Delays, fewer new diagnoses, feelings of isolation. These long months of pandemic have left a heavy aftermath on all sufferers, including those with a rare blood cancer. The ‘MIELO-Expieghi’ campaign is dedicated to these patients, which aims to break the silence on Philadelphia negative chronic myeloproliferative neoplasms (MPN) with a program of activities that put patients in the foreground. From social networks, to podcasts, through virtual meetings and a video contest, up to the online knowledge path, which offers patients and family members a practical tool to reflect and improve their active involvement.
The decrease in diagnoses
In a context that was problematic even before the pandemic, Covid19 has led to a further worsening of the situation. 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 a further 17% fewer diagnoses were added between September and November, compared to the same periods of the previous year. “The symptoms of these neoplasms are often nonspecific, such as itching, headache, weakness and fatigue and are hardly recognized as possible red flags of a haematological disease. This leads to intervention to treat the symptoms, delaying the diagnosis and the initiation of targeted treatment, ”he explains Francesco Passamonti, Professor of Hematology at the University of Insubria in Varese and Director of Hematology ASST Sette Laghi di Varese. “Diagnostic delays expose patients to risks associated with uncontrolled progression of the disease, such as the recurrence of frequent thrombotic episodes. Intervening immediately with a blood count and the search for the JAK2 gene mutation, which is the most frequent genetic cause underlying these neoplasms, would allow a rapid diagnosis and implementation of targeted treatments with target therapies and benefits for patients. “.
Chronic myeloproliferative neoplasms (MPN)
Polycythemia vera, essential thrombocythemia, myelofibrosis are three rare blood cancers that most people have never heard of. MPNs are characterized by an alteration of hematopoietic stem cells, from which all blood cells derive. At the base of these neoplasms there are non-hereditary genetic defects, among which one of the most frequent is the mutation of the JAK2 gene. The knowledge of the genetic basis of MPN has made it possible to develop molecules capable of specifically inhibiting the action of the genes responsible for the disease, paving the way for a new treatment approach based on molecular diagnostics.
Isolation and denied rights
The very fact that these are rare cancers contributes to making these people feel more alone. “Patients with myeloproliferative neoplasms in the last year have found themselves to face with greater weight the isolation and care difficulties, as well as not having their legal rights recognized, as there is no clear information on these hematological cancers” he declares Sergio Amadori, national president Ail. “Faced with the difficulties that patients with MPN are facing, it becomes a priority to implement initiatives and services that make the patient understand the importance of not interrupting their diagnostic-therapeutic path”.
The ‘MIELO-Expieghi’ campaign
With this goal, the MIELO-Spieghi information campaign was born, promoted by Novartis, in collaboration with AIPAMM (Italian Association of Patients with Myeloproliferative Diseases) and with the patronage of AIL (Italian Association against Leukemia, Lymphomas and Myeloma) and the MPN Advocates Network. The campaign includes an activity program that focuses on the active role of patients, to draw attention to symptoms, shorten the time to diagnosis and improve management of the disease. “The involvement of the patient as an active and aware protagonist of his own path is important. An active role that must begin right from the attention to the symptoms, often common and difficult to associate with a haematological disease “, explains Antonella Barone, president of AIPAMM. “Do not underestimate your malaise, do not wait to consult a doctor and ask for further information are the first steps towards diagnosis and treatment, which, for those living with these pathologies, can mean recovering a quality of life that seemed to be lost”.
The patient community
The MIELO-Spieghi Facebook page, opened in 2019 and grown thanks to the participation of a community that now includes over 23,500 fans, is also tracking the needs of these patients every day. “From the constant dialogue with patients on the Facebook page, there is a great need for clear information on these rare neoplasms, which often remain unknown even after diagnosis”, he explains. Elisabetta Abruzzese, Hematology Hospital S. Eugenio, Asl Roma 2. “The 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 MIELO-Spieghi Facebook page has proved to be a tool of great value and potential over time “.
Information and contest
Among the novelties of the campaign is the online knowledge path aimed at patients and caregivers. By accessing the link http://www.alleatiperlasalute.it/mielo-spieghi, patients will be guided through a series of questions and food for thought, with the aim of promoting greater awareness of the disease. There are also virtual meetings with experts, a series of podcasts available for free on the main platforms. In addition, creatives and videomakers are brought together in a video contest, a challenge of ideas that will lead to the creation of a video in the coming months, to tell MPNs with a new look. The calendar with all the initiatives is available on the Facebook page @MieloSpieghi and on the website www.alleatiperlasalute.it/mielo-spieghi/ for a calendar full of initiatives.
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