Thalassaemia International Federation
The Thalassaemia International Federation, safeguarding the rights of the global thalassaemia patient community, welcomes the recognition of noncommunicable diseases as a health priority, now taking prevalence over infectious diseases and malnutrition.
Nonetheless, the issue of noncommunicable diseases has become synonymous with the most prevalent categories of cardiovascular diseases, diabetes, cancer and chronic respiratory diseases, and obesity, primarily because these are linked to common risk factors and are thus preventable. Even though it is recognised that children ‘can die from treatable conditions, other than the above (see WHA66/2013/REC/1, Annex 4), the whole policy revolves around the abovementioned adult conditions.
The Thalassaemia International Federation represents a group of chronic, hereditary disorders affecting the haemoglobin molecule, which are the commonest of a much wider group of chronic disorders, each one rare in itself but which as a whole affect a very large proportion of the population. These rare and chronic disorders are under the general title of birth defects and are given a secondary role in the existing policy. Birth defects are in general underestimated, if we consider that there are between 7,000-8,000 diseases, most of which are congenital and chronic, affecting 6-8% of the population. This is not a negligible health burden when considering the chronicity and complexity of care that they require.
Through this statement, we would like to urge Member States to:
RECOGNISE the need to revisit these disorders and to consider a separate disease-specific approach in planning health services;
PROMOTE separate policies from the major noncommunicable diseases, which are so far promoted in the WHO agenda for noncommunicable diseases.