TIF-WHO Official Report | TIF-WHO Joint Meeting

Within WHO, haemoglobin disorders and other genetic diseases come under the wider area of non-communicable diseases (NCD). The current priority agenda for NCD is dominated by major diseases that have an immense global economic impcat, such as diabetes, cardiovascular diseases and cancer. So it is up to non-governmental organisations, such as TIF, in partnership with affected countries, to push for action on haemoglobin disorders.  

Inspired by the outcomes of our participation in a capacity-building workshop last May (see article in issue 55), the TIF office has updated its strategy for collaboration with WHO at all levels. We are in contact with the WHO headquarters, regional and country offices and WHO collaborating centres, to drive the materialisation of the official TIF-WHO fie-year plan of action (2008).

Some of our objectives include:

  • Updating the official WHO Guidelines on haemoglobin disorders (last updated in 1993) while taking into consideration regional needs
  • Adoption of a World Thalassaemia Day on 8 May as an official awareness day under UN auspices
  • Pushing for the Executive Board Resolution EB118R1 on Thalassaemias, adopted in May 2006, to be adopted as a WHA resolution at the next World Health Assembly, thus giving it more political force
  • Organisation of several educational workshops and events under WHO auspices

WHO-TIF OFFICIAL 5-YEAR PLAN OF ACTION

The official report on the joint TIF-WHO meeting held in November 2007 entitled “The Management of Haemoglobin Disorders” reviews the current status of epidemiology and control services for Hb disorders globally, identifies local and regional priorities, and sets out an official five-year plan of action to improve the care and prevention of Hb disorders in low and middle income countries.

The joint 5-year plan of action proposes to:

  1. Review the current status of epidemiology and control services globally in order to assess the magnitude of the problem
  2. Identify local and regional problems, needs and priorities, including efforts to spread awareness and train health professionals in each affected country
  3. Prepare and publish WHO guidelines for the control (prevention and clinical management) of Hb disorders, including cost-effective intervention, evidence-based information and best practices focusing on establishing protocols for consistent care of patients and for prevention
  4. Support for the establishment of centres of excellence and networks of collaboration between them, WHO regional and collaborating centres, patients’ organisations, other community-based organisations, and other stakeholders
  5. Establishment of regional expert advisory groups
  6. Fundraising
  7. Development of cost-effective interventions and approaches, beginning with the preparation of a scientific paper on cost-effective interventions and the economic, social and cultural implications of effective prevention policies in the provision of quality health services to patients
  8. Establishment of a World Haemoglobinopathies Day
  9. Collaboration between stakeholders

Download the full report here.

Problems for low-resource countries:

  • Lack of up-to-date, reliable epidemiological data – including incidence, carrier ad prevalence rates and the clinical spectrum across countries and regions
  • Other healthcare challenges and priorities, such as malaria, infections and malnutrition
  • Weak health infrastructures, poor transport and communication infrastructures
  • Challenges posed by low literacy rates, cultural and religious factors which can hinder communication of information and the implementation of some aspects of control programmes
  • Lack of recognition of Hb disorders by governments, international health-related organisations and funding bodies
  • Lack of collaboration with, and support for, medical professionals’ bodies and patients’ organisations

Problems for industrialised countries:

  • Lack of recognition by governments of the growing public health burden of Hb disorders
  • Lack of awareness by health professionals and communities
  • Need to improve access to existing services
  • Need to promote regional and international networks of collaboration between existing centres of excellence, and the need for sustainable funding for such centres and networks
  • Patients with Hb disorders mostly belong to ethnic minority groups and are often widely dispersed within countries -> need for strategies to address linguistic and cultural problems

 

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