Four thousand patients with amyotrophic lateral sclerosis (ALS). A fatal disease (the average life expectancy is between 3 and 5 years), which, in the words of patients, paralyzes you little by little, until the end. There is only one thing that does not deteriorate, the brain. The head continues to rule as always, with full consciousness, in a body that has become a prison.
“So much for the disease, which everyone is afraid of and just hopes it doesn't touch them. Neither him nor anyone in his family, the other great people affected. Because being in those skins would lead them to understand the great injustice that is being committed to them. Every day there are three new diagnoses, the same as deaths.
Those affected by ALS suffer one of the greatest injustices that can be experienced, that the health and social system of your country denies the minimum care that people who have no time to waste need,” explains Fernando Martín, spokesperson for the Confederation of Entities. of Amyotrophic Lateral Sclerosis (ConEla), an entity that has organized a monographic conference today on ALS and its consequences on patients and their families in the Congress of Deputies.
On this day, those affected by this very difficult disease will demand, once again, a law, promised and committed by all parties, but which remains dormant in the drawer of dreams (there were endless delays due to the presentation of amendments in the previous legislature and then it declined due to the calling of elections). It is not a law exclusively for those affected by ALS since patients with other degenerative pathologies would benefit from it, explains Martín.
The patients have presented a norm that includes the reform of other laws, such as dependency, patient autonomy or Social Security, among others, and that must ensure patients preferential access to specialized multidisciplinary services, equipped with technical and human resources necessary to meet their needs and guarantee, for example, access to home physiotherapy and 24-hour specialized care.
ALS patients, since it is a degenerative disease, although it progresses quickly, do not receive the status of disabled from the diagnosis, the system transferring the responsibility for specialized health care to family members and homes.
The text demands a reform of the general law on the rights of people with disabilities to expedite the recognition of disability for patients with ALS. And that, once the disease is diagnosed, the recognition of permanent disability is expedited. In short, put an end once and for all to a bureaucracy that prevents them from having access to aid and services that would allow them to live with dignity. “They have guaranteed us to die with dignity (euthanasia law), but not to live with dignity,” says one of those affected, Severí Gallach.
Above all, for those who have fewer economic and family resources, doomed to go through the unspeakable in a country that, supposedly, guarantees the care of each person (welfare state), as Juan Carlos Unzué reiterates on every occasion that he is ill. of ALS. The Navarrese Unzué has made his popularity available to those affected to achieve a decent life for all of them, regardless of their financial situation.
“What patients and their families experience is like a court of law, especially those who do not have resources, “who are abandoned by the hand of God,” says Severí Gallach, who has suffered from ALS since 2016 (“a rare bird, because In my case its progression is slower. Gallach has traveled from Sant Vicenç de Torrelló (Barcelona) to Madrid to attend the event at the Congress. He does it in the company of his wife, Anna, and his daughter Marina, in an adapted car (8,000 euros) and a folding crane to be able to move him (paid for with his money). Gallach is immobilized from neck to toe and needs help 24 hours a day, 365 days a year.
Despite this, it only has a physiotherapy service for 45 minutes a week (before Covid, I had two hours a week at the health center. But all that is over). And a caregiver who helps him for an hour in the morning and another in the afternoon, to get him up, shower him and put him to bed. From Monday to Friday. It is a municipal service that has a co-payment.
Again, this family, because they have resources, have been able to extend the hours of physiotherapy, and also home care, because Anna cannot do everything alone: “It's all day at all hours, from going to the bathroom, brushing her teeth, combing her hair. ", clean the snot... That's all." Anna had to stop working to be able to care for Severí.
This family has had to face the adaptation of their house without miserable public help and they went through what is not written to be authorized to put an elevator outside the house (it couldn't fit inside the house and they had to install it outside, on his land, something the municipal architect refused to do). All of this was paid for out of pocket because every time they requested aid (pages and sheets to fill out, with endless requirements), the answer was the same: they meet the requirements but the aid has run out.
And what to say about the wheelchair. When the public system grants the vehicle, it establishes a period of four years. The problem is that these patients require more advanced chairs in much less time due to the deterioration of their health status. “Everything is nonsense,” says Martín.
The Gallachs move forward as best they can and thanks to the help of private entities (and the ALS Unit of the Sant Pau hospital, a multidisciplinary team led by Dr. Rojo, to whom they are “infinitely” grateful for his humanity and affection). But many others affected cannot and live poorly.
One of the main demands is to end the pilgrimage to achieve permanent disability as soon as the diagnosis arrives. “It is unacceptable that it takes between 1.5 and 2 years when there is a clear diagnosis and what is needed is help from minute one. This disease does not allow time to be wasted. And while those papers are being arranged, you start to need a cane, a tricycle, physiotherapists... and you have to pay for that. But what if you don't have one? There are patients who, faced with the panorama, decide to die,” Gallach reiterates.
