Research and access required to achieve zero deaths, new infections, and suffering

FOR IMMEDIATE RELEASE

March 21, 2013

TAG: Erica Lessem 1.212.253.7922

Sentinel Project: Mercedes Becerra 1.617.432.2114

NEW YORK, NY – Treatment Action Group (TAG), in partnership with the Sentinel Project on Pediatric Drug-Resistant Tuberculosis (Sentinel Project) released today We Can Heal: Prevention, Diagnosis, Treatment, Care, and Support: Addressing Drug-Resistant Tuberculosis in Children (https://www.treatmentactiongroup.org/tb/publications/2013/we-can-heal). This collection, released in anticipation of World TB Day on March 24, calls for urgent attention to the global problem of pediatric drug-resistant tuberculosis (DR-TB). The stories of 30 children with DR-TB in 30 countries are a testament to the need for improved programs, policies, and tools to reach the goal of zero TB deaths, new infections, and suffering.

“Children are sentinels both for recent transmission of DR-TB and for our collective response to this disease,” said Dr. Mercedes Becerra, cofounder of the Sentinel Project. “Each child’s story shows us how our current inadequate tools and practices make children with TB invisible and helps us discern how to reverse this neglect.”

For example, DR-TB killed Lebogang, a three-year-old from Botswana who did not receive effective therapy until nearly a year after his TB diagnosis. His story reveals unacceptably long lag times between diagnosis and appropriate treatment for DR-TB. Menkhu, a 15-year-old from Nepal, struggles to keep down 13 pills each day and has lost her hearing due to her medications, showing the pressing need for more tolerable TB drugs in child-friendly formulations.

In the absence of reliable data on pediatric DR-TB, these stories are critical. “We Can Heal is vital to our understanding of this global threat to children,” said Colleen Daniels, TAG’s TB/HIV Project Director. “Until adequate investments are made to gather data about the real numbers of children affected by DR-TB, these individual cases are our richest source of information.” We Can Heal also bears witness to the courage of children who fight against DR-TB, and the crucial support of family members and care providers.

Pediatric DR-TB is preventable and curable. As Sofia, a DR-TB survivor from Colombia states, “We can heal.” To get to zero child deaths from TB, however, the global community must commit long overdue political will and resources to address the gaps identified in this collection.

# # #

Treatment Action Group is an independent AIDS research and policy think tank fighting for better treatment, a vaccine, and a cure for AIDS. TAG works to ensure that all people with HIV receive lifesaving treatment, care, and information. We are science-based treatment activists working to expand and accelerate vital research and effective community engagement with research and policy institutions. TAG catalyzes open collective action by all affected communities, scientists, and policy makers to end AIDS.

The Sentinel Project on Pediatric Drug-Resistant Tuberculosis is a global partnership of researchers, caregivers, and advocates who share a vision of a world where no child dies from this curable disease. We are collaborating to raise the visibility of this vulnerable population of children, and to share evidence and resources that can increase children’s access to prompt and effective treatment. To learn more, visit: www.sentinel-project.org.