The 1st of June marks the International Day for Protection of Children.  It is a day to celebrate children across the globe, and as a global community recommit ourselves to providing them the safety and security to grow and thrive.  In the first instance, this also requires that the health and wellbeing of children is protected. In Tajikistan, this involves a wide range of initiatives aimed at helping to secure our children’s future.  One such aspect comes in the form of collaboration between the Ministry of Health and Médicins Sans Frontières (MSF), in a joint effort to combat pediatric tuberculosis.

Since 2014 tuberculosis (TB) has claimed more lives than HIV making it now the most deadly infectious disease in the world.  Treating TB can be a complex and lengthy process requiring various combinations of drugs. In particular, treatment of drug-resistant TB can be challenging, as patients require a more tailored approach due to different patterns of resistance against multiple anti-tuberculosis drugs.  Moreover, standard models of care require 20-24 months of treatment. Given the difficulties encountered by those undergoing treatment, health care providers are increasingly focused on achieving a more patient-centered model of care.

Comprehensive pediatric TB care in Tajikistan

Since 2011, when MSF started to work in Tajikistan, the goal has been to achieve a more patient-centered approach to TB care. More specifically, the MSF program in Dushanbe is focused on pediatric TB care.  Children remain among the most neglected patient groups: they are significantly more difficult to diagnose than adults and have unique psychosocial needs.  MSF has been working together with the Ministry of Health (MoH) and the National TB Programme (NTP) to provide care to this vulnerable group.

In the first instance, implementing a patient-centered model of care in Tajikistan can only grow from partnership. By establishing collaborative relationship overtime, the MoH and MSF have been able to initiate treatment programs for an extremely challenging patient group, facilitate the ongoing transfer of knowledge, and therefore lay the foundation for sustained impact in the future. As part of the collaborative approach to TB care, MSF and the MoH coordinate on active case finding. This involves regular visits to the households of patients who are undergoing TB treatment and screening their family members for the signs and symptoms of TB.  This important activity is also known as contact-tracing and is essential for the early case finding.

Developing a model of care that is addressing the patients’ needs is a complex process. When it comes to the tuberculosis, it involves not only being capable of early case finding, diagnosing and treating the disease, but also addressing other challenges frequently linked to it.  This ranges from addressing the nutritional and psychosocial situation of the patient through ongoing support by qualified counselors and social workers but also the early diagnosis and treatment of other chronic diseases frequently associated with TB such as HIV or diabetes. Increasingly, it means adapting treatment programs so that they can be decentralized from hospitals to ambulatory (at-home) care so that patients can receive the treatment from day one within their residence area – when and where possible.  These are some of the leading elements that make a patient centered model of care responsive, but they are not an exhaustive list. Indeed, what constitutes responsive care is ever shifting as the needs of the patient shift.

The third driver of implementing a patient-centered approach in Tajikistan is innovation. The use of innovative techniques is essential even in the earliest stages of TB care in children, as pediatric diagnostics is a significant challenge. Concerning treatment, innovations can include adoption of new drugs into the country treatment guidelines.  With the support of MSF, Tajikistan has become one of the early adopters of new drugs, reflected in the 3rd edition of MoH Pediatric TB National Guidelines. MSF also applies innovation by tailoring formulations of drugs that have been available for some time, so that they are easier for children to ingest.  This is achieved through a technique called drug compounding that involves the manual preparation of syrups that children are able to take. Finally, innovation can help make ambulatory care more feasible; MSF has recently launched a pilot for family-directly observed treatment (F-DOT), adapting the traditional DOT approach to be more flexible and more family oriented giving more trust and responsibilities of the provision of care to the direct family members of younger patients enabling those to take the treatment without need to travel to a clinic or hospital.. 

Treating the patient, not the disease

Approximately four years ago, in 2014 a girl named Anna from Dushanbe fell ill. Only months before, her grandmother had passed away from extensively drug-resistant TB (XDR TB) and Anna had most likely contracted the disease from her.  The early stages of her treatment were not very promising, and Anna would go from negative then back to positive cultures.  In this early stage, Anna was finding it a significant challenge to take her medication, because of the difficult side effects and her tuberculosis had become more resistant to medicines used in conventional treatment. With few options left, the MSF medical team suggested that she begin a treatment regimen that included bedaquiline – one of the first new TB drugs released in 50 years.  However, Anna and her family were reluctant for her to take the new drugs and only felt comfortable after seeing the good progress made by her cousin on the same drug.  This was a turning point for Anna’s case, and she said she felt hope for the first time in years; but time was running out.

The drugs that seemed to be finally making a difference were bedaquiline and imipenem: both belonging to the category of so called “add on agents”.  Bedaquiline is a new drug showing promising results, while imipenem due to difficulty of administering it is only used in cases where there are no other options left.  It can only be given by injections twice a day for minimum of 6 months. Anna experienced a range of harsh side effects, from inflammation of nerves, to joint pain, nausea, discoloration of her skin and chronic dizziness. Because of her personal situation, she could not stay in hospital and therefore needed to travel there twice a day to receive the injections.  These required securing the intravenous access for 6 months and frequent changing of the catheters to prevent the inflammation of veins.  Just as these infusions were set to end, her doctors became concerned about the difficulty in maintaining her good test results. As a result, they proposed that delamanid be added to her medications, combing it with bedaquiline. Delamanid is another of the first new drugs to be developed in almost half a century.  However, this had never been done in the country before, was not recommended by WHO due to lack of evidence about its safety and the MoH doctors were understandably very hesitant to embark on such an uncharted path.  It was only after persistent advocacy from her medical team, based on the successful outcomes these treatment combinations had in Georgia and Armenia, that they eventually agreed on the new course of treatment.

Anna was cured of extensively drug-resistant TB in November of 2017.

Sustaining impact

This story is one of many that demonstrates how, in many ways, 2017 was an exciting year for MSF in Tajikistan. MSF’s updated pediatric protocol was adopted as the 3rd edition of MOH Pediatric TB National Guidelines, two pediatric patients finished on a short course regimen for the first time, and newer more effective drugs were introduced in combinations for more patients – to name a few achievements.  While the significance of these milestones is important for MSF’s TB programs, their true value is the impact that newer, more effective treatments can have for patients like Anna.  The successful outcome of her treatment would not have been possible without our collaboration with local staff from the MoH.

On this year’s International Day for Protection of Children, it is important to consider the fundamental need of providing health and wellbeing to the children of Tajikistan.  By partnering together on this crucial health challenge, the MoH and MSF jointly work to protect the children of Tajikistan, and therefore also the future. In this instance, it has been essential to be collaborative, responsive and innovative.  By charting a path guided by these principles, collective expertise and experience can be brought together and the protection of children enhanced in significant ways.