We asked Francisco Luzón, the president of the foundation which bears his name, what he considers is needed most in the fight against ALS. This is what he said: “The Minister for Health wants to set up a National Plan against ALS, which is very positive news for those of us who suffer from it. In the name of the Luzón Foundation, I will list the five things which we believe should be a priority:
First: that every ALS patient receives the same treatment no matter which region of Spain they live in.
Second: modify the law of dependence for people with this illness, which isn’t like others such as cancer or heart conditions. It often takes over a year for certain needs to be met. Some patients have died before receiving the help they need.
Third: improve treatment for patients in their home, where they spend 90 per cent of their life.
Fourth: create specialist units for ALS in a few hospitals where patients receive multidisciplinary clinical treatment.
Fifth: start investing in research now, taking advantage of the investigative talent which already exists. Spain is low down the list in this field among developed European countries.”