The patients with thalassaemia in Sweden are steadily increasing due to migrations from the Middle East mainly from countries, where thalassaemia is most prevalent. This growing trend was confirmed during a TIF delegation team’s visit to Sweden, on November 15-16, 2018. This visit fell within the activities implemented as part of the ‘THALassaemia In Action (THALIA)’ project.
The delegation team, consisted of Dr. Michael Angastiniotis, TIF’s Medical Advisor, and Mr. George Constantinou, TIF’s Board of Directors Assistant Secretary. The team had the opportunity to visit and meet with scientists and medical staff of:
- The Department of Clinical Chemistry at the Skane University Hospital, Malmo
- The Lund Hospital Children’s Day Care Centre
- The Karolinska University Hospital in Stockholm
- The NGO’s ‘Swedish Blood and Cancer Association’ offices
Main issues highlighted:
- Awareness of haemoglobinopathies and linked health risks, and social impact is generally limited to a small number of specialists,
- There are no special screening programmes for thalassaemia and sickle cell disease,
- Healthcare infrastructures where treatment for patients with thalassaemia is performed are of high standards. Nonetheless, patients stated to often feel isolated and marginalized, due to the lack of a respective association advocating for their rights and needs.
Next steps to be taken:
The TIF delegation team, in accordance with the national stakeholders, has concurred to combine efforts and jointly work toward a sustainable direction, as per the actions mentioned below:
- Promote a national registry with epidemiological and clinical data on the thalassaemia population, as a means of guiding Health authorities and providers to plan cost-efficient services, and to meet patients’ needs and expectations,
- Foster patients’ empowerment, with the support of TIF and the Swedish Blood and Cancer Association, and create a patient association,
- Enable healthcare professionals and patients to capitalize on TIF’s expertise, through the organization of a pan-Scandinavian patients’ workshop at a later stage.