“RETHINK FOLATE!” Working with improved NTD prevention in the Scandinavian countriesEli 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 • Scandinavian alignment • Follow up, politics and media • Dissemination of “Let us rethink folate!” new report as leverage for new political dialogueDec 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
What we have done so far• Round table meetings• Follow up with politicians• PR
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
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 todays 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 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
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