Applying Human Rights for the benefit of children affected by Tuberculosis (TB)

Health professionals and researchers don’t often have the opportunity to think about human rights, but they can be a valuable tool for improving the health of the populations we care for. MRC Unit The Gambia authors, Robin Basu Roy and Beate Kampmann, propose “Why the Convention on the Rights of the Child must become a guiding framework for the realization of the rights of children affected by tuberculosis” in their article co-authored with colleagues at United Nations International, Children’s Education Fund (UNICEF) and Imperial College London. The paper aims to bridge the gap between those providing paediatric TB clinical care and conducting research and those working in the fields of human rights, policy, and advocacy.

Children affected by TB face many challenges, including; consideration of their family context; the limitations of preventive, diagnostic and treatment options; paucity of paediatric-specific research; failure in implementation of interventions known to be effective; and stigma.

The article focuses on the relevance of the five core principles of the United Nations Convention on the Rights of the Child to children affected by TB:

  1. Children’s inherent right to life and states’ duties towards their survival and development
  2. Children’s right to enjoyment of the highest attainable standard of health
  3. Non-discrimination
  4. Best interests of the child
  5. Respect for the views of the child

The research highlighted areas where children’s rights are violated and how a human rights-based approach should be used as a tool to help children affected by TB, particularly in light of the 2030 Agenda for Sustainable Development and accompanying Goals. The Convention on the Rights of the Child, as a widely ratified binding legal instrument, enables us to hold States parties to account to ensure that they protect the rights of children affected by TB.

Schematic of the key concepts from the United Nations Convention on the Rights of the Child (CRC) as applied to paediatric TB with the child and family at the center. Adjacent to each concept are themes of relevance to paediatric TB linked to action points for the benefits of children affected by TB.

As health practitioners and academics, we can document and report violations of children’s human rights on individual and systems levels, and use the CRC to leverage States parties to deliver personnel, infrastructure and funding for interventions that we already know to be effective: contact tracing, preventive therapy, childhood TB training for health workers, and infection control. As a community, our advocacy strategy needs to be stronger and inclusive and to give voice to children and families directly affected by TB.

This research was enabled by Robin Basu Roy’s Clinical Research Training Fellowship, jointly funded by the UK Medical Research Council (MRC) and the UK Department for International Development (DFID) under the MRC/DFID Concordat agreement which is also part of The European & Developing Countries Clinical Trials Partnership (EDCTP2) programme supported by the European Union. Beate Kampmann is supported by MRC Program Grant MR/K011944/1andNIHR Senior Fellowship SRF-2009-02-07

Commenting on the convention Professor Beate Kampmann, Theme Leader, Vaccines and Immunity, said “It is disturbing and unacceptable that there are still at least 170 000 children (From latest figures in Global TB Report 2016) dying from TB each year, when we have effective treatment. It points to a situation where children are not regarded as a priority, and our research shows some of the societal reasons for this missed opportunity. Beyond finding better diagnostics and vaccines, the research community and society at large also need to stand up for the human rights of children affected by TB.”

According to Robindra Basu Roy, the first author, “It’s critical that those of us with expertise in childhood TB raise our voices and highlight areas where, as societies, we can serve our children better. Different disciplines, such as health and law, don’t interact meaningfully often enough. This article highlights how much we can learn from each other, and how such shared perspectives can be leveraged for the benefit of the one million children who fall ill with TB each year.”

Authors: Robindra Basu Roy, Nicola Brandt, Nicolette Moodie, Mitra Motlagh, Kumanan Rasanathan, James A. Seddon, Anne K. Detjen and Beate Kampmann