Mercedes C Becerra is an Associate Professor in the Department of Global Health and Social Medicine at Harvard Medical School. She is a TB specialist with Partners In Health and has worked on the implementation and evaluation of drug-resistant TB treatment programmes for over 15 years.
She, along with Dr. Soumya Swaminathan, Director of Chennai-based National Institute for Research in Tuberculosis initiated the Sentinel Project on Pediatric Drug-Resistant Tuberculosis — a virtual network of global researchers, caregivers, and advocates who share a vision of a world where no child dies from this curable disease. In an email to me, she recalls how the Sentinel Project came into being and what it has accomplished in two years’ time and what more remains to be done.
What motivated you and Dr. Soumya to start the Sentinel Project?
I met Dr. Soumya in April 2011 in Delhi, at a workshop organised by the Indian National Science Academy, the Indian Council of Medical Research [ICMR], and the U.S. Institute of Medicine. The workshop aimed to bring together researchers from India, the U.S. and elsewhere to examine the barriers to scaling up DR-TB treatment in India specifically.
Dr. Soumya and I were invited to participate in a panel focused on vulnerable populations including children. Dr. Soumya described what was known about children with DR-TB in India, and I presented data from Peru about children exposed to DR-TB. In conversations after the panel, the two of us realised that we had shared the frustrating and eye-opening experience of searching for information to give a global context for our respective presentations.
We realised that, globally despite much work being done on DR-TB, children with DR-TB were in essence invisible, and that this was itself a major barrier to advocacy for better science and improved treatment access for children specifically. The other presentations in the workshop had showed us that the very slow scale up of treatment globally for DR-TB patients was unlikely to accelerate soon.
Dr. Soumya and I thought that we should try somehow to raise the visibility of this vulnerable population specifically, and that it should also be a way to link individuals who saw themselves as stakeholders — not as representatives of their institutions, but as individual researchers, caregivers, and advocates. We considered that an aspirational focus would be to link in a virtual network such like-minded individuals around the shared vision that no child should die from DR-TB, which is a curable and preventable disease.
How easy was it to get others on board (though voluntary)?
In the months after the Delhi workshop, Dr. Soumya and I reached out to a dozen or so colleagues around the world whom we either knew personally or we had read about through their published work, and whom we knew were deeply invested in this problem and had particular expertise to share. All of them supported the idea and expressed eagerness to join such a new virtual community.
So in October 2011, at an international TB conference, Dr. Soumya and I made a public announcement that we were convening this network and invited all interested colleagues to join. Within a few weeks, we had heard from over 200 colleagues in over 20 countries. We were delighted by such a response. Clearly there is a need for individuals like ourselves to connect with others who share the desire to raise the visibility of this neglected group of children around the world, who want to share knowledge about best practices, and who want to work in collaboration across many locations.
Today, there are over 300 individuals from over 50 countries in the network. We have worked through small task forces focused on targeted projects, and through email, phone, and web-conferencing these task forces have completed several [knowledge] resources and activities that you have seen posted on our website. It is still early but the hope is that we are beginning to build a community of practice around DR-TB in children.
Did the paucity of data on childhood TB and the neglect of this vulnerable population in any way get people to come together under the Sentinel Project to address the shortcomings?
Yes indeed. The paucity of data which is obscuring the true burden of childhood TB in the world is also obscuring the burden of drug-resistant TB (DR-TB) in children. It is quite difficult to achieve a bacteriological confirmation of TB in a child, and a microbiological diagnosis of DR-TB requires further laboratory testing which means it is even more difficult to achieve. More and better data about how many children are suffering from TB and DR-TB is vital for improving estimates of the true burden of this disease.
Through the network, we hope to contribute to gathering of such data by implementing multi-site initiatives aimed both to improve access to DR-TB treatment and to improve our understanding of how many children at each location have TB disease in its different forms.
Despite publishing the field guide, what impact will it have unless a global body like the WHO recommends the policy? For instance, in the absence of guidelines by the WHO on chemoprophylaxis for children with MDR-TB infection, the India TB programme is in no mood to address the issue.
The Sentinel Project Field Guide is consistent with the WHO guidelines and numerous other global guidelines about how to manage children sick with or exposed to DR-TB. What the Field Guide does — along with the companion paper which we published in the American Journal of Respiratory and Critical Care Medicine — is to provide more details for practitioners on how to implement best practices for this group of children.
The Sentinel Project Field Guide provides extensive and detailed practical recommendations for managing children with DR-TB, and can be seen as a complementary resource for many existing guidelines.
The question about chemoprophylaxis is not addressed in the same way among several global guidelines. But the aim of the Sentinel Project has been to provide guidance on this and other challenges based on the collective expert opinion and observations of colleagues across the globe.
As more data become available related to chemoprophylaxis, we intend to disseminate these results through updated versions of the Field Guide and other resources. We hope the Field Guide and companion paper will serve as resources for national TB programmes that are seeking to update their policies on managing DR-TB in children, because our resources are based on thorough reviews of the published literature and integrated with the expertise and experience of dozens of clinicians who are caring for children with DR-TB in multiple countries.
I did not find any mention of the main areas to be focused on by researchers in different settings. I expected a section devoted to diagnostics, considering the difficulty in positively confirming MDR-TB disease in children, particularly the young ones.
You have identified one of the next priority activities we are undertaking through the network. Dr. Soumya and her junior colleagues at the NIRT in Chennai are leading a research-priority setting exercise within the Sentinel Project. They are surveying colleagues in this network to gather and integrate what these individuals see as the research questions that, if addressed, would have impact on improving access to effective treatment. We expect this research-priorities survey will be analysed and reported in 2014.
I should add, in response to your question, that the diagnosis challenges for DR-TB are almost identical to those that apply in diagnosing a child with [drug-sensitive] TB in general. As a result, we do have plans to develop resources such as video training materials to improve specimen collection, and the application of these best practices will be relevant for children suspected of any form of TB, not only to those with DR-TB.
For the same reason, I did not find any drug manufacturing company or companies working on new diagnostics in the list of members. Is it restricted to only researchers/clinicians and not others?
There is no restriction on who may join the network. I expect there are individuals who fit that category you mention. However, it is important to underline that people are joining the network as individual stakeholders, and not joining as representatives of their institutions, be they public or private. These are individuals who want to connect to others who share the stated vision.
What, according to you, is the most important contribution that has come out of this Project?
I am proud of all the work achieved so far, not only because of its high quality but because it represents entirely the work of volunteers. The most important contribution so far as I see it is that the network has connected passionate and talented people in multiple countries who would otherwise not have worked together, and linked them to produce new and valuable resources that can be shared broadly. We were each working before in our respective corners of the world, but by collaborating in this way we are now focusing on DR-TB as a global phenomenon, a threat to children everywhere.
As a result, the resources we have produced — the Field Guide and accompanying state-of-the art review, the proposed consensus research definitions, the gathering and mapping of individual stories of children from over 30 countries — all of these represent our collective vision and aspiration.
There is so much more to do to improve access to care for this especially vulnerable group of children. I feel fortunate to have met Dr. Soumya and worked with her and so many colleagues as a virtual community, and I look forward to more ambitious collective projects in the near future.
(The Correspondent is a recipient of the 2013 REACH Lilly MDR-TB Partnership National Media Fellowship for Reporting on TB.)