Blood cancers, these strangers? It seems so. And not only because the diagnoses of the rarest pathologies are difficult and often happen by chance, but also because the information to date has not proved sufficient to raise awareness on the issue widely, highlighting its symptoms and characteristics. Policitemia vera, essential thrombocythemia, mielofibrosi are three rare blood cancers with difficult names that most people have never heard of.
These so-called chronic myeloproliferative neoplasms (MPN) I’m characterized by an alteration of hematopoietic stem cells, from which all blood cells are derived. At the base of these neoplasms there are non-hereditary genetic defects, including one of the most frequent is the JAK2 gene mutation. The knowledge of the genetic basis of MPN has allowed the development of 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.
However, the spread of Covid-19 has worsened the current picture of a situation which, precisely because of the lack of information, already saw treatments started with years of delay and risks for patients, who live in a condition of isolation.
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.
“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 stressed Sergio Amadori, AIL National President (Italian Association against Leukemia, Lymphomas and Myeloma), on the occasion of the presentation meeting of the information campaign “HONEY-Explain“, Promoted by Novartis, in partnership with AIPAMM (Italian Association of Patients with Myeloproliferative Diseases) and with the patronage of AIL he was born in MPN Advocates Network. “Faced with the difficulties that patients with MPN are facing, it becomes a priority to implement initiatives and services that make them understand the importance of not interrupting their diagnostic-therapeutic path”.
Precisely for this reason, the campaign HONEY-Explain provides an activity program that focuses on the active role of patients, to draw attention to symptoms, shorten the time to diagnosis and improve the management of the disease.
«The symptoms of these neoplasms they are often nonspecific, come itch, headache, weakness e 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 for the underlying myeloproliferative neoplasm, which progresses without having been properly assessed, “he explains. Francesco Passamonti, Professor of Hematology at the University of Insubria in Varese and Director of Hematology at 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. Immediately intervene with a blood count and search for the JAK2 gene mutation, which is the more frequent genetic cause underlying these neoplasms, would allow for a rapid diagnosis and implementation of targeted treatments with target therapies and benefits for patients “.
Through multiple tools and initiatives, HONEY-Explain supports patients and their families, to offer opportunities for discussion and sharing and to foster an increasingly active role in the management of the disease. Among the novelties of the information project is the online knowledge path for patients and caregivers: by accessing the link www.alleatiperlasalute.it/mielo-spieghi patients will be guided through a series of questions and food for thought, with the aim of fostering greater awareness of the disease. A useful tool for embarking on a path of improvement and dialogue with your haematologist.
«As President of an association that works every day alongside those living with a myeloproliferative neoplasm, I experience the importance of involving the patient as an active and aware protagonist of their own path. An active role that must begin right from the attention to the symptoms, often common and difficult to associate with a haematological disease “, underlines Antonella Barone, President AIPAMM. «Do not underestimate your discomfort, do not wait to contact the 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 ».
Needs that emerge every day on the Facebook page HONEY-Explain, opened in 2019 and grown thanks to the participation of a community that now includes over 23,500 fans.
«From constant dialogue with patients 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 Roma2. «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 ».
In addition to the Facebook page @MieloSpieghi, the campaign makes available to patients and family members a website www.alleatiperlasalute.it/mielo-spieghi/, informative materials, virtual meetings with experts, a series of podcasts available for free on the main platforms and calls for creatives and videomakers 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.
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