Four thousand patients with amyotrophic lateral sclerosis (ALS). A fatal disease (the average life expectancy is between three and five years), which, in the words of the 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 turned into a prison.
“So far the disease, a disease that everyone fears and that they just hope it doesn’t touch them. Neither to them nor to anyone in the family, the others greatly affected. Because putting themselves in that shoes would lead them to understand the great injustice that is being done to them. Every day there are three new diagnoses, the same as deaths. Those affected by ALS suffer one of the worst injustices that can be experienced, that the country’s health and social system denies the minimum attention needed by people who have no time to waste”, explains Fernando Martín, spokesperson of the Confederation of Entities of Amyotrophic Lateral Sclerosis (ConEla), an organization that has organized a monographic conference today on ALS and the consequences for patients and families at the Congress of Deputies.
On this day, those affected by this very difficult disease will once again demand a law, promised and committed by all parties, but which remains asleep in the drawer of dreams (there were countless delays due to the presentation of amendments in the previous legislature and then lapsed due to the calling of elections). It is not a law exclusively for those affected by ALS, as patients with other degenerative pathologies would benefit from it, explains Martín.
The patients have presented a rule that includes the reform of other laws, such as that of dependency, of patient autonomy and that of Social Security, among others, and that should ensure patients preferential access to specialized multidisciplinary services, equipped with the technical and human resources necessary to attend to their needs and guarantee, for example, access to physiotherapy at home and specialized care 24 hours a day.
ALS patients, as it is a degenerative disease, although it progresses rapidly, do not receive the status of disabled from diagnosis and the system transfers the responsibility of specialized health care to family members and homes.
The text calls for a reform of the general law on the rights of people with disabilities to speed up 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”, points out one of those affected, Severí Gallach.
Above all, for those with less financial and family resources, destined to go through the worst in a country that supposedly guarantees care for each person (the welfare state), as Juan Carlos Unzué, a patient with ALS, reiterates every time what can Navarrese Unzué has put his popularity at the disposal of those affected to ensure that they have a dignified life, apart from the financial situation.
“What the patients and their families live is like a trial court, especially those who have no resources, who are abandoned by the hand of God”, points out Severí Gallach, a patient with ALS since 2016 (“a rare grandmother, because in my case the progression is slower”). Gallach traveled from Sant Vicenç de Torelló (Osona) to Madrid to attend the day at the Congress. He went there with his wife, Anna, and his daughter, Marina, in an adapted car (8,000 euros) and a folding crane to be able to move it (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, he only has physiotherapy service 45 minutes a week (before covid, he had two hours a week at the health center. But all that is over). And a carer who helps him for one hour in the morning and another who helps him in the afternoon, to get him up, shower him and put him down. From Monday to Friday. It is a municipal service that has a co-payment.
This family, because it has resources, has been able to extend the hours of physiotherapy again, and also of home care, because Anna is not able to get by on her own: “It is all day at all times, from going to the toilet even brushing his teeth, combing his hair, blowing his nose… That’s all.” Anna had to stop working to attend to Severí.
This family has had to deal with the adaptation of their home without a miserable public aid and they have experienced what is not written so that they were authorized to put an elevator outside the house (it didn’t fit inside the house and they had to install something outside, on his land, which the municipal architect refused). All paid out of pocket, because every time they applied for aid (sheets and sheets to fill out, with an infinite number of requirements), the answer was the same: they meet the requirements, but the aid has run out.
And what should we say about the wheelchair? When the public system grants the vehicle, it sets a time of four years. The problem is that these patients need more advanced chairs in a much shorter time due to the deterioration of their state of health. “Everything is nonsense”, says Martín.
The Gallachs carry on 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 humanity and affection). But many others affected cannot reach all this and live badly.
One of the main claims is to put an end to the long road to achieve permanent disability, so the diagnosis arrives. “It is not acceptable that it takes between a year and a half and two 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 the papers are being sorted out, you start needing a cane, a tricycle, physiotherapists… And you have to pay for that yourself. But what if you don’t have one? There are patients who, given the situation, decide to die”, repeats Gallach.
