It is estimated there are more than 5 million people sick with multi drug-resistant TB (MDR-TB) in the world today, which afflicts approximately 440,000 people each year, including children. Likewise, 35.3 million people are living with HIV out of which 3.3 million are children. Most of these children acquire the virus from their HIV-infected mothers during pregnancy, birth or breastfeeding, while poverty, weak immune systems, malnourishment, HIV, and maternal TB make children more vulnerable to getting TB from infected adults. 74, 000 children succumb to TB every year while AIDS related paediatric deaths are 230,000.
MDR-TB, which is a growing global health crisis, is defined as TB that is resistant to at least the two most powerful anti-TB drugs, isoniazid and rifampicin. Dr Soumya Swaminathan, Director of the National Institute for Research in Tuberculosis and cofounder of the Sentinel Project on Paediatric Drug-Resistant Tuberculosis, rues that, “There are no official estimates of MDR-TB in children globally or in India. However, surveys have shown the same percentage of MDR-TB in children as in newly diagnosed adults - 2.3%. This works out to a minimum of 2500-3000 children per year in India.”
Although one cannot be sure as to how many children suffer from MDR-TB, a few localized studies point out that the burden is substantial. Studies in South Africa indicate nearly 9% of childhood TB cases are drug resistant — a rate similar to adults. Another recent study done at Kokilaben Hospital in Mumbai, India found that 15 (72%) of the 21 referred children had the dreaded multidrug resistant form of the disease. Shockingly, all of them had got the infection directly from the community as no one in their immediate family had an adult relative suffering from TB. Worse, all of them had MDR-TB as the primary infection with no previous history of TB. An overwhelming majority of them (12 out of 15) were girls aged between three and 18. A teenager also tested positive for the extensively drug-resistant tuberculosis (XDR-TB).
India’s Revised National Tuberculosis Control Programme (RNTCP) Annual Report 2013 admits that ‘Though MDR-TB and XDR-TB is documented among paediatric age group, there are no estimates of the overall burden, chiefly because of diagnostic difficulties and exclusion of children in most of the drug resistance surveys.’ In Mumbai, 4% of the 3,829 MDRTB patients undergoing treatment under the RNTCP are children. In three years close to 50 children from Mumbai have been put on medication for MDR-TB.
Dr Sharma reported one peculiar case in which a woman from Punjab who had XDR-TB was sent to her along with her prematurely born baby who too had XDR-TB since birth. Unfortunately neither the mother nor the baby survived.
Diagnosing paediatric MDR-TB is very challenging. While GeneXpert represents the very latest in TB diagnostics, there is a need for new tools that use easy-to-get samples like urine or faeces. Extra pulmonary TB in children is difficult to diagnose as it needs a highly specialized level of medical expertise. In case of pulmonary TB GeneXpert relies on the child’s ability to cough up sputum —something which is not easy to do. But in the sputum induction method (which can be safely used on even 1 month old babies) patients inhale a saline solution which loosens the sputum in their lungs which is easily suctioned out and then screened with GeneXpert. These two new rapid detection methods were used to diagnose MDR-TB in Shirinmo (name changed) a 9 month old girl in Dushanbe inTajikistan. According to Dr Christoph Hoehn of Médecins Sans Frontières (MSF), “Shirinmo is the youngest patient we have diagnosed with MDR-TB.”
Sakshi was diagnosed as a primary case of MDR-TB by Dr Ashwani Khanna at Lok Nayak Hospital, Delhi and put on treatment in December 2012 when she was barely 7 months old. Dr Khanna’s team could not identify anyone with MDR-TB in her family or neighbourhood. When I met Sakshi in October 2013, she was in the continuation phase of treatment and I found her as bubbly and healthy as any other child of her age. Her mother told that, “I am handed over medicines for 4-5 days at one go in order to reduce the number of hospital visits. Now her injections have stopped and she has to take only 5 pills which we crush and give her. The doctor has asked us to give her nutritious food. When her treatment started she was just being breastfed and too young to eat anything else. So I took care of my diet. Now I give her a healthy diet.”
The ordeal for children does not end at getting diagnosed. The treatment for MDR-TB is long, difficult and unpleasant and no child-friendly and/or child-specific TB treatment options exist. Even forty years after modern anti-TB drugs were developed there are no clear treatment regimens for children. Doctors often have to crush adult tablets and estimate appropriate doses, which run the risk of over or under dosing a child. WHO has proposed a Fixed Dose Combination (FDC) -- one tablet containing all medicines—which would make TB treatment easier and more effective, especially for children.
Dr Tanu Singhal, the lead investigator of the Mumbai study, agrees that, "The situation is scarier for children as there are no drug-formulations available just for them and the few effective ones are drying up too. Drug sensitivity tests carried out during our study showed that 75% of these children were resistant to the drug regime recommended by the RNTCP. The solution clearly lies in better nutrition and hygiene and bringing down resistant TB among adults."
Meanwhile MSF have formulated a child friendly syrup at a pharmacy in Dushanbe, Tajikistan by dissolving the drugs in a flavoured liquid, which is measured into appropriate doses for babies and adolescents. Tajikistan is the first MSF project where this formulation is being used along with two other oral drugs, (plus the injections in the intensive phase), to treat children.
Fortunately, doctors say that children tolerate MDR-TB drugs quite well and better than adults —and suffer less from the common side effects, like nausea, vomiting and joint pain. They also have a low bacterial count. But it is tough for them to take injections for six months and the medication for up to two years.
According to Dr Sharma, “Repeated counselling is very important for desired treatment outcomes at every step. 33 out of 236 paediatric MDR-TB patients at our Institute reported at their first visit that they had already been prescribed single line drugs after first line drugs elsewhere, highlighting irrational drug use in our country.”
Dr Swaminathan informed that, “In India, we had a workshop in June, 2013 which made a recommendation to Central TB Division to include ‘probable MDRTB’ as a diagnostic category in children - especially those in contact with an adult with MDR-TB. This was accepted but has yet to be implemented. Unless we do this, we cannot provide better access to children under PMDT. Right now, very few children are being treated in the programme (except in Mumbai). We also need to negotiate with pharmaceutical companies to provide better formulations of 2nd line drugs for children.”
The Sentinel Project on Pediatric Drug-Resistant Tuberculosis is a global partnership of researchers, caregivers, and advocates committed to generating and disseminating knowledge and data for immediate action. They have developed a field guide of evidence-based strategies to prevent child deaths from this treatable disease.
The guide recognizes that “the term child encompasses a broad range of individuals and ages with widely different needs. A 2-year-old child requires a different approach to a 12-year-old, and the treatment of children with MDR-TB will never be a one- size- fits- all approach. In essence, children older than 12 years of age can be managed as adults, although the specific emotional needs of adolescent children and their caregivers should be considered.
The guide emphasizes that ‘children with MDR-TB require a higher caloric intake than their well counterparts because of the active metabolism associated with MDR-TB. Failure to improve nutritional status is a clear indicator that the MDR-TB may not be under control. Some programmes try to improve nutritional status by prescribing vitamins for children with MDR-TB. These vitamins can be important sources of needed micronutrients, and vitamin B6 must be given to all children receiving therapy for MDR-TB. However, too many vitamins can increase the pill burden of the child and may not be well absorbed. It is always preferable to give the child vitamins combined with calories in the form of food. Infection control is also of paramount importance in the management of MDR-TB in children. Children should be protected from becoming infected with MDR-TB in both the health facility and home setting. In most cases, as long as the child is on appropriate therapy for MDR-TB, the risk of transmitting MDR-TB is low.’
It is hoped that the forthcoming 44th Union World Conference on Lung Health in Paris and the 11th International Congress on AIDS in Asia and the Pacific in Bangkok will re-emphasize that having good health is a fundamental right of all, including children. Only 28% (562 000) of those children in need of paediatric ART actually receive it. As TB is the most opportunistic infection in people living with HIV, (killing one in four of them) it is imperative to understand the best way of treating and supporting the vulnerable population of children to achieve a TB and AIDS free world. Action taken now can safeguard the wellness of future generations.
October 2013
(The author is the Managing Editor of Citizen News Service - CNS. She is a J2J Fellow of National Press Foundation (NPF) USA and received her editing training in Singapore. She has earlier worked with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. She also co-authored and edited publications on childhood TB, childhood pneumonia, Hepatitis C Virus and HIV, violence against women and girls, and MDR-TB. Email: shobha@citizen-news.org, website: www.citizen-news.org)
