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Being Brave: Stories of Children with Drug-Resistant Tuberculosis

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March 2012 – When it comes to drug-resistant tuberculosis (DR-TB), the global community is failing to “get it right.” Millions of people around the world suffer from this dangerous, yet treatable, infectious disease. Yet, in over a decade, less than 1% of those with DR-TB have been diagnosed and treated. Children bear a disproportionate burden of this disease, and are far less likely than adults with DR-TB to have access to appropriate care.

DR-TB kills children. “When the System Fails,” the first part of this collection, offers stories of children who died from DR-TB. This usually happened because they were either diagnosed too late, or had to wait months to access therapy. This testimony to their short lives and their suffering is a warning of what awaits thousands of other children with DR-TB, unless access to quality diagnosis and treatment improves.

Children can live with DR-TB. The stories offered in the second part of this collection, “Access Saves Lives,” are all of survivors of this disease. As their stories show, they too have been brave in the face of great suffering. Some of this suffering is due to the treatment itself, which requires each child to receive daily injections and take multiple tablets for 18–24 months. Other suffering comes from the social and psychological pain the children and their families have faced as a result of DR-TB. These stories illustrate the need for better treatment strategies and support for children. They also show that children with DR-TB can be cured with timely access to care.

This collection gives voice to the children from around the world featured in it, and to the thousands more like them who face the challenges of fighting DR-TB every day. It is also a global call to action. These stories invite all of us to join children with DR-TB and their families and caregivers in the struggle for better diagnosis and treatment. It is the first step toward “getting it right” for children with TB.

TAG is a contributing organization to this report.