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

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

5. Round table meetings I
• 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

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 Guro
Fjellanger who has Spina Bifida her selves
• Hosted by the Norwegian association for Spina Bifida and
Hydrocephalus association and Bayer

7. Participants
• National Directorate of Health
• Experts;
- Epidemiologist with specific knowledge on incidence/prevalence
of NTDs
- Gynaecology
- Paediatrics
- Medical ethics
- Social medicine

8. Agenda 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 parliament 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
• Political follow up
• - Better Scandinavian alignment
- Pan-Scandinavian meeting, Brussels June 28th
• 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, possible
• Media interviews