Photo courtesy of Kevin Tachman/TREAT Asia
The needAnnette Sohn1
Children have consistently faced greater disadvantages with regard to the availability of antiretroviral therapy (ART) regimens that can be dosed and delivered to newborns and young children, and that are safe to use during growth and development. In the Asia-Pacific region in particular, access to appropriate ART and prevention of new HIV infections among children lag behind global averages. UNAIDS data found that 180,000 children and adolescents were living with HIV in the Asia-Pacific in 2010, but only 39% of children in need of ART actually receive it.[i]Underperformance of regional HIV programmes has dire consequences for future generations of HIV-affected and HIV-infected children.
When we set out on this initiative, we recognised that part of the problem stemmed from significant gaps in research, which meant that there was a lack of evidence to inform clinicians about the best treatments for children with HIV and to guide them on how to treat their paediatric patients over the long-term.
Another need related to data pertaining to drug-resistance and treatment failure. We knew from examining our database that 20% of children in the TREAT Asia network had failed their first ART regimen. Years of caring for children and adolescents had taught us that children fail because they are not getting the most potent medicines at the right doses, or they cannot adhere to their treatment because medicines are too hard to take, or come with serious side effects, or their social situations are too unstable. We knew that treatment failure was an issue, and we had a good sense of why, but we needed to assess the longer term consequences of treatment failure and to gather information to inform optimal ART regimen sequencing for these children over time.
Compounding these problems was that, while there was a need for more information, research capacity is not always strong within the region. We work with a network of clinical centres and paediatricians who are working very hard to take care of their patients, with little to no time set aside for research or reviewing data. So, we had to help build research capacity in order to address the issue holistically. Lastly, we found a vacuum in the region when it came to higher-level clinical and psychosocial training for paediatric HIV providers. Put all of this together and it left paediatricians in the region underprepared to care for their patients as they grew up with HIV.