1. Combatting malnutrition: The patient’s response
dr. Cees Smit
Brussels, November 8, 2011

2. Mission EGAN / IGA
To create a patient’s voice in health policy issues and health research
In a world in which genetic, multifactorial and congenital conditions are diagnosed in it’s early stages of development, understood, effectively treated, prevented (often rare)
And that the people involved are
adequately supported

3. Coverage of EGAN/IGA Only umbrella groups addressing nutrition
The International Genetic Alliance represents 7 regional and continental patient alliances from Eastern & Western Europe (EGAN), Asian Pacific, China, India, Australia, New Zealand, Southern Africa, Middle East, Latin America and North America.
In total around 2,800 patient organisations

4. Further reading
2004
2004

5. Nutrition Summit
BioVision, Lyon
March, 2011
FENS, Madrid
October, 2011

6. Declaration sent to 80 Ministers for Health worldwide on 28 March 2011
We strongly believe that public private partnerships are the most effective vehicle to deliver improvements in micronutrient intakes and health, and we remain committed to promoting the best nutritional solutions to meet the needs of patients and other people with impaired health, other citizens and society
+ policy recommendations (see Newsletter on USB stick).
Follow up with a Global Nutrition & Health Forum (Madrid)

8. Preparing for Life (1)
a joint venture of patients, science and services working with other partners to meet the UN- millennium development goals:
- reduce child mortality and morbidity
improve maternal and child health

9. Preparing for Life (2)
The international expert meeting – in association with ErasmusMC – in Geneva (February 2&3, 2012)
Decision making meeting with WHO in Geneva (February 6&7, 2012)

10. Relevance of nutrition for patients
The relevance of ‘nutrition’ for patient groups can differ significantly.
Its importance is strongly dependent on the role nutrition or nutritional aspects can play in the prevention, treatment and management of the disease or disability
Affected families are looking for information
Society interested in health and ageing

11. Identified subgroups Specific diseases (coeliac, anemia, diabetes,
Crohn & Colitis, COPD, etc.)
Perinatal, maternal and elderly
(nutrition following the life cycle)
Malnutrition and nutritional supplements
(hiv/aids, cancer, pre- and post operational)
Nutritional aspects of metabolic diseases
Nutrition and prevention (life style)
Global world issues (malnutrition, iodine)

12. Focus on malnutrition
European Nutrition for Health Alliance (ENHA) addresses malnutrition (
Affecting around 20 million citizens and costing EU governments up to 120 billion/yr.
(Ref.: Ljungquist et al., Clin Nutr 2010; 29)
ENHA’s advises routine nutritional screening
& follow-up on malnutrition in community care, nursing homes & hospitals
Joint conference with patients early 2012

13. ‘Push’ and ‘Pull’ aspects (1)
It is essential that specific patient groups with nutritional problems actively participate in the development of policies and products
So far, it’s a ‘push’ approach
A ‘pull’ approach is recommended
The ‘pull’ approach can be triggered by stories from ‘expert patients’ in areas where nutrition plays an important role (like in celiac disease)

14. ‘Push’ Model

15. ‘Pull’ Model

16. Patient participation
The combination of ‘evidence-based’ scientific knowledge with the ‘practice-based’ knowledge of patient groups leads to an ‘added’ value.
There are a number of promising examples of this added value from patient groups in the drug development process (new concepts, new products, long-term financing biobanks),
That could bring the nutrition issue forward

17. Conclusions Most patient groups have nutritional needs
EGAN/IGA are natural partners for a ‘pull’ approach in (mal)nutrition issues and health care policy making
EGAN/IGA fully supports this conference
Action: a roundtable with expert patients to address the (mal)nutrition and health
issue at large, early 2012

18. For more information Chantal Gill’ard, executive director EGAN/IGA
Cees Smit, policy advisor EGAN/IGA