Families fighting TB - stories from Uganda

Enoch is a lively four year old boy - yet he does not speak. He lives in the small Kasangati community in Uganda, a few miles from Kampala, with his grandmother, Elizabeth. She tells his story to a group of international journalists who are on a Union-organised press trip to see first-hand the effects of child tuberculosis (TB) and what is being done to find and treat cases.

She says, “Enoch had been coughing since he was eight months old. I did wonder if it was TB so I wouldn’t let him mix with other children – I’d pull him away.”  Elizabeth didn’t get him tested because of her worries about what people might think. She tried to get pills from the drug shop to help. But Enoch grew visibly weaker, he literally had no voice, and nothing seemed to be working.

When his teachers insisted she take him out of school, Elizabeth visited a health centre in Nsagi, near Kampala, where The Union operates a programme focusing on the detection and treatment of TB. Enoch was finally diagnosed with TB in March 2018 – after coughing for over two and a half years. One month after his diagnosis, on the right treatment, he is no longer coughing, he has put on weight and sleeps well. Elizabeth says, “It is so good to see him back in school.” She is hopeful that, in time, he may yet start to speak.

Elizabeth and Enoch’s story are not uncommon in Uganda, where the detection and treatment of child TB is a major issue. John Paul Dongo is The Union’s Country Office Director in Uganda and a former project manager of the DETECT Child TB Project – he is well versed in the scale of the challenge. "In Uganda there are roughly 40,000 to 42,000 TB patients annually, but children are only nine percent of the total number of people diagnosed.” That the percentage is so low sounds like good news but the problem is that, based on studies and global statistics, in Uganda child TB would be expected to be at least 17 percent of the total, according to Dongo. That’s too many potentially ill children that are undetected, leaving them untreated and severely at risk.

Globally, the World Health Organization estimates that one million children under 15 years of age contracted TB in 2016 worldwide. Of these, one in four died, and 90 percent of those that died did not receive treatment. In Uganda, as in other countries, child TB is a silent but deadly epidemic.

Gertrude and her son Galiwango also live in Kasangati. Gertrude’s husband tested positive for TB. She doesn’t live with him but they come into frequent contact. She has been told to get tested too but, because she isn’t presenting symptoms, she is reluctant to do so. She tells the journalists on their visit that she feels well so why would she get tested and make people talk? Galiwango is on treatment for TB after being diagnosed in January 2018. “I knew something was wrong and I knew about TB of course, but I didn’t know that children can get TB. I should have realised because his symptoms were like his father’s. He had no appetite, he was listless, and at three years old, he was only 10 kilos.” Now his cough has gone, he is eating well and is back in school.

Some of the reasons for the low detection of TB in children include lack of knowledge, skills and confidence to diagnose TB in children among health workers. The commonest specimen examined to detect TB (sputum) is difficult to obtain from children especially those below five years; even if sputum is obtained, the most common tests used for examination of sputum (smear microscopy and MTB/Rif Xpert) are frequently negative. Most health facilities do not have X-rays which are helpful in the diagnosis of TB in children. Or they have machines that are subject to breakdown or frequent power cuts.

The Union’s DETECT Child TB Project was a two-year pilot, designed to counter these challenges and strengthen district and community level health care delivery in two districts in Kampala. The Union Uganda Office has now developed complementary services to improve child TB case finding, treatment and prevention. These include working closely with Mengo Hospital’s Department for Expectant Mothers to screen pregnant women living with HIV for TB. The project has been operational since September 2017. In that time, The Union has screened approximately 5,500 expectant mothers (c. 1,000 per month up to April 2018). The screening includes follow-ups with the mothers up to six weeks after delivery of their babies to prevent infection being passed to the infants.

The Union Uganda Office has also been pivotal in training and resourcing village health teams (VHTs). Well-known in the community, they visit patients in their homes, follow up on adherence to treatment and screen patients for potential TB symptoms. The VHTs are critical to a relatively new innovation which is the treating and tracking people with TB via smartphone and online. VHT workers like Daniel Kasule input data via their phones which is immediately stored in a centralised record-keeping system. In short, real-time updates that everyone can access.

Daniel says, “Some people hide from us when we visit or block our path. They are scared of what our visit means and how it will be seen by their friends and neighbours. Many clients are in denial. In one home, a child had TB but there were three other children in the house. The parents wouldn’t let us in because they didn’t want people to know that there was TB in the home.”

Stigma and fear of discrimination remain a very real obstacle to TB case finding and treatment. Abdul lives in Nabbingo in Kampala District. He recently tested positive for TB and is currently undergoing treatment. The Union’s invited media visited him at his home – a house with two rooms and no windows. Cooking is either done outside under an awning or inside – though there is no ventilation. He tells them his home is his prison and he is reluctant to go out, because people point at him or turn their backs. He knows that the stigma of TB affects not just him but his family too. He is worried about what people think. He has five young children who he sees regularly, but they have not been tested for TB. He doesn’t believe TB affects children. His youngest child has been coughing for months and has been sent home from school, but Abdul has bought pills from a drug shop that he hopes will help. He says, “It’s just a cough, I know it will be better soon.”

To demonstrate first-hand some of these issues, this week The Union is working with the Global TB Caucus to host a delegation of parliamentarians to Uganda to see the projects and meet the people who are working to counter the effects of child TB.  In what is a critical year for the future response to child TB, we hope their experiences will inform the first ever United Nations High-Level Meeting on TB that takes place on 26 September in New York, which will gather world leaders to declare a new agenda for ending TB. Child TB experts and organisations from around the world are calling on heads of state and government to make concrete commitments to children, including the recognition that child TB is seen as an epidemic in its own right, with children having access to treatment and care and preventive therapies just like adults. To end TB, world leaders must end the neglect of children with TB. Children like Enoch and Galiwango are depending on it.

FACTS ON CHILD TB:

  • TB is one of the top ten killers of children and infants worldwide.
  • Globally an estimated one million children fall sick to TB annually
  • Without treatment, 22 percent of children with TB under 15 years of age and 44 percent of children under five will die.
  • 99 percent of children with TB who receive treatment survive.
  • Young children are particularly at risk of developing severe, often fatal or lifelong disabling forms of TB.
  • If children are living with HIV, they are 20-30 times more likely to develop TB, than children who are not infected with HIV.

Find out more from Silent Epidemic - A call to action against child TB

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