“It is a very important day which establishes the alliance between the scientific society and the patients’ association. We welcomed the idea with great enthusiasm because it came from the Italian Society of Hematology (SIE) which brings clarity to the world of patients and public opinion. It is important that this type of initiatives” of correct information to patients “have continuity and I hope they give hematology more strength in the dialogue with the institutions. We can no longer go in random order, we must be privileged interlocutors of the Ministry of Health, and beyond “. This was stated by Giuseppe Toro, national president of the Italian association against leukemia, lymphoma and myeloma (Ail), speaking this morning in Bologna, at the second national event ‘Sie meets patients’.
“Until now – observes Toro – we were convinced that our universal National Health Service (NHS) could be free from problems of economic sustainability, but it is our duty to understand where and when inequalities have a significant impact on the outcome of care. We are convinced that an association like ours, and the entire third sector, are ready to plan assistance services together with the State, participate in healthcare welfare planning, work together with the National Health Service to heal the gap between social and healthcare that impacts on inequality and health poverty”.
“The roots of our culture and society – continues the president of Ail – are rooted in a heritage, in a drive for solidarity handed down by Christianity, the basis of modern social and health care. Volunteering has extended its tasks by supporting sick people, their families and the scientific research. Ail, founded in 1969, has grown over the decades in keeping with the assumption of the founders. Research must be supported and encouraged and patients must be supported and helped in every way, aware that they exercise a legitimate cultural and political role with the institutions as interlocutors “. Currently “there are 83 local offices and 15,000 volunteers operating from north to south – recalls the president of Ail – with people who work in wards, hematology clinics and alongside patients, but also in solidarity events and fundraising campaigns, socio-medical assistance at home, transport and accompaniment to and from the treatment service”.
“The future must see our association more concretely engaged in fulfilling the mission for which it was born – underlines Toro -. AIL allocates millions of euros every year to support scientific research. First of all to Gimema (Italian group of haematological diseases of the adult), a prestigious clinical research group in which all the hematology departments collaborate to identify the best diagnostic-therapeutic protocols. Ail finances data managers, psychologists, doctors, researchers, biologists and is close to the 150 hematological centers by purchasing innovative tools and contributing to the construction and restructuring of model centers and transplant centers”.
Furthermore, “like AIL – remarked the national president – we have a duty, with scientific societies, to work to ensure that research is adequately supported by the institutions and clear guidelines are given to the regions so that psychological nurses and data managers are included in the organic plans of the structures public health. It is not conceivable that each region, even each local health authority, decides on the legitimacy of hiring key professional figures”. Returning then to patients, “it is necessary – reflects the Ail president – that home assistance is finally and completely perceived as a resource for hospitals and benefit for the patient, a humanization of the therapeutic path. An adequate number of specialists in hematology specialization schools must be strongly requested for their chronic shortage. There is understanding and support from the public opinion: it has never failed from the Italians, not even during the pandemic, the support and commitment to research”.
On the prevention and protection of the environment “in areas at risk, where leukemia and tumors are present in a statistically higher way – concludes Tore – decisive cultural and reclamation projects must be activated to improve the environmental conditions of urban areas in favor of health of citizens. On this we are organizing a conference on ‘environmental impact and health risk’ for next May 5 in Rome”.