Cohesion and more intense dialogue between hematologists and patients, support for patients and scientific research to face the numerous challenges of the present and the future in the hematological field. With these objectives, the Italian Society of Hematology (Sie) and the patient associations operating in the field of hematology met today in Bologna during the second conference ‘Sie meets patients’. At the event – an EIS note explains – there was talk of correct information, new social needs and rights, innovation and sustainability of treatments, confirming the EIS alongside the associations – headed by the AIL, the Italian Association against leukemia, lymphomas and myeloma – to guarantee correct and rigorous information to patients, family members and caregivers on blood pathologies and therapeutic novelties.
“Historically, SIE had always only dealt with educational activities for doctors and the promotion of scientific research in hematology – declares Paolo Corradini, president of SIE and director of the Hematology Division, Irccs Foundation National Cancer Institute of Milan, Chair of Hematology, University of Milan – The broader objective is to work side by side with the various organizations to bring them to the attention of the institutions”.
The role of the associations marked the first session of the meeting day moderated by Paolo Corradini and Giuseppe Toro, national president of Ail who took stock of the many social-health activities and services carried out to support hematological patients and their families in throughout Italy (accommodation homes, home care, transport, etc.) and on the future of the association, which intends to keep faith with its solidarity vocation characterized by the value of voluntary gratuity and support for scientific research. AIL is determined to work in collaboration with scientific societies so that research and assistance are supported by national and regional institutions and, together with the ESI, requests that patients under treatment and those who have overcome the disease be guaranteed full social and work rights as the right to be forgotten, the decriminalization of omitted information on previous illnesses once the period of time that allows us to speak of the “absence of illness” has passed.
The second session dealt with the issue of multidisciplinarity and the use of vaccines in haematological patients, nutrition during and after chemotherapy, psychological support and the role of physical activity. During the meeting, attention was focused on some diagnostic and molecular innovations and on the use of artificial intelligence, new immunotherapies such as Car-T, monoclonal antibodies in lymphomas and multiple myeloma. The therapeutic updates on haemophilia and thalassemia are interesting. Many open challenges await haematologists, from educational and training ones, to multidisciplinarity – essential given the progressive change in increasingly complex diagnostics and therapies, strongly oriented towards personalizing treatments – up to the fundamental issue of health system sustainability , increasingly at risk due to very costly services which can thus limit patients’ access to innovation.
High attention is paid to local medicine and home care. It is necessary to strengthen and integrate the hospital and the territory – he recalled during the event – so that when the patient is discharged from the ward he does not feel alone. It is necessary to involve nurses, health professionals and general practitioners who can increasingly become the point of reference for patients. “I believe that a common goal of immense importance is the need to convince doctors and institutions that research today must also deal with the sustainability of current therapies, because with the high healthcare costs, our excellent universal system will no longer be sustainable – concludes Corradini – we we would like to act before it is too late”.
In addition to Ail, the following were present: Asico, the Italian umbilical cord blood donor association; Admo, bone marrow donor association; Aipa – Italian association of anticoagulated patients; Avis, Italian Blood Volunteers Association; Favo, the Italian federation of voluntary oncology associations, Fedemo, the national federation of haemophilia patient associations and United onlus, the Italian federation of thalassemias, rare hemoglobinopathies and sickle cell disease.