“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