Thalassaemia International Federation
The Thalassaemia International Federation, a patient-led organisation safeguarding the rights of the global thalassaemia patients’ community, would like to welcome all WHO’s efforts to-date for the promotion of patient safety and invite the Health Assembly to adopt the draft resolution recommended by the Executive Board (in resolution EB144.R12).
Thalassaemia is a rare chronic disease and one of the most common hereditary disorders reported in the world, with a world population of about 3% being heterozygous for thalassemia major. A chronic condition, such as thalassaemia, requires regular medical attention from infancy, as well as changing clinical management, due to complications that arise throughout childhood, adolescence and adult life. Therefore, patient safety for our community is key to survival.
As the global landscape of healthcare is changing due to the development of new treatments, technologies and care models, additional threats to safe care are added to the existing ones. In particular, concerns about transfusion practices in low- and middle- income countries and the transmission of infections, as well as the safe use of novel therapies, have been a topic of discussion within our community.
We thus urge Member States to:
* RECOGNISE patient safety as a key and essential means to successfully deliver universal health coverage;
* IMPROVE healthcare systems based on patient-reported outcomes, resulting from national patient engagement strategies and health literacy programmes;
* INVEST on patient empowerment and capacity building, for the meaningful involvement of patients in policy design and implementation processes.
Finally, we would like to express our sincere appreciation and confirm our strong support for WHO’s efforts concerning patient safety. We are ready to work with all relevant stakeholders to address this major challenge.