More than 400 years of life lost in Portugal – Coimbra News
More than 400 years of life have been lost to premature death or disability due to Spinal Muscular Atrophy (SMA) in Portugal, according to the results of a study referring to 2019 data that is presented on Saturday in Lisbon.
The “Study of the Socioeconomic Impact of AME in Portugal” was developed by the Center for Evidence-Based Medicine Studies of the Faculty of Medicine of the University of Lisbon.
The analysis concludes that of the 403 years of life lost, 86% were due to premature mortality (over 340 years) and 14% to disability.
In individual terms, the burden of Spinal Muscular Atrophy is very significant, which is also reflected in the years of life lost by each patient. As an example, a child with SMA type 1 lives, on average, the equivalent of 4.8 months without disability in a year of life.
The study concluded, the prevalence of SMA in Portugal was estimated, according to 2019 data, in 147 patients with type 1, 46 with type 2 and 83 with type 3.
SMA is classified into three main types, mainly at the age at which the first symptoms appear. Type 1 develops in babies younger than six months; type 2 manifests in children aged six to 18 months and type 3 may not be evident until childhood or adolescence.
The same study will be presented at the Conference “Caring in Society in Spinal Muscular Atrophy”, it also demonstrates that the economic impact of the disease is significant, despite its prevalence.
One SMA patient represents a total cost of 114 thousand euros per year. The global cost of treating the disease in Portugal was, in 2019, 16.8 million euros, with 42% of this amount corresponding to the most severe form of the disease (type 1).
There are almost 17 million, 1.6 million of which correspond to direct non-medical costs, such as assistive devices, home care, social support or informal caregivers.
Even so, comparing with other countries, and with the cost of the modifying history in the natural history of the disease, the average cost per patient in Portugal is one third of the annual cost in Germany and an example of 17% of the cost in Spain.
The study was carried out in 2020/2021, but reflects data from 2019. Of course, the reality is current and the current numbers will differ, both in the number of as well as the impact of the economic cost of the disease.