(Adnkronos) - Più di un terzo dei pazienti con miastenia grave è costretto ad assentarsi dal lavoro, più di 1 su 10 ha dovuto rinunciare a lavorare e un paziente su 3 ha bisogno del supporto di un caregiver. È quanto emerge da ‘MyRealWorld MG’, il primo studio real world su scala globale dedicato all’impatto sociale e produttivo della miastenia grave su pazienti, familiari e caregiver. Combinando i risultati di questo studio con quelli dello studio Adapt, il più ampio trial clinico condotto sui pazienti con miastenia grave, Argenx ha presentato oggi a Milano una nuova pubblicazione, con la quale si evidenzia come terapie innovative, tra cui efgartigimod alfa, oltre a risultare clinicamente efficaci possono ridurre la perdita di produttività e migliorare la qualità di vita.
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00:00The serious myasthenia is a rare disease, autoimmune and chronic, which in Italy affects
00:08about 17,000 people.
00:10To highlight the profound social and productive impact of the disease on family and caregiver
00:16patients, the first study was conducted in Real World on a global scale, MyRealWorldMG.
00:21Promoted by the Association of Patients and supported by Argenix, the study analyzed
00:26the data of more than 2,000 patients, with a large participation from Italy.
00:56The second aspect is that there is a large involvement of caregivers, who are 95% family
01:11members.
01:12Therefore, the economic losses of both patients and caregivers are added up.
01:19It has been estimated that in Italy we had a total reduction of 11,000 euros per year
01:27per family and that the vast majority of this loss is linked to a net loss of the patient
01:35and then also of the caregivers.
01:37The photograph taken by the study highlights the difficulties faced by people who live
01:42with this pathology, mainly because of the symptoms it carries.
01:47It is a disease characterized by muscle fatigue, i.e. symptoms worsen with effort and improve
01:54with rest.
01:55It is a disease that can involve several muscle districts, it is an heterogeneous disease,
02:02it can involve the extraocular muscles, giving rise to diplopia, double vision, palpebral
02:08ptosis, the muscles that are important for phonation, chewing, therefore giving difficulty
02:13in speaking, chewing, but also in swallowing, or it can give fatigue to the arteries.
02:19In the most severe event, it is when the muscles are involved in the respiratory tract, in this
02:25case the patient can go into respiratory insufficiency and may require mechanical ventilation
02:31support and intensive care.
02:33Combining the results of this study with those of the ADAPT study, the most widespread
02:38in Italy, ARGENX has presented a new publication in Milan, with which it stands out as the
02:44new therapies, including GARTIGIMOD Alpha, developed by ARGENX, in addition to being clinically
02:50effective, can reduce the loss of productivity and improve quality of life.
02:55Why do we make this commitment?
02:57On the one hand, there are therapeutic areas with a clinical need that is still unsatisfied,
03:01and where for several years there has been a lack of pharmacological innovation.
03:05On the other hand, there are those areas where the social impact of the disease is extremely
03:10high.
03:11We sometimes make the methodological mistake of thinking that in these diseases the relationship
03:15is one-to-one between disease and disease, but the numbers show how the social impact on
03:21caregivers, on the relatives of these diseases, is much higher.
03:24So from here also our commitment is to try to improve the quality of life not only of the
03:28patient, but also of the relatives.