Difficult diagnoses, which often occur by chance, treatments started with years of delay and risks for patients, who live in a condition of isolation. Then came the Covid19. In a problematic situation even before the pandemic, the emergency led to a further collapse and in some cases to treatment interruptions. 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 pathologies 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 of Patients with Myeloproliferative Diseases) and with the patronage of 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, shorten the time to diagnosis and improve the management of the disease.
“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 symptoms, delaying the diagnosis and initiation of targeted treatment for the underlying myeloproliferative neoplasm, which progresses without being properly assessed. – 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. Intervening immediately with a blood count and the search for the mutation of the JAK2 gene, which is the most frequent genetic cause at the base of these neoplasms, would allow to quickly arrive at a diagnosis and the implementation of targeted treatments with target therapies and benefits for patients. “.
True polycythemia, essential thrombocythemia, myelofibrosis: three rare blood cancers with difficult names 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.
“Patients with myeloproliferative neoplasms in the last year have been faced with a greater burden of isolation and care difficulties, as well as not having their legal rights recognized, as there is no clear information on these haematological cancers. – he comments Sergio Amadori, AIL National President – 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 own diagnostic-therapeutic path ”.
MIELO-Spieghi was born with this objective which, through multiple tools and initiatives, 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 there 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. A useful tool to undertake a path of improvement and dialogue with your haematologist.
“As President of an association that works every day alongside those living with myeloproliferative neoplasia, 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. – 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 “.
Needs that emerge every day on the Facebook page HONEY-Explain, opened in 2019 and grown thanks to the participation of a community that today includes over 23,500 fans. “From the constant dialogue with patients on the Facebook page HONEY-Explaini, there is a great need for clear information on these rare neoplasms, which often remain unknown even after diagnosis. – 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 and in this sense the Facebook page HONEY-Explain over time it has proved to be an instrument of great value and potential ”.
In addition to the Facebook page, the campaign provides patients and family members with a website www.alleatiperlasalute.it/mielo-spieghi/, information materials, virtual meetings with experts, a series of podcasts available for free on the main platforms and calls for creatives and videomaker 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.