Workshop 7 - "Folic acid prevents neural tubes defect"


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Workshop 7 - Brainstorming & Policy Development session: Prevention
"Folic acid prevents neural tubes defect"
Mrs Eli Skattebu, Norwegian Association for Spina Bifida and Hydrocephalus (RHF)"
Kim Hannisdal, BayerAB, Sweden

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  • Global Market Access Meeting, Berlin, 23-02-2011
  • Global Market Access Meeting, Berlin, 23-02-2011 Activities aimed at making it clear that we are at the dead end of all efforts so far in administering folate for preventing NTDs, and that we need to consider new solutions.
  • Global Market Access Meeting, Berlin, 23-02-2011
  • Global Market Access Meeting, Berlin, 23-02-2011 Norway, a former minister for the environment, in Denmark, a former representative in the parliament and profiled politician, in Sweden a well known doctor used as advisor to authorities and the government. No media and no politicians present in order to create an open and trustful atmosphere
  • Workshop 7 - "Folic acid prevents neural tubes defect"

    1. 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. 2. Aim and target groups <ul><li>Objective </li></ul><ul><ul><li>Establish consensus among influential scientists, health- and nutritional authorities and politicians that; </li></ul></ul><ul><ul><ul><li>Current folate strategies are not working </li></ul></ul></ul><ul><ul><ul><li>The problem with NTDs persist </li></ul></ul></ul><ul><ul><ul><li>We must consider new solutions for medical and ethical reasons </li></ul></ul></ul><ul><ul><ul><li>Action based on new understanding </li></ul></ul></ul><ul><li>Primary target groups </li></ul><ul><ul><li>Health authorities, scientific and clinical community, and political environment </li></ul></ul>
    3. 3. Timeline “ Let us rethink folate!” Dec 2009 – Jan 2010 <ul><li>Round table meetings with: </li></ul><ul><ul><li>KOLs </li></ul></ul><ul><ul><li>Health authorities </li></ul></ul><ul><ul><li>User organizations </li></ul></ul><ul><li>Follow up with politicians and the media </li></ul><ul><li>Scandinavian alignment </li></ul><ul><li>Follow up, politics and media </li></ul><ul><li>Dissemination of new report as leverage for new political dialogue </li></ul>Jan 2010 – Aug 2011 Dec 2009 – Jan 2010
    4. 4. What we have done so far <ul><li>Round table meetings </li></ul><ul><li>Follow up with politicians </li></ul><ul><li>PR </li></ul>
    5. 5. <ul><li>Purpose: </li></ul><ul><ul><li>Ascribe responsibility to the appropriate governmental body to renew and implement a national policy for prevention of NTDs by folate </li></ul></ul><ul><ul><li>Platform for political initiatives aiming to: </li></ul></ul><ul><ul><ul><li>Political pressure for a new or strengthened policy </li></ul></ul></ul><ul><ul><ul><li>Budget coverage for new information campaigns </li></ul></ul></ul>Round table meetings I
    6. 6. Round table meetings II <ul><li>Meeting over four hours with the most relevant authorities and the experts in the field </li></ul><ul><li>Brief lectures from experts and authority representatives in an order leading to a discussion on future policy and responsibilities for this </li></ul><ul><li>Moderated by the former Minister of the Environment, a member of the Norwegian association </li></ul><ul><li>Hosted by the Norwegian association for Spina Bifida and Hydrocephalus association and Bayer Healthcare </li></ul>
    7. 7. Participants <ul><li>National Directorate of Health </li></ul><ul><li>Experts; </li></ul><ul><ul><li>Epidemiologist with specific knowledge on incidence/prevalence of NTDs (if possible, national EUROCAT representative) </li></ul></ul><ul><ul><li>Gynaecology </li></ul></ul><ul><ul><li>Paediatrics </li></ul></ul><ul><ul><li>Medical ethics </li></ul></ul><ul><ul><li>Social medicine </li></ul></ul>
    8. 8. Program in brief <ul><li>Welcome </li></ul><ul><li>Situation report: Incidence and prevalence of NTDs </li></ul><ul><li>Medical, social and ethical implications of today's practice for prevention </li></ul><ul><li>Experiences from existing prevention strategies </li></ul><ul><li>Possible measures to be considered </li></ul><ul><li>Next steps and who will be responsible </li></ul><ul><li>Wrap up </li></ul>
    9. 9. Political follow up <ul><li>Contact with Health Ministers and the Standing Committees for Health in the national parliaments for meetings on; </li></ul><ul><ul><li>The need for new policy </li></ul></ul><ul><ul><li>The need for political pressure on the authorities responsible </li></ul></ul><ul><ul><li>The need for a new, state financed public campaign on folate supplement in next year’s budget </li></ul></ul>
    10. 10. Media coverage so far I <ul><li>2010: </li></ul><ul><ul><li>Chronicle by Spina Bifida and Bayer on Rare Disease day in Norway. </li></ul></ul><ul><ul><ul><li>NTDs can be prevented with folate </li></ul></ul></ul><ul><ul><ul><li>Current strategies are not working </li></ul></ul></ul><ul><ul><ul><li>We will initiate a new dialogue on improving prevention strategies with experts and authorities </li></ul></ul></ul><ul><ul><li>Article after the round table meeting and before political meetings: </li></ul></ul><ul><ul><ul><li>Special focus on ethical challenges by secondary prophylaxis </li></ul></ul></ul><ul><ul><ul><li>Concluding with Spina Bifidas expectations on a policy change and a public campaign. </li></ul></ul></ul>
    11. 11. Media coverage 2010
    12. 13. Media coverage so far II <ul><li>2011: </li></ul><ul><ul><li>Editorial in the Journal for the Norwegian Doctors’ Association, January </li></ul></ul><ul><ul><ul><li>NTDs can be prevented </li></ul></ul></ul><ul><ul><ul><li>Prevention potential by folate is not fully utilized </li></ul></ul></ul><ul><ul><ul><li>New initiatives, e.g. awareness campaigns, are needed </li></ul></ul></ul><ul><ul><li>TV coverage two consecutive days, April </li></ul></ul><ul><ul><ul><li>Abortions as a secondary prevention strategy is unacceptable </li></ul></ul></ul><ul><ul><ul><li>Need for better awareness campaigns </li></ul></ul></ul>
    13. 15. Next steps <ul><li>Better Scandinavian alignment </li></ul><ul><ul><li>Pan-Scandinavian meeting, Brussels June 28th </li></ul></ul><ul><li>Political follow up in all three countries </li></ul><ul><ul><li>Political contacts in Sweden and Denmark </li></ul></ul><ul><li>Media follow up in Sweden and Denmark </li></ul><ul><li>Dissemination of the second report on NTDs in Europe </li></ul><ul><ul><li>Scandinavian “Road show” with IFs President Pierre Mertens </li></ul></ul><ul><ul><ul><li>Seminars with health committees in the parliaments </li></ul></ul></ul><ul><ul><ul><li>Meetings with health ministers, where possible </li></ul></ul></ul><ul><ul><ul><li>Media interviews </li></ul></ul></ul>