Rome, April 15 (beraking latest news Salute) – “Patients with myeloproliferative neoplasms have faced numerous risks in the last year, primarily related to isolation and care difficulties. Those who live with a myeloproliferative neoplasia often face loneliness and the fear of not feeling accepted and understood or not to have their rights recognized at a legal level, as there is no clear information on these haematological tumors. Faced with the difficulties that patients with MPN and the health system are facing, it becomes a priority to implement initiatives and services who can support the maintenance of the diagnostic, therapeutic and care pathway, starting with information and support for patients and their families, in sharing the many problems they encounter in the daily management of the disease “. This was stated by Sergio Amadori, national president of AIL, speaking at the meeting to present the information campaign ‘Mielo-Spieghi’, promoted by Novartis, in collaboration with Aipamm (Italian association of patients with myeloproliferative diseases) and with the patronage of Italian association against leukemia, lymphomas and ieloma and of the Mpn Advocates Network. An activity program that focuses on the active role of patients, to draw attention to symptoms and improve disease management.
“Campaigns like Mielo-Spieghi – continues Amadori – are always absolutely fundamental, but in particular in this moment that we are experiencing in which the situation has become even more critical. The pandemic has unhinged the entire health system of the country, including the oncohematological structures care for these patients. We have seen reorganization of hospital care facilities, the transfer of doctors, including haematologists, from their wards to intensive care units. Then there was the fear for the hospital: doctors, but also patients and family members feared that the hospital could become a cause of contagion. The result? The patients went into crisis, there are those who delayed visits and checks and neglected therapies “. But the virus, warns the president of Ail, “does not discount anyone, it can be caught in any place and in any circumstance. The risk is always there”.
The pandemic emergency, Amadori admits, “has taught us two things: that blood cancers, in the case of infection, increase the possibility of complications – he underlines – and that these cancers do not wait for the pandemic to pass, they do not wait for anyone”. The real enemy of oncohematological patients, including those who have contracted Covid disease, according to Amadori, “is the tumor which, if not controlled by the therapies, represents the main cause of admission to intensive care. So the diagnosis cannot be neglected,” therapy cannot be neglected, controls must not be neglected “. Therefore, the president of Ail calls for vaccination: “Everyone vaccinate, because only in this way can we reach the so-called herd immunity and be able to return to a normal life”.
The aim of the Mielo-Spieghi campaign is to convey clear and correct information on onco-haematological pathologies, a work that Ail has been carrying out for years. “In particular, in this last year – recalls Amadori – as an association we have developed a series of initiatives, seminars and online meetings to promote more transparent information, also from a scientific point of view, on blood cancers, starting from diagnosis up to to therapy and follow-up after therapies. These are meetings dedicated to the patient and caregiver with the collaboration of haematologists, volunteer associations and pharmaceutical companies “.