Time for a Reality Check for Neglected Diseases

Bernard Pécoul Bernard Pécoul, Executive Director, DNDi
[February 2014]

The field of neglected disease R&D today is experiencing what could be characterized as a phase of shifting sands: after long inaction for decades, we are now experiencing both remarkable advances and rude set-backs. The innovative ideas, incentives, and R&D partnerships, such as DNDi, that emerged over the last decade are right at the nexus of these movements – of governments, industry, philanthropy, and civil society, among others – and they thus impact directly on our work. They provide a constant reality check that reminds us of just how fragile the field of not-for-profit drug development for neglected diseases is, be it in times of advances or in times of set-backs. We have to take this seriously into account and feed our reflections, debates, and efforts to secure the sustainability of the environment in which we work to solve, in the long term, the problems of millions of patients.

The WHO CEWG process involving all members states over the last decade, after long and intense debates, led to the first concrete steps, including the identification of ‘Health R&D Demonstration Projects’ to evaluate innovative incentive mechanisms such as the delinkage of R&D cost from the final price of end products, and the creation of an international ‘Global Health R&D Observatory’ under the umbrella of WHO to guide the R&D priorities in developing countries.

These steps, taken alone, certainly do not respond to the magnitude of the problem of ensuring innovation and access to health technologies for millions of people living outside the lucrative market. The process itself has been contested, and while many of us would like to have seen a more ambitious overall instrument that would offer the sustainable answer to the lack of adequate R&D for neglected diseases, we have to constructively engage in this unique global policy opportunity to change the rules of the game, with both action now and a vision for the future. The demonstration projects will have to prove their impact through innovative mechanisms providing affordable, adapted technologies to the neglected. And this can be done, as DNDi has shown in its latest policy paper explaining how alternative collaborative models can produce results for neglected patients with relatively small amounts of investment (EUR 10-40 million for an improved drug treatment, and EUR 100-150 million for an entirely new drug).

But we need to be more coordinated in advocating for global policy changes for health R&D with stronger public leadership, keeping the bigger picture in mind, not just one or two initiatives. The recent decision to halt anti-infective research by AstraZeneca points to the importance of building a solid framework and of ensuring the incentives required to maintain investment in such crucial research programmes.

Since its inception, DNDi has tried to show that there are alternative pathways to conducting R&D for neglected diseases and to delivering – in effective, efficient, and relatively rapid ways – new therapies for populations in need, but I cannot emphasize enough that these are ad hoc fixes to the systemic problems in this field. Public leadership is needed to set up the favourable environment required to support all the actors involved in control, prevention, and elimination of certain diseases. The current South African IP reform process, aiming to stimulate innovation and patient access to treatments, is a clear example of this, reminding us how vital it is that such public policy reforms remain forward-looking and explore new pathways rather than the retrograde positions they provoke.

Dr Bernard Pécoul
Executive Director, DNDi