Amyotrophic lateral sclerosis (ALS) is a very expensive disease. A patient in an advanced phase, who requires care in all his daily activities, must assume an annual cost of 114,000 euros, which falls to 94,000 euros in the intermediate phase, between fixed and recurring expenses.
The same day that the Congress of Deputies approved the law, the Luzón Foundation published the ‘Study of the costs of ALS for families in Spain” in which he analyzes the price to pay for suffering from this disease and which, in its early stages, already represents an annual expense of 37,000 euros for the patient.
With these numbers and 4,000 patients in Spainthe Luzón Foundation estimated that the budget item intended to cover only the direct costs currently borne by the families of ALS patients should be between 184 and 230 million euros per year. And as the disease progresses, the person with ALS needs more and more support and help to carry out activities of daily living.
In most cases and regardless of the type of ALS they suffer from, the patient becomes totally dependent on specialized assistance and ongoing care. From the moment of diagnosis, the patient with ALS becomes a chronic patient, at home, and the home is the place of care with sporadic visits to hospital centers, due to lack of space, public or private, which welcomes them.
The study denounces that the residence system does not consider attention to the profile of patients with ALS and currently there are no places available for these patients in Spain, so home care is the only alternative.
The survival of people with ALS is in most cases the responsibility of the family due to the inability to bear the costs of professional care. The average life expectancy of a person with ALS is three to five years from diagnosis.
Currently the origin of the disease is not known, there is also no treatment or cure. Research is scarce and prevalence is based on estimates.
In Spain, it is estimated that every year 900 new cases are diagnosed, which gives an incidence of 1.85 cases per 100,000 inhabitants, although the Luzón Foundation estimates that the incidence is much higher.
To make data more accurate in the coming years, the foundation launched the National ALS Patient Registry in collaboration with the Carlos III Health Institute. This register, he explained, will promote fundamental and clinical research, encourage decision-making for adequate health planning and correct distribution of social, health and research resources.
