Costs for assistance, medicines and specialist visits are added to lost working days and reduced production capacity. 53% of the sick and 24.5% of family members had to leave their jobs
Reduction and abandonment of working activity, loss of working days and drop in production capacity which amount to over 8 thousand euros of indirect costs for the patient every year. In addition annual direct medical and non-medical costs of over 2 thousand 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 a physical and psychological level for the patient but is characterized by financial toxicities that translate into economic difficulties for both patients and caregivers. These are the main results of the survey Journey into the ancillary costs incurred by multiple myeloma patients and caregivers, promoted by the Italian Association against leukemia, lymphoma and myeloma (Ail), 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, which aims 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, as well as the efficiency of the system as a whole.
Patients and family members forced to leave work
The journey between the direct and indirect economic costs of patients with multiple myeloma and their caregivers was carried out through a questionnaire developed by a group of experts made up of nationally important hematologists, distributed in paper and online versions to patients belonging to the various Centers of hematology of EMN Italy – European myeloma network Italy and their caregivers. Myeloma is one of those pathologies for which the need to thoroughly investigate the needs and requests of patients is more pressing precisely to the strong “weight” that this disease has on the lives of the people affected and their families. This is why Ail has promoted this “journey” – he says Joseph Bull, national president of Ail —: the data that emerged from the survey will be a reason for careful reflection on our part, by clinicians and patients. In particular, one figure struck us: the impact of the disease on the work activity of patients and caregivers. 53.1% of patients and 24.5% of caregivers are forced to leave their jobs. We believe it is necessary to intervene in this area with social policy actions to mitigate the haemorrhage of resources to the detriment of the quality of life of patients and caregivers.
Costs
Multiple myeloma characterized by a high cost of the disease compared to other types of cancer for both the patient and the system. Overall, the total annual costs for a patient were estimated to be 10,438 euros, of which 78% related to indirect costs, due to absenteeism and presenteeism, and 22% to direct health and non-health costs — illustra Francesco Saverio Mennini, director of EEHTA-CEIS at the University of Rome Tor Vergata and president of the Italian Society of Health Technology Assessment —. The costs were strictly related to the age of the patient: much higher for patients of working age (about 11,886 euros), lower for older age groupsfor which indirect costs were due to caregiver (about 2,628 euros). To this important data add that relating to the social security system. Between 2014-2019 been registered an increase in the number of beneficiaries of ordinary disability allowances (+35%), accompanied by a reduction in the number of beneficiaries of disability pensions (-3%). This resulted in a 43% increase in the costs incurred by the social security system for ordinary cheques. If compared with the values relating to other oncological pathologies, myeloma second only to lung cancerhighlighting once again the impact both in terms of costs and in terms of disability caused by this pathology.
The therapies
In Italy they are estimated about 6 thousand new cases per year and there are just over 35,000 people who live with the disease and who are undergoing treatment or follow-up at university or hospital care institutions. Thanks to the many advances made in therapies, patients today are living longer: Survival – he explains Mario BoccadoroUniversity of Turin, vice president European myeloma network (EMN) — has changed significantly in the last 5-10 years, increasing three to five times. The patients we started treating 10 years ago have survivals of 8 to 10 years. Meanwhile, research has continued 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. Currently for younger patientsor who are in good health, with no comorbidities and under 70, autologous transplantation is the therapy of choice. The transplant is performed after a preparation with drugs that serve to reduce the number of malignant cells (induction): they can be used four-drug combinations which make the answer more and more profound; after transplantation, he is followed by maintenance therapy with an oral drug. For older patients with associated pathologies, the latest generations of monoclonal antibodies, proteasome inhibitors, immunomodulators and cortisone.
The impact of the disease
Multiple myeloma has a heavy impact on patients’ daily lives from the moment of diagnosis and because of persistent pain and some associated complications. The patient undergoes a first, important shock at the time of diagnosis: being told a diagnosis of myeloma, which today is curable but still incurable, very distressing – he underlines Daniel Derudas, medical director in the Hematology and Bone Marrow Transplant Center of the Armando Businco regional reference cancer hospital in Cagliari —. Subsequently, since the disease affects several organs, the patient suffers the consequences in the long run. Skeletal involvement is usually widespread with bone lesions, fractures and of course persistent pain, the aspect that most affects everyday life and the psyche of patients and which has a very significant impact on the quality of life. Patients can lose autonomy and tend to need more and more others to carry out some normal activities such as going to the hospital for check-ups, getting out of bed, shopping. All of this undermines self-esteem and self-confidence.
Hospitals close to home
A positive fact also emerges from the survey: 52% of patients are able to be treated in the reference center near their residence and do not need to travel. The network of hematology centers is therefore well distributed throughout the country. 42% of those questioned made short journeys and only for 6% going to another Region meant the need to find accommodation: 10% of the latter found free admission in the AIL lodging houses. Ail has always been close to patients and families, supporting scientific research and offering support and assistance services in the area – recalls the president Toro -: transport (2,221 solidarity trips, 9,054 transports to and from the hospital), home assistance, psychological support, free reception in the accommodation houses for patients and caregivers (2,304 people hosted in a year); all essential activities to reduce indirect costs and help the most vulnerable families to counter the expenses that weigh down the burden of the disease. Lastly, the Ail Patients groups have been carrying out activities of empowerment for patients and family members and activities aimed at protection of the rights of the hematological patient — conclude Happy Bombaci, national coordinator of Ail Patient groups —: a job that requires continuous commitment and has a very important value for our association. In addition to providing therapies, however, it is necessary take care of the “person” and his needs, because life after a diagnosis of blood cancer must continue and patients have many other needs than medications, doctor visits, and tests. Our task is to assist sick people beyond the medical and welfare aspect; a diagnosis of multiple myeloma entails social, work, economic problems. Family life goes on and a pathology must not prevent the development of plans that each person has for their future.
December 21, 2022 (change December 21, 2022 | 1:18 pm)
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