Seven-month-old Mohamed Afaan’s declining weight and constant throwing up kept baffling his father Gufran Malik. The baby, a patient of multi-drug resistant tuberculosis (MDR-TB), was under the government-funded treatment regime of seven drugs daily crushed into four parts, but was barely responding to the treatment. In June, when his weight dropped to 3.5 kg, field counsellors rushed him to a private doctor. What the counsellors realised was that Afaan was being administered medicines under the government’s free Revised National Tuberculosis Control Programme (RNTCP) that his body could not handle.
From seven drugs and one Kanamysin injection, Afaan’s treatment is now down to two drugs and one syrup in private care. “I thought he will die just like his mother, but now his health is improving,” says Malik, who works at a garment store in Dongri.“What we need for tuberculosis is individualised treatment. We do not see that happening in RNTCP, especially not for paediatric cases,” says Dr Zarir Udwadia, chest physician and author of several studies on TB published in international journals.
Patients wait for Dr Udwadia in a long queue every morning at the P D Hinduja Hospital, most previously under the RNTCP. He handles nearly 500 MDR cases every year.
Across Mumbai, data also shows a rising incidence of TB, especially drug-resistant cases, among children. From 2,191 patients registered under RNTCP in 2010, the figure touched 2,365 in 2015. As many as 542 children with TB, 70 with MDR-TB and five children with the extensively drug resistant (XDR-TB) strain were registered this year until June.
Like Afaan, several children under the RNTCP need an individualised treatment protocol, something experts say the programme is too rigid for. Afaan’s six-year-old sister, an MDR-TB patient, continues treatment under RNTCP — her father’s Rs 3,000 monthly salary cannot afford private care for both. With the heavy drug regime taking a toll on her health, she skipped school for a year.
“That is a major problem. Sometimes drug side-effects are so high, adults skip work and children skip school. They miss out on so many things,” says counsellor Sagar Patra, attached with NGO Population Services International.
Under RNTCP, drug dosage is decided on four weight groups for children— from 6 to 10 kg, 11 to 17 kg, 18 to 25 kg and 26 to 30 kg — which are considered too broad for a child already sensitive to drug toxicity. “Children aged less than five years require a different drug formulation even if they gain or lose a kilogram. In RNTCP, a child weighing 6 kilo will be given the same dosage as one weighing 10 kilos,” said a paediatrician from JJ Hospital, the state’s largest government hospital.
The JJ Group of Hospitals receives over eight paediatric tuberculosis cases every month. And yet, according to hospital data, most admitted children are not enrolled under the RNTCP even in the government-run hospital. Treating doctors instead opt for drug formulation as per body weight, body side effects and reaction to certain drugs. “Unlike adults, children have varying absorption process, metabolism and greater reaction to toxicity,” said the pediatric doctor.
Last year, a seven-year-old boy was diagnosed with TB at JJ hospital. He was enrolled under the RNTCP at a local Directly-Observed Treatment Shot-course (DOTS) centre near his house. As per guidelines, he would get a heavier dose once in two days though he required a smaller dosage every single day to digest. When public holidays and later a long weekend kept the DOTS centre shut, the boy’s health worsened and he was rushed to a private doctor who changed his entire regime.
“He was brought to us in a worsened condition after three months of treatment under the RNTCP and a private clinic. That child required dosage according to his health every day. He was not getting that,” said a doctor treating the child at JJ hospital.
Issues such as these led to a joint drafting of newer guidelines for the RNTCP between the Union health ministry and the Association of Paediatrics in 2015. Recommendation to start a daily regime for TB patients, instead of thrice in a week, was made. A year after the meeting, the recommendation is to slated to start from September this year.
But a more important recommendation — to provide option of syrup-based drugs for children — has still not been implemented. According to experts, it is easier for a child to drink instead of swallowing a crushed tablet. The RNTCP tablet, even if dissolved, tastes bitter and leaves residue that may not be swallowed by the child.
The RNTCP regime also offers little scope to deviate from the listed drugs unless approved by a separate committee. In Antop Hill area, where a significant cluster of drug resistant children reside, a lot of children face drug side-effects.
Parents of a nine-year-old boy, who suffers from MDR-TB and keeps vomiting, regularly visit the local DOTS centre for a solution. The vomiting is a side-effect of ethionamide, a drug used for second line treatment.
“We have presented his case to the Drug Resistance TB Committee. Until they decide, we cannot remove ethionamide from his regime,” said a TB counsellor. The process to consider such cases takes at least two months unless brought in urgent notice of the committee.
Issues such as these have forced a lot of patients to shift from RNTCP to private doctors even if they can just about afford it. The RNTCP, already under criticism for the way it is tackling TB, is now considering a proposal to involve private pediatricians in improving diagnostic service for children in peripheral government health centres where a lack of pediatricians is faced.
“Pediatric tuberculosis is difficult to treat, specially because diagnosis takes time. But we are bringing about changes in the program to make it child friendly,” said Dr Sunil Khaparde, Deputy Director General of RNTCP.