amfAR, The Foundation for AIDS Research

Strengthening Community HIV Support for Children

Community advocates participate in the four-day workshop on pediatric HIV care.

In August, 14 community advocates from Cambodia, India, Indonesia, Myanmar, Nepal, and Vietnam traveled to Bangkok for four days of training on understanding and improving pediatric HIV care and treatment, organized by TREAT Asia. The attendees were each nominated by a network of people living with HIV or a TREAT Asia partner organization in their country. Most were both living with HIV and supporting children living with HIV, and two were healthcare professionals.

Children face many disadvantages in accessing quality HIV care, and HIV is now the number two cause of death among adolescents aged 10–19 globally—and the leading cause in Africa—at a time when HIV-related deaths are decreasing among all other age groups. “Too often children and adolescents do not have access to treatment properly formulated for them or healthcare that adequately addresses the complications of growing up with HIV,” says Gery Keszler, CEO of the Austrian organization AIDS LIFE, which provided funding for the workshop. “Focusing on programs for children and young adults is especially worthy for a future generation without HIV/AIDS.”

During the training, expert speakers discussed the treatments, challenges, and strategies involved in providing quality pediatric HIV care, and the participants shared their personal experiences and ideas for improving their local and national pediatric responses. “If community members are to play an active and respected role in the response, they must be informed with up-to-date information and able to speak the same language as stakeholders, particularly medical professionals,” says Chris Green, a volunteer at the Spiritia Foundation in Jakarta, who served as the lead trainer for the workshop. “Treatment education training is essential in supporting these efforts.”

Many barriers to quality care were identified and attendees expressed their concern that pediatric HIV has been neglected in their settings—reflecting the urgent need for community advocacy for improved clinical management standards. For most countries represented, the available types of antiretroviral medicines formulated for pediatric use are much more limited than those for adults, and children who develop resistance or severe side effects have few alternatives. In addition, due to poor access to the type of diagnostic testing necessary to evaluate infants born to mothers with HIV, parents often have to wait until their child is 18 months old before they can receive the same type of HIV testing used in adults, which delays treatment initiation.

The participants agreed that, while needed to raise the standard of clinical care, the recent revisions to the World Health Organization’s HIV treatment guidelines have caused confusion in the field because in many instances the previous guidelines have yet to be successfully implemented at the national level. They discussed the importance of developing coordinated support systems for facilitating disclosure to children that they have HIV. They also highlighted the need for consistent messaging to educate both people living with HIV and their healthcare providers that the risk of mother-to-child HIV transmission is less than 1% if mothers have access to proper treatment. The misperception that the transmission rate is close to 100% remains common in the region.

The training concluded with the group identifying several advocacy priorities for improving pediatric care in their respective areas. “Issues relating to children and adolescents living with HIV have taken a back seat, even among advocates for treatment access and human rights,” says Giten Khwairakpam, TREAT Asia project manager for community and policy. “The community participants acknowledged that there will be challenges in soliciting support for their efforts, but plan to continue to work together to implement change.”