Amyotrophic lateral sclerosis (ALS), a neurodegenerative disease, not only impacts the physical and social lives of those who suffer from it but also represents a significant financial burden. According to Helena Pérez, a neurologist at the University Hospital of Canarias (HUC), the average annual cost per patient and family amounts to 50,000 euros. This translates into a minimum expenditure of 150,000 euros from diagnosis to cover care, home adaptations, and specialized support.
Given that the average life expectancy for an ALS patient is between three and five years, the total cost can reach 250,000 euros, depending on the individual progression of the disease. The first year, with an approximate cost of 30,000 euros, the patient still retains some autonomy, but the need for resources increases progressively.
The disease causes rapid disability, requiring assistance for basic needs and environmental modifications. Adapting spaces like bathrooms and stairs, along with acquiring support aids such as wheelchairs or adapted vehicles, becomes essential. Furthermore, it is common for other family members to have to leave their jobs, which can significantly reduce household income and raise the average annual cost to 100,000 euros in advanced stages, creating a "family and social earthquake."
Despite the existence of aid, such as those associated with the new dependency grade III+, which offers financial benefits of up to 9,000 euros per month, these do not always cover the full extent of the expenses. In this context, organizations like Teidela play a crucial role in facilitating life for patients and their families, whose support is fundamental given the magnitude of the challenge.
In the Canary Islands, it is estimated that around 130 people suffer from ALS, a figure that remains relatively stable because new diagnoses are offset by the number of deaths, a distinctive characteristic of this disease compared to other neurodegenerative conditions.
Currently, the only approved drug is riduzole, which increases life expectancy by three to six months. However, Molefy Pharma, a spin-off from the Arquimea Research Center in Tenerife, is developing a new drug, AP2, with the potential to chronify the disease and significantly extend patients' lives. This is currently in the initial phase of safety and pharmacokinetic studies in healthy volunteers, with positive preliminary results.
