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TIF-WHO Official Report | TIF-WHO Joint Meeting

We are pleased to announce the publication of the official report on the joint WHO-TIF meeting held in November 2007 in Nicosia, Cyprus entitled “The management of haemoglobin disorders”, convened at the request of the WHO’s Human Genetics Programme (HGN).

The meeting brought together 28 experts from developing and industrialised counties to review the current status of epidemiology and control services for Hb disorders globally, to identify local and regional priorities, and to develop a 5-year plan of action to improve the care and prevention of Hb disorders in low and middle income countries.

The full report can be downloaded here.

The meeting identified important issues that need to be considered. Particular problems facing developing or low-resource countries include:

• A lack of up-to-date, reliable epidemiological data – including incidence, carrier and prevalence rates and the clinical spectrum across countries and regions;
• The existence of many other healthcare challenges and priorities, such as malaria, infections and malnutrition;
• Weak health infrastructures, as well as poor transport and communication infrastructures generally;
• Challenges posed by low literacy rates, religious and cultural factors that often hinder communication of information and the implementation of some aspects of control programmes;
• A lack of recognition of Hb disorders by governments but also by international health-related organisations and agencies as well as funding bodies;

• An absence of collaboration with and support for professional and patient-oriented organisations.

Problems for industrialised countries include:

• A lack of recognition by governments of the growing public health burden of Hb disorders;
• A lack of awareness by health professionals and the community about Hb disorders;
• The need to improve access to existing services;
• The need to promote regional and international networks of collaboration between existing centres of excellence, and the need for core funding for such centres and networks;
• The fact that patients with Hb disorders mostly belong to ethnic minorities and are often widely dispersed within countries, producing the need for strategies to address linguistic and cultural factors.

Joint 5-Year Plan of Action endorsed

It was agreed that there is a need for improved data on the global toll of haemoglobin disorders, particularly thalassaemia and sickle cell disease – including birth incidence, prevalence, mortality and disability. WHO and its partners, such as TIF and SCD organisations, can play a significant role in gathering epidemiological data on Hb disorders and shedding light on the cost – in economic and social terms – of action versus inaction.

A joint 5-year plan of action was agreed as a result of the meeting to address the following points:

1. Review the current status of epidemiology and control services globally, in order to asses the magnitude of the problem (2008)
2. Identify local and regional problems, needs and priorities, including  efforts to spread awareness and train health professionals in every affected country (2008-2009)
3. Prepare and publish 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 (2008-2009)
4. Support the establishment and promotion of centres of excellence and a network of collaboration between them, between WHO regional and collaborating centres, patients’ organisations, other community-based organisations and other stakeholders. (ongoing)
5. Establish regional expert advisory groups (2008-2009)
6. Fundraising (ongoing)
7. Develop 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. (ongoing)
8. Establish an official World Haemoglobinopathies Day
9. Collaboration between stakeholders (ongoing)

Regular updates on the progress of these joint efforts will be published in these pages.