A virtual TIF Delegation visit with stakeholders from Sweden took place on 08 December 2020. The Delegation Team consisted of Mr Panos Englezos (TIF President), Mr George Constantinou (TIF Ass. Secretary), Dr Michael Angastiniotis (TIF Medical Advisor), Ms Lily Cannon (TIF Operations Manager) and Mr Rawad Merhi (TIF Countries Officer).
The Delegation Team during the virtual meeting had the opportunity to meet with approximately 20 patients, parents and treating physicians from across Sweden and to learn about the current status relating to the prevalence, treatment and social integration of patients with haemoglobin disorders in Sweden, as well as introduction of new therapies (Reblozyl and Zynteglo – gene therapy). Moreover, identification of areas for improvement with the support of TIF were also discussed.
The meetings further explored the quality of life of patients with haemoglobinopathies in Sweden, and identified avenues of attaining the support of and closer partnership with TIF. The consensus of all stakeholders focused on the lack of prioritisation by the National Health Authorities to haemoglobin disorders (thalassaemia and sickle cell disease) both in terms of their multidisciplinary management but also concerning the societal integration of patients.
- There is no centralised care for thalassaemia and sickle cell disease in Sweden. Therefore patients (scattered across the country) are treated close to their homes. This means over 30 hospitals are provide care to patients without a system for annual referrals to expert centres for more specialised monitoring tests and care plans.
- Paediatric care is more organized and centralised.
- Guidelines for the management of thalassaemia patients exist and are updated regularly. More recently, national SCD recommendations have been developed.
- The exact number of patients in Sweden remains elusive on account of the unavailability of a national haemoglobinopathy register. This impacts the visibility of haemoglobinopathies to national health authorities, as patients are currently registered within the cancer registry.
- Improvement of knowledge and education, both for patients and healthcare professionals is imperative.
- Linguistic challenges are common among patients, who require brochures and information in their native languages or in Swedish.
- Further strengthening of efforts for the creation of a thalassaemia patient community / organization is required to combat