The Outcomes of Patients with Haemoglobin Disorders in Cyprus: A Joined Report of the Thalassaemia International Federation and the Nicosia and Paphos Thalassaemia Centres (State Health Services Organisation)

Abstract

Haemoglobinopathies, including thalassaemias and sickle-cell syndromes, are demanding, lifelong conditions that pose a significant burden to patients, families, and healthcare systems. Despite the therapeutic advances and the resulting improvements in prognosis accomplished in past decades, these patients still face important challenges, including suboptimal access to quality care in areas with developing economies, changing epidemiology due to massive migration flows, an evolving clinical spectrum due to ageing in well-treated patients, and limited access to novel high-cost therapies. We herein describe the organization of healthcare services for haemoglobinopathies in Cyprus—with particular focus on beta-thalassaemia, the most prevalent condition in this region—along with selected patient outcomes. This report aims at underscoring the fact that nationally funded and well-coordinated prevention and care programmes for chronic and complex conditions, such as haemoglobinopathies, with active involvement from patient organizations lead to effective disease control and excellent outcomes in survival, quality of life, social adaptation, and public health savings, and allow timely and effective responses to emerging crises, such as the COVID-19 pandemic. The Cyprus paradigm could therefore serve as a blueprint for the organization or adaptation of haemoglobinopathy programs in other countries since these disorders are still widely occurring.

Thala_screen/lintas – Developing a Mobile Application to Identify Screening Targets in the Extended Family of Thalassemia

“…The trial phase was conducted to assess the acceptability and user experience of the Thala_screen/LINTAS mobile application. In this phase, both quantitative and qualitative research was employed in Forum Group Discussion (FGD) [27,28] involving representatives of thalassemia patient's parents (9), parent associations (9), various primary health centers in Bandung (10), the Bandung District Health O ce (2), the IT development team, and the research team. The moderator and interviewers followed a discussion guide collaboratively developed by the author to steer the conversation (Additional le 1).…”

“…The nancing is covered by national health insurance lead thalassemia is ranked as the fth most expensive catastrophic disease [4,5,7]. The increasing number of new cases as life expectancy improved with better care had implications for healthcare nancing due to the cost of complications [8][9][10]. To address this issue, a thalassemia control program is an imperative endeavor to speci cally focus on preventing the birth of newly affected babies [3,11,12].…”

Can Cyprus Afford Luspatercept? A Budget Impact Analysis of the Reimbursement of Luspatercept for the Management of Thalassaemia in Cyprus

“…The Pancyprian Antianaemic Society (PAS), established in 1970 as a patient support organization, played a pivotal role in advocating for comprehensive health coverage for all patients receiving treatment services. Their effective advocacy efforts led to the achievement of full public health coverage [ 8 , 9 ]. PAS has also been an ardent advocate in raising awareness for blood donation, and they are credited for the preservation of voluntary blood donation.…”

“…Within this backdrop, a major impediment, availability of blood, which of course serves other patients as well, was overcome. It is worth noting that Cyprus stands out as one of the few countries worldwide that maintains self-sufficiency in meeting its blood and blood product requirements [ 9 ].…”

Interpreting materia medica. A case study on Ioannes Archiatrus

“…With time one should also use agents that induce sneezing and vomiting on empty stomach…’. 20 See for instance 15 and 16 21 17 409. 22 link [last accessed 31.08.2023] 23 18 1110-1122.…”