The document outlines a campaign aimed at improving prevention strategies for neural tube defects (NTDs) in Scandinavian countries through rethinking current folate policies. It details actions taken, including round table meetings with health authorities, scientific communities, and politicians, and emphasizes the need for renewed political dialogue and awareness campaigns. The initiative seeks to establish accountability among government bodies to implement national policies that effectively prevent NTDs through folate supplementation.

1. “ RETHINK FOLATE!” Working with improved NTD prevention in the Scandinavian countries Eli D Skattebu, Norwegian association for Spina Bifida and Hydrocephalus and Kim Hannisdal Bayer Healthcare Pharmaceuticals

2. Aim and target groups Objective Establish consensus among influential scientists, health- and nutritional authorities and politicians that; Current folate strategies are not working The problem with NTDs persist We must consider new solutions for medical and ethical reasons Action based on new understanding Primary target groups Health authorities, scientific and clinical community, and political environment

3. Timeline “ Let us rethink folate!” Dec 2009 – Jan 2010 Round table meetings with: KOLs Health authorities User organizations Follow up with politicians and the media Scandinavian alignment Follow up, politics and media Dissemination of new report as leverage for new political dialogue Jan 2010 – Aug 2011 Dec 2009 – Jan 2010

4. What we have done so far Round table meetings Follow up with politicians PR

5. Purpose: Ascribe responsibility to the appropriate governmental body to renew and implement a national policy for prevention of NTDs by folate Platform for political initiatives aiming to: Political pressure for a new or strengthened policy Budget coverage for new information campaigns Round table meetings I

6. Round table meetings II Meeting over four hours with the most relevant authorities and the experts in the field Brief lectures from experts and authority representatives in an order leading to a discussion on future policy and responsibilities for this Moderated by the former Minister of the Environment, a member of the Norwegian association Hosted by the Norwegian association for Spina Bifida and Hydrocephalus association and Bayer Healthcare

7. Participants National Directorate of Health Experts; Epidemiologist with specific knowledge on incidence/prevalence of NTDs (if possible, national EUROCAT representative) Gynaecology Paediatrics Medical ethics Social medicine

8. Program in brief Welcome Situation report: Incidence and prevalence of NTDs Medical, social and ethical implications of today's practice for prevention Experiences from existing prevention strategies Possible measures to be considered Next steps and who will be responsible Wrap up

9. Political follow up Contact with Health Ministers and the Standing Committees for Health in the national parliaments for meetings on; The need for new policy The need for political pressure on the authorities responsible The need for a new, state financed public campaign on folate supplement in next year’s budget

10. Media coverage so far I 2010: Chronicle by Spina Bifida and Bayer on Rare Disease day in Norway. NTDs can be prevented with folate Current strategies are not working We will initiate a new dialogue on improving prevention strategies with experts and authorities Article after the round table meeting and before political meetings: Special focus on ethical challenges by secondary prophylaxis Concluding with Spina Bifidas expectations on a policy change and a public campaign.

11. Media coverage 2010

13. Media coverage so far II 2011: Editorial in the Journal for the Norwegian Doctors’ Association, January NTDs can be prevented Prevention potential by folate is not fully utilized New initiatives, e.g. awareness campaigns, are needed TV coverage two consecutive days, April Abortions as a secondary prevention strategy is unacceptable Need for better awareness campaigns

15. Next steps Better Scandinavian alignment Pan-Scandinavian meeting, Brussels June 28th Political follow up in all three countries Political contacts in Sweden and Denmark Media follow up in Sweden and Denmark Dissemination of the second report on NTDs in Europe Scandinavian “Road show” with IFs President Pierre Mertens Seminars with health committees in the parliaments Meetings with health ministers, where possible Media interviews