Stakeholder Engagement - Europe Against Rare Cancers Project (2008-2009)

This project was initiated and coordinated by Dr. Aydin Dortok when he was working for Novartis Oncology. Dr. Dortok was a member of the organization committee and one of the task forces.

A disease is defined as rare when it has a prevalence of less than 50 per 100,000 people (EU Orphan Drug Regulation 141/2000). In the area of cancer, many tumour types, including all cancers affecting children, should be characterized as rare diseases according to this definition. This is a neglected R&D area with a very high unmet medical need with many challenges.

The goals of the project were; by engaging many key stakeholders in the EU to work together to raise awareness on the challenges/issues for rare cancers, identify solutions and make recommendations for European public policies both at the EU and national level and finalize and announce them at a conference.

With this purpose, the representatives from 3 Scientific Associations, 3 Patient Advocacy Groups and NGOs came together, set up an organisational committee, a steering committee and three task forces. All stakeholders including industry worked together in the principles of equal partnership. Some members of MAC (Members against cancer of the EU Parliament) were actively involved in the project.

Task forces continuously worked on three selected group of challenges; regulatory and methodological/scientific challenges, organizational challenges and patient access challenges and drafted recommendation papers to be discussed at the conference workshops with a broader audience.

The ESMO (European Society of Medical Oncology) organised the (as the official secretariat) conference titled ‘’Rare Tumours in Europe: Policy Challenges and Solutions’’ on Nov 6, 2008 in Brussels. Representatives of the European Institutions: such as EMEA/COMP, European Commission and industry) participated in the conference where a few were also speakers. The conference ended up with 39 recommendations to the decision and policy makers of EU. In the following days, a press conference was held at the EU Parliament to announce these recommendations. “Call to Action Against Rare Cancers” campaign was initiated following the conference in 2009 (www.rarecancer.eu).

The key importance of this project lies in its being one of the first examples in EU of the industry working as an equal partner with all other stakeholders.

Public Affairs Project - Self Monitorization of Diabetes Project with AIFD
(Research- Based Pharmaceutical Companies Association) (2011-2013)

Some critical problems occurred in 2010 with the analytical performance testing of blood glucose monitoring (BGM) systems with the entry of new players from different markets to Turkey. The reliability of these devices started to be questioned by patients as causing risk of access to safe and reliable BGM meters & strips. It was causing physicians the risk of improper, ineffective treatment and R&D based medical devices industry was faced with serious business risks.

The Diabetes Monitoring Working Group was established consisting of the representatives from three medical societies, one patient advocacy group, two diabetes NGOs, AİFD (Research- Based Pharmaceutical Companies Association ) and Dortok Communications.

The group started working to discuss and diagnose the challenges for BGM systems, develop potential solutions to improve the quality, increase the standards to a sustainable level and make recommendations to decision makers by working openly and closely with them. Critical issues for decision makers were identified as improper and ineffective treatment of diabetes causing much higher cumulative costs and increasing number of unsatisfied patients and HCPs over time leading to political pressure.

Two workshops were organized in 2011 and 2012 with the participation of all members of the group and the GOV bodies’ representatives. The first one was targeting to bring this issue to the attention of the regulators/policy and decision makers. The second one was aiming to produce solutions to be implemented by working closely with GOV bodies. Special policy and health economics analysis reports were produced with the involvement of foreign experts and in various settings these were discussed with the officials. The new qualification testing standards and methodology were identified and announced in September 2013 by MoH.

The importance of this project lies in its being the first example in the country where scientific organisations, patient advocacy groups, NGOs, Industry and the GOV institutions worked together to solve common problems, which were effecting adversely all stakeholders and the society in general. The project was developed and implemented by Dortok Communications.