Childhood TB and Stigma: Conversations of Resilience in the War Against TB
An estimated 239,000 children die every year from TB. Children with TB rarely die when they receive standard treatment for the disease, but 90 percent of children who die from TB worldwide went untreated.
“To think that 650 children die from TB every day, with 80 per cent not even reaching the age of ﬁve, is heart wrenching,” said Blessi Kumar, CEO of the Global Coalition of TB Activists (GCTA) and a Union Board member, launching GCTA´s new book Childhood TB & Stigma: Conversations of Resilience in the War Against TB at the official opening press conference.
“Mothers and carers in these stories tell us of how they had to crush the tablets to give their children, or of how getting a diagnosis was a challenge as the children had to have a gastric lavage done, which was painful. It would not be wrong to say we have failed our children who are our future.”
Childhood TB & Stigma tells the powerful stories of 13 child TB survivors and their families from countries such as Ukraine, India, Mexico and The United States and the extreme challenges that they went through and eventually overcame.
Nine-year-old South African Angelina is one of the survivors featured in Child TB & Stigma. Angelina suffers from a Primary Immune deficiency. She was diagnosed with pulmonary TB when she was two years old.
“We are lucky in South Africa, TB drugs are freely available through public health care systems however it is often not adequately utilized by under resourced communities,” said Janet Grab, Angelina´s mother. “However, stigma can be universal. TB children is different from TB in adults. Angelina didn’t cough at all. When I told the principal of Angelina’s school that she had TB, she was shocked and asked me to not tell anybody about it. She was worried that the other kids would pull out of class and stop attending school.
“Being a healthcare professional myself, I could confidently address her concerns. I got a certiﬁcate from Angelina’s doctor and brought the principal material on TB for her to read, and she agreed to let Angelina come to playschool. But my heart goes out to the children and their families in more difficult circumstances who bear the brunt of an enduring stigma every day of their lives.”
The scale of the TB global health emergency was recently acknowledged by the United Nations, which held the inaugural High-Level Meeting on TB in New York last month culminating in a Political Declaration signed by world leaders committed to ending TB by 2030.
The UN Meeting highlighted the need to consider the TB crisis as a human rights issue while it focused on the need to drastically step up investment in research and development that could deliver new diagnostic tools, new drugs and a vaccine.