AORTIC 2011, Cairo, Egypt 30 November–2 December 2011

Developing twinning programs

Dr Carlos Rodriguez-Galindo – Dana Farber, Boston, MA, USA

I’m a paediatric oncologist and I work in Boston at Dana-Farber Children’s Hospital Cancer Center, which is part of Harvard University. I work mainly on clinical and translational research in paediatric cancer but I also work in global health initiatives trying to develop paediatric cancer programmes in countries with limited resources.

What were you talking about at AORTIC?

At this conference I talked about some of our experience developing cancer programmes in Central and South America, particularly talking about how to develop twinning programmes, twinning programmes by which a country in an academic centre in a high income setting, or a centre in a high income country, twins and partners with centres in low income countries. It’s a long road that these countries or these centres have to travel and so we go with them all the way.

Is it productive for both sides?

I think that over the years we have been able to see very successful programmes grow with the three components that are always necessary in a twinning programme, which are programme building, so developing capacity, to improve treatment and survival but also education and research. So with that I think both sides can benefit on the research component because then we all work as partners but I think that it’s also part of our mission. So academic centres have to incorporate global health programmes as part of their programmatic goals, regardless of how much benefit that brings to our academic lives; it’s part of our moral responsibility as well that should not be negotiated.

Who have you been working with?

The twinning that I worked mainly has been with the countries in Central America but there are many other examples of twinning between American institutions or European institutions or even South African institutions. So there has been, already for the last fifteen years, multiple programmes developed, for example, in our experience we have mainly twinned with centres in Mexico and Central America. I also have experience working with South America but there are other programmes in Europe as well that twin also with North Africa or with South America as well, and then in South Africa twinning with other African countries or in East Asia, Singapore twinning with the Philippines. So the point is develop this twinning, these partnerships.

So my personal experience has been with the Central American programmes where we have been developing over the last ten or twelve years national paediatric cancer programmes in each one of the countries in Central America. That is six countries in Central America plus the Dominican Republic, so that is seven countries, but they have all eventually gone in together as a co-operative group. So, because there are countries with similar needs, similar challenges, similar population, they all benefit from the experience of others and so eventually these twinnings have merged into a big twinning, if you wish, where all the countries help each other to have co-operative trials, co-operative initiatives with initiatives in nutrition, in education, in nursing. But then we have disease specific protocols and initiatives developing state-of-the-art treatment centres in one of the countries, for example for retinal blastoma, that serves as a hub for the other countries so they can train the others, so they share resources. So that has been a very successful experience, successful programmes. I would say that probably I’ve learned more from them than probably I would have been able to teach them. It’s been a partnership and we have all worked together.

What are some of the key issues with paediatric oncology in Central America?

In Central America, like in many other low-income countries, the problem is that paediatric oncology has been vastly unrecognised. So cancer is becoming an issue in those societies but paediatric cancer is still not very well known. So patients do not get diagnosed on time or get diagnosed very late, or even if they get diagnosed they don’t get referred properly, or if they get referred properly then there is lack of social support or psychosocial support to keep the patients in the system. This is not unique to Central America, probably countries with limited resources in general, but in Central America at least we have been able to build these programmes country by country so these issues have been not resolved but have improved. So we have done many education campaigns for the general public, for the paediatricians, for the teachers at the schools, so that helps with one component. Then the referral patterns, so make sure that the patients are referred to the right place at the right time and then develop the capacity within the units to be able to treat these patients properly.