to an adolescent.

This is a phase when adolescents are undergoing physical change and are approaching puberty and sexual debut. And the sexual health needs of adolescents are very often not addressed in the context of HIV care services.

The other huge issue that is very often neglected is mental health. There’s a very high burden of mental health conditions in adolescence. They often arise in adolescence and clearly are multi-factorial in the context of HIV infection, including dealing with the diagnosis, the stigma that they face, the emotional consequence of living with a life threatening condition, the bereavement, as well as adolescence itself. As a result of that, the mental health burden can have a huge impact on morbidity.

On top of that there are all the social and psychological aspects of addressing HIV. Many of the adolescents living with HIV are orphans– have undergone bereavement, loss of parents or loss of siblings. And that has a very big impact on their ability to address HIV infection.