rethink folate 28.6.2011
TRANSCRIPT
“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
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
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
• Scandinavianalignment
• Follow up, politicsand media
• Dissemination ofnew report as leveragefor new political dialogue
Jan 2010 – Aug 2011Dec 2009 – Jan 2010
What we have done so far
• Round table meetings
• Follow up with politicians
• PR
• 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
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
Participants
• National Directorate of Health
• Experts;
- Epidemiologist with specific knowledge on incidence/prevalence of NTDs
- Gynaecology
- Paediatrics
- Medical ethics
- Social medicine
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
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
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.
Media coverage 2010
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
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