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Thalassemia, a strategic plan to bring patients and thalassaemia back to the centre
L'ospedale Microcitemico (foto Ansa)
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A strategic plan to redefine the mission and role of the Microcitemico hospital , bringing it back to a regional reference center, with reference to research, treatment and assistance aimed at thalassemia patients.

This is what emerges from a proposal for a resolution presented to the VI Regional Commission "Health and Social Policies" first signed by Rossella Pinna and Gianfranco Ganau (Pd) and signed by the minorities represented in the commission who asked the President to discuss it in the next session of the commission , convened for Wednesday 16 November.

Among other requests, plan concrete actions aimed at overcoming the blood supply emergency and at encouraging donation through ad hoc communication campaigns and awareness-raising initiatives ; establish the PBM (Patient Blood Management) system and the Good Use of Blood Committee (CoBuS) in all companies; urgently activate the recruitment of personnel to guarantee treatment services and blood collection and processing; create the regional network of hemoglobinopathies ; check the implementation status of the technical-scientific table for rare diseases . And also to create diagnostic and therapeutic care pathways (PDTA) to respond to the specific health needs of patients with thalassemia and improve their quality of life by ensuring, in line with national guidelines and objectives, equal access to highly specialized care, based on shared guidelines in terms of prevention, diagnosis and treatment; evaluate the feasibility of guaranteeing, if available, the new drugs that allow the reduction of the transfusion requirement in thalassemic patients.

«Living sick in this time, needing treatment or prevention amid the pandemic and lack of personnel, between decisions and indecisions in the management of Sardinian healthcare has become increasingly complicated, and the most fragile and struggling people are paying the consequences », explains the honorable dem Rossella Pinna in a note. «In particular, we have seen the weight that young and adult patients are forced to bear, who from all over the island refer to the Microcitemico hospital for transfusion and life-saving therapies».

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"It is essential to take stock of the choices made and find solutions that allow patients with thalassemia, both pediatric and adult, not to experience the drama of blood shortage - continues Pinna - which in this year, more than in others, has had an impact on dramatically on the health and quality of life of thalassemic patients and hospital activities, even leading to the halt of postponeable surgical interventions". «An issue, that of the supply and management of blood , which must naturally be administered as an absolute priority for everyone . It is not possible to talk about thalassemia without addressing the issue of rare diseases, the reactivation of the technical table for thalassemia and hemoglobinopathies and, even without providing a strategic plan for the Regional Hospital for Microthalassemia named after Antonio Cao, the research and treatment for thalassemia, for rare diseases, for oncohematology, pediatric neurology and neuropsychiatry as well as for genetic and prenatal diagnoses".

«The future of the Microcitemico Hospital cannot be reduced to a mere organizational fact, merging and management of ARNAS Brotzu or Local Health Authority n. 8 of Cagliari - the conclusion - Here the future of an important piece of Sardinian health care, of research and the quality of life of patients, of children and adults is at stake ".