Rome, April 15 (beraking latest news Salute) – Difficult diagnoses that often occur by chance, treatments started with years of delay and risks for patients, who live in a condition of isolation. Then came Covid-19. In a problematic situation even before the pandemic, the emergency led to a further collapse. According to data from an Iqvia research, between March and June 2020 there was a decrease of about 21% in new diagnoses for onco-haematological diseases, to which was added a further 17% fewer diagnoses between September and November, compared to the same periods of the previous year. This is the scenario outlined today on chronic myeloproliferative neoplasms (Mpn), on the occasion of the presentation meeting of the ‘Mielo-Spieghi’ information campaign, promoted by Novartis in collaboration with Aipamm (Italian association for patients with myeloproliferative diseases) and with the sponsored by Ail (Italian association against leukemia, lymphomas and myeloma) and the Mpn Advocates Network. An activity program that focuses on the active role of patients, to draw attention to symptoms and improve disease management.
Mielo-Spieghi was born in 2019 with a Facebook page (@MieloSpieghi), created thanks to the supervision of a board of 10 expert hematologists. The project has grown thanks to the participation and interest of an increasingly numerous and active community, which today has exceeded 23,000 fans. Among the novelties there is the online knowledge path aimed at patients and caregivers. By accessing the link www.alleatiperlasalute.it/mielo-spieghi/it, patients will be guided through a series of questions and food for thought, with the aim of promoting greater awareness of the disease. A useful tool for embarking on a path of improvement and dialogue with your haematologist.
In addition to the Facebook page and the website, the campaign offers patients and family members information materials, virtual meetings with experts, a series of podcasts available for free on the main platforms and brings together creatives and videomakers in a video contest, a challenge of ideas that in the coming months will lead to the creation of a video, to tell the MPNs with a new look. From April 15th to May 10th, creative ideas will be called to recount the experiences and emotions of those living with a myeloproliferative disease and shed light on a too often forgotten reality that deserves attention. The ideas will be evaluated by the Mielo-Explain Committee and the idea selected from those collected will give life to a video, which will be broadcast online on the campaign channels.
Objectives of the initiative: to convey clear and correct information, promote greater awareness and offer opportunities for discussion and sharing on the daily management of these rare onco-haematological diseases, as well as supporting patients and their families.
“From the constant dialogue with patients on the Facebook page @MieloSpieghi, the great need for clear information on these rare neoplasms emerges, which often remain unknown even after diagnosis – explains Elisabetta Abruzzese, hematology at the Sant’Eugenio Hospital, ASL Roma2 – I many aspects of the daily management of the disease represent a fundamental component for the success of the treatment process and for this reason an active and aware attitude is necessary on the part of the patient. An objective that can only be reached through open and continuous dialogue and in this sense the Facebook page by Mielo-Spieghi has proved over time to be an instrument of great value and potential “.
Three virtual appointments dedicated to patients and their families are scheduled for 2021. Three moments of information and discussion, which will involve three clinical centers on the national territory, hosting the reference experts in an informal context, of open dialogue with those who live with the MPs. The meetings will be an opportunity to address doubts, questions, but also to share experiences and testimonies of life with these rare onco-haematological diseases.