Experts call for better Paediatric DR-TB care through child-friendly drugs and policy support

FILE PHOTO: Clinical lead Doctor Al Story points to an x-ray showing a pair of lungs infected with TB (tuberculosis) during an interview with Reuters on board the mobile X-ray unit screening for TB in Ladbroke Grove in London January 27, 2014. REUTERS/Luke MacGregor/File Photo
| Photo Credit: Luke MacGregor

At 16, Sonam from Banaras was diagnosed with pre-extensively drug-resistant tuberculosis (pre-XDR TB), a severe form of the disease requiring intensive treatment. The diagnosis was devastating, and her father’s death from TB added to her trauma, leading her to abandon treatment temporarily. When she resumed medication, her 14-year-old brother, Shiva, was diagnosed with TB. His illness went undetected until it was too late, and he passed away soon after. Now 19, Sonam has completed treatment but continues to struggle with education and normalcy. Her story reflects the challenges faced by many children with drug-resistant TB (DR-TB) in India.  

Recent findings published in The Lancet analysed 23,369 cases across 42 studies, focusing on children and adolescents with multidrug-resistant (MDR) and rifampicin-resistant (RR) TB in high-burden countries like India and South Africa.

India accounts for 26% of the global TB burden, according to the India TB Report 2024, with paediatric cases making up 5–7% of notified cases under National Tuberculosis Elimination Programme (NTEP) well below the expected 10–12%, pointing to possible under-reporting. 

The study revealed that while 72% of children successfully completed treatment, the mortality rate remained high at 12.2%. Additionally, 12.7% were lost to follow-up due to the prolonged nature of treatment, and 3.1% experienced treatment failure.

The findings also highlighted that children receiving two or more of World Health Organization (WHO) recommended Group A drugs — such as bedaquiline, moxifloxacin, levofloxacin, and linezolid — had a much higher chance of treatment success.

Barriers to early diagnosis and treatment 

Diagnosing paediatric DR-TB remains a significant challenge. Unlike adults, children often show non-specific symptoms, leading to delayed detection. According to Swathi Krishna, a TB researcher and public health physician based in Pune, paediatric TB is frequently extrapulmonary, affecting the lymph nodes and other organs, rather than the lungs. “Children cannot easily produce sputum, which is essential for TB diagnosis. We rely on gastric aspiration, but many healthcare workers are either unaware of this method or hesitant to perform it,” she explains.  

Paediatric DR-TB also reflects the overall TB burden in adults. “TB elimination programmes must include all groups without delays — this is a public health emergency,” says Varinder Singh, Director, National Centre of Excellence (NCOE) for Paediatric Tuberculosis, Lady Hardinge Medical College, New Delhi. He stresses the need for fast-tracked access to treatment, multiple expert groups per district to approve better regimens, and uninterrupted drug supplies. A centralised live dashboard with a grievance redressal system, he suggests, could improve transparency and efficiency.  

While India has separate guidelines for paediatric TB, implementation gaps persist. Many private practitioners suspecting DR-TB in children lack access to diagnostic facilities, causing treatment delays. “A paediatrician may suspect TB, but without proper testing tools, the child is referred elsewhere, creating another barrier,” Dr. Singh explains.  

Gaps in policy execution 

The National TB Elimination Programme (NTEP) introduced revised paediatric TB management guidelines in 2022 to address these gaps. The guidelines emphasise early case detection, advanced molecular diagnostics, and integrating private healthcare providers into the national framework. They also recommend decentralised treatment at community health centres and the use of child-friendly formulations, such as dispersible tablets, to improve adherence.  

Another key concern is treatment adherence. With paediatric TB treatment lasting 12 to 24 months, young patients often struggle to complete their regimen. “Ensuring a stable drug supply is critical, alongside a balanced diet. But so is addressing the stigma that surrounds TB, particularly in children,” says Sangeeta Sharma, Chief Incharge, National Centre of Excellence Pediatric TB-DRTB, National Institute of Tuberculosis and Respiratory Diseases, New Delhi.  “Stigma often comes not just from society, but from within families too, making it harder for children to seek support.”  

Expert recommendations 

According to experts, urgent interventions are required to improve paediatric DR-TB care in India. They recommend proactive case detection through community screenings in high-burden areas and expanding access to molecular diagnostic tools at primary healthcare centres to reduce diagnostic delays. Treatment accessibility must be strengthened by ensuring uninterrupted availability of WHO-recommended medications, particularly child-friendly formulations. Greater integration of private healthcare providers into the NTEP will help streamline referrals and reduce treatment delays.  

Lastly, psychosocial support, including counselling and educational assistance, is crucial to helping paediatric TB patients reintegrate into normal life post-treatment.