Children With TB Must Not Be Neglected

Tajikistan 2013 © Wendy Marijnissen

Tuberculosis (TB) and its drug-resistant forms are a global health threat to which children are particularly vulnerable. Where the disease is endemic, TB is a major but often unrecognized cause of disease and death among children. Pediatric TB accounts for an estimated 10 to 15 percent of all TB cases in the 22 highest-burden countries. Worldwide, TB is thought to kill at least 130,000 children each year. Yet for far too long, children with TB have been neglected.

Tackling TB in Central Asia

Pediatric TB is an indicator for the current control of TB in the general population, while children with TB act as a future reservoir for the disease. This is among the reasons why new approaches to pediatric TB care should be integrated into every TB project and National TB program.

So far, diagnosing and treating children for TB are particularly difficult task, as there are no appropriate diagnostic tools and no commercially available pediatric drug formulations. 

These issues were at the core of the symposium titled "Scaling Up and Improving Access to Ambulatory and Pediatric TB Care in Central Asia and Eastern Europe," held in early December 2013 in Dushanbe and hosted jointly by Doctors Without Borders/Médecins Sans Frontières (MSF) and the Ministry of Health of Tajikistan.

More than 100 participants, including 30 Ministry of Health representatives from across Central Asia (including Tajikistan, Russian Federation, Uzbekistan, Kazakhstan, Kyrgyzstan, Georgia and Abkhazia, Armenia, and Ukraine) and Eastern Europe gathered to share experiences, challenges, and best practices for scaling up access to outpatient TB care and the diagnosis and treatment of TB in children, particularly drug-resistant TB (DR-TB), whose high infection rates across the region are a major concern.

After a first symposium in Tashkent, Uzbekistan, in 2011 and a second in Bishkek, Kyrgyzstan, in 2012, the symposium in Tajikistan represents the next step in strengthening cooperation among the main stakeholders as well as adopting, disseminating, and implementing pediatric TB guidelines across the region.

All participants at the symposium agreed on the "Dushanbe declaration," calling for the nececssary political will and committment to attain "zero TB deaths," which can only be achieved with a measurable government-led program of investment in TB services, equipment, and training.

The declaration also calls for a commitment to develop viable new regimens with new drugs that are less toxic, more effective, can be taken orally and for a shorter time period, as an important step towards tackling the disease, together with a clear will to treat patients on an outpatient basis from as early as possible as part of a patient-centred model of care. 

Children and Their Families

In Tajikistan, MSF has been running a comprehensive pediatric TB and DR-TB program since 2011, providing family-based, patient-centered care. The program has three key components: early and appropriate diagnosis, comprehensive treatment, and adherence support for children and their families, as described in the MSF report Improving Pediatric TB care in Tajikistan that was presented during the symposium. 

Wherever possible, MSF treats children and their family members as outpatients. Outpatient care helps reduce the pressure on overcrowded hospitals, where often there are no wards specifically for patients with DR-TB.

Long stays in hospital can also have a negative impact on a child’s development, while adhering to a long and burdensome course of treatment is made less difficult if a child is at home, supported by their families as well as by health staff. 

A Dozen Pills Per Day

Takhmina is 16 years old and lives in a small apartment in Dushanbe with her mother, her older sister, and her nephew. After being diagnosed with multidrug-resistant TB (MDR-TB), she was unable to attend school for eight months. Takhmina found it very hard to be out of lessons for so long, but it was made easier by the visits of Shamsia, an MSF adherence support counselor.

“When I couldn’t go to school, I was very sad and I worried a lot,” says Takhmina. “I really like going to school and I wanted to study. Shamsia helped me during this difficult time.” 

Once Takhmina was no longer contagious, Shamsia convinced the school director to allow her to return to school. Every day after school Takhmina goes to the health center to collect her drugs from a nurse. She takes 12 different pills every day; they are difficult to swallow, but Takhmina is determined to stick to her treatment.

In the afternoons she generally feels tired but has just enough energy to take a walk in the park, do her homework, and watch TV. Takhmina’s mother says that her daughter is doing very well now at school. She will take her final exams at the end of the year.

For Takhmina, the future holds hope: “After finishing my treatment, I want to become a medical doctor,” she says. “That has been my dream since childhood.” 

(Patient’s names has been changed)

MSF has been involved in the diagnosis and treatment of tuberculosis in the former Soviet Union countries for more than a decade and currently runs TB care projects in Armenia, Georgia, Kyrgyzstan, Russian Federation, Tajikistan, Ukraine, and Uzbekistan. 

13-year-old Dilbar in the new playground at the paediatric TB hospital in Dushanbe, Tajikistan. The playground was funded by MSF. For young TB patients or family members this is a very welcome distraction in the often long and difficult treatment process.
Tajikistan 2013 © Wendy Marijnissen