Multiple myeloma is a rare disease, accounting for approximately 1% of all cancer diagnoses. But it is also a disease that cannot be underestimated, because it has a heavy weight on the lives of patients and a particularly high cost compared to other oncological pathologies, both for the Health Service and for the families who are affected by it. Estimating them was the survey “Journey into accessory costs incurred by patients and caregivers of Multiple Myeloma”, promoted by AIL – Italian Association against leukemia, lymphomas and myeloma – in collaboration with EMN Research Italy and the Center for Economic and International Studies and HTA (EEHTA) CEIS of Tor Vergata, the results of which were presented during a press conference.
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The report took into consideration direct and indirect economic costs for patients and caregivers, assessed on the basis of a questionnaire, created by a committee of Italian hematologists, which was distributed in print and online to patients belonging to the various hematology centers of the EMN Italy – European Myeloma Network Italy and their caregivers. The results showed a high impact of the disease, especially in terms of indirect costs: between reduction and abandonment of work activity, loss of working days and decrease in production capacity, an average of over 8,000 euros is reached every year. Direct costs, health and non-medical, are around 2,000 euros, mainly relating to expenses for personal assistance, the purchase of drugs and specialist visits. Significant outlays, therefore, which characterize multiple myeloma as a disease also characterized by high “financial toxicity”, both for patients and caregivers.
“Overall, the total annual costs for a patient with Multiple Myeloma are equal to 10,438 euros”, clarified Francesco Saverio Mennini, Director of EEHTA-CEIS, Faculty of Economics, University of Rome “Tor Vergata” and President of SIHTA, Italian Society of Health Technology Assessment. “The costs were closely related to the age of the patient: much higher for patients of working age (about € 11,886), lower for the older age groups, for which the indirect costs were due to the caregiver ( approximately € 2,628) “. To this data it is important to add that relating to the social security system. In fact, between 2014-2019 there was a 43% increase in the costs incurred by the social security system for ordinary checks. “If compared with the values relating to other oncological pathologies”, added Mennini, “Multiple Myeloma is second only to lung cancer, highlighting once more the impact both in terms of costs and disability that this pathology causes” .
Another important data that emerged from the survey is that relating to health migration linked to multiple myeloma. And in this case, fortunately, it is a positive fact: 52% of patients are able to get treatment in the reference center near their residence and do not need to move. The data confirms that, as far as blood cancers are concerned, the network of hematology centers is well distributed throughout the country. 42% of patients made short trips and only 6% went to another region with the need to find accommodation. Of these, 10% found free accommodation in the AIL accommodation houses.
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As we said, multiple myeloma is a relatively rare disease, despite being the second haematological neoplasm by incidence. In Italy there are an estimated 6,000 new cases and just over 35,000 people are living with the disease. The prevalence in the population is therefore a significant fact, and this is due to the therapeutic innovations of recent years which have considerably lengthened the average survival of patients. Despite everything, however, the disease still has a heavy impact on the daily life of patients, from the moment of diagnosis and later due to persistent pain and associated complications.
“The AIL Patients Groups have been carrying out for some time empowerment activities for patients and family members and advocacy activities aimed at protecting the rights of the haematological patient. A work that requires continuous commitment and has a very important value for our Association ”, explained Felice Bombaci, National Coordinator of AIL Patients Groups. “In addition to treating, however, we must take care of the ‘person’ and her needs, because life after a diagnosis of blood cancer must continue and patients have many other needs in addition to drugs, medical visits and tests. Our task is to support sick people beyond the medical and welfare aspects. A diagnosis of Multiple Myeloma involves social, work, economic problems. Family life continues and a pathology must not prevent the development of projects that each person has for his or her future. The advocacy activity completes the support offered by AIL and tries to convey these needs at the institutional tables “.