The OECD High Level Forum to be held in the Netherlands on June 20 and 21, proposes to discuss new policy strategies to stimulate innovation for and access to medicines for neglected diseases. The meeting has on its face very laudable goals. But while NGOs have been invited to the HLF, they have not been given sufficient opportunity to contribute to the discussion Only one NGO has been invited to speak. By contrast other actors from academia and industry have been given multiple opportunities to present their views.
Assuming NGOs have been invited because we have played a pivotal role in raising the political profile of neglected diseases through access campaigns, advancing new policy mechanisms, such as prize funds, and delivering care to the populations who form the focus of the discussions, it is surprising that we are being given such limited opportunity to speak, other than the possibility of asking questions from the floor.
Keynote speakers from WHO and health and development ministries know better than most that the crisis facing the populations suffering from neglected diseases would be far worse, but for our interventions (insufficient as they are), and the political spur we have delivered to compel others to act. Indeed, it is as a result of this knowledge that they and all WHO member states called for our involvement in the recently established WHO IGWG, as experts, and as NGOs in official relations with the WHO.
The outcomes of the HLF are meant to feed back into the work of the WHO IGWG. These results will have less credibility if it is perceived that one section of stakeholders is severely restricted from formal participation. Participation does not mean just being in the room, it requires the ability to present one’s viewpoint, rather than being restricted to asking limited questions in a debate framed and presented by others. It is difficult to say if this exclusion is intended as a slap in the face, or if it reflects a lack of integration between the work of the OECD and the work that has proceeded over years at the WHO and elsewhere, often led by NGOs, with great effect, in the area of access and innovation. Whatever the case, the result is a shabby thing…