Reduction and abandonment of working activity, loss of working days and drop in production capacity which amount to over 8,000 euros of indirect costs for the patient each year. In addition, annual direct health and non-health costs of over 2,000 euros mainly due to expenses for personal assistance, the purchase of medicines and specialist visits. Multiple myeloma, the second hematological neoplasm by incidence, therefore not only involves a negative impact on the patient’s physical and psychological level but is characterized by ‘financial toxicities’ which translate into economic difficulties for both patients and caregivers. These are the main results of the survey ‘Travel in ancillary costs incurred by patients and caregivers of Multiple Myeloma’ promoted by AIL, the Italian Association against leukemia, lymphoma and myeloma, in collaboration with Emn Research Italy, the Center for Economic and International Studies and HTA (EEHTA) CEIS of Tor Vergata and with the unconditional contribution of Sanofi and Takeda. The goal is to provide reflection tools for clinicians and institutions to be able to optimize multiple myeloma management processes and the resources used, so as to be able to improve the quality of life of patients and their families and the efficiency of the system as a whole. The survey made use of a questionnaire developed by a Board of experts made up of nationally important hematologists, distributed in paper and online versions to patients belonging to the various hematology centers of the EMN Italy European Myeloma Network Italy and their caregivers .
Multiple myeloma has 6,000 new cases every year and there are just over 35,000 people who live with the disease and who are being treated or undergoing follow-up at university or hospital healthcare institutions. ‘Multiple myeloma is one of those pathologies for which the need to thoroughly investigate the needs and requests of patients is more pressing precisely because of the heavy ‘weight’ that this disease has on the lives of those affected and
This is why AIL has promoted this ‘journey'”, says Giuseppe Toro, National President of AIL. 53.1% of patients and 24.5% of caregivers are forced to abandon their jobs. “Myeloma survival – explains Mario Boccadoro, University of Turin, vice president of the European Myeloma Network (EMN) – which is still considered an incurable disease, has changed significantly in the last 5-10 years, increasing from three to five times. The patients we started treating 10 years ago have survivals of 8 to 10 years. Meanwhile, research has progressed and therapies have improved even further, with complete responses ranging from 20 to 70%; what will be the survival that we have managed to obtain with the results of the last two-three years we will see in 10 years”.
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