Five years is the upper range of the average life expectancy for a patient with amyotrophic lateral sclerosis. Juan Antonio Mangudo has just passed this rubicon at 34 years old. Receive in your home with large windows, well renovated. He bought it before ALS started showing up in his body to eventually become independent. “Look, it was about living my life and seeing what happened next.” What happened next was a finger he couldn’t lift, inexplicable falls from the bike and, after numerous tests, a diagnosis that left him speechless for a week.
Today he can and wants to talk, but he stopped working – he was a computer engineer – because he has serious limitations in the movements of his arms, hands and legs. He uses a wheelchair and needs help with all activities of daily living, from eating to going to the toilet. His mother, whose name is Tita and who primarily cares for him, moved to live with him. Every morning, he goes to the Isabel Zendal Hospital (Madrid) to undergo physiotherapy, speech therapy and occupational therapy sessions. None of this was the case two years ago, when the development of the ELA law began, which was approved this Thursday unanimously by the Congress of Deputies.
It’s been two and a half years. “Every day the law is repealed, people die. And now, those of us who are still here and who experience this approval with enthusiasm know that there are dear people who are no longer here to see it,” laments Mangudo. ALS is incurable, but the law guarantees him and the 3,500 people diagnosed with the disease in Spain an “improved quality of life”. This translates, according to the final wording, into 24-hour care in advanced stages, a streamlining of dependency procedures and better contribution conditions for caregivers who have left their productive employment.
Jorge Murillo, a 38-year-old telecommunications engineer and founder of the Juntos Venceremos ELA association, moves his eyes. She faces the ninth year of diagnosis with two live-in caregivers who cover the entire week in shifts. She has to pay both salaries out of her own pocket, around 3,000 euros per month, because the benefit which corresponds to her for the maximum level of dependency which she has recognized “is not even sufficient to pay social security for an assistant”. caregiver”.
If he can cope, he explains, it is because his family supports him. “For me, the law would mean lower expenses and would save me from the physiotherapy I receive at home,” he explains, thanks to a system that allows him to write using the movement of his eyes. But for now, the rule leaves him “cold”, he admits, because until he sees it, he won’t believe it.
Among the sick, there is a lot of joy, but also skepticism about how the law will be applied in each of the autonomous communities. They fear it will be uneven or staggered for a disease that doesn’t have time. “The ALS law did not start three years ago as everyone believes, it began to germinate on November 19, 2016 during the V march for ALS, where we read before the Ministry of Health a statement that I had prepared addressed to the minister at the time. Dolors Montserrat. The following year, I took the first draft written on my cell phone to the deputy of Ciudadanos, Francisco Igea,” Murillo recalls. Initiatives were then presented to the Madrid Assembly and finally reached Parliament in 2022.
Processing times have been extended and with the June 2023 election, the bill is dead. Meanwhile, Juan Antonio had to buy a new chair and a suitable car. 80,000 euros. You know that at some point you will need an adjustable bed or lift. Normally, patient associations lend these items and then return them. The list of what Jorge needs for his daily life is endless: a respirator, a secretion aspirator, the cough assistant, the pulse oximeter… These devices are covered by public health; as well as syringes for feeding and equipment for dressings (gloves, gauze and serum). Lying down all the time hurts the body.
Things began to change on February 20, when former soccer goalkeeper Juan Carlos Unzué criticized MPs for their delays. Then progress began to “run like a Formula 1 car”, recalled in this interview the president of the confederation of patient associations ConELA, Fernando Martín. With the reform of the Constitution aimed at removing the word “disabled”, this norm is the only one which has generated the consensus of all parliamentary groups.
Raquel Estúñiga, from the AdELA association, knocked on the door of all the administrations that could do something to improve the situation of the sick: writings to Congress, advice on projects, interventions in institutions… She lives with her mother, 72 years old. years old, who also takes care of her daughter every other week.
“I hope that my life will improve, but first we will have to clearly define what budget they are going to provide the law and what criteria are subject to which benefits. For example, to this day I do not have a tracheotomy, but I need specialized care 24 hours a day,” explains in writing Estúñiga, who answers the questions of this medium with the same system as Jorge: with the movement of the pupils. She has a full-time caregiver and is distressed to see how her savings are dwindling month by month. “The salaries come out of my pocket, mysteriously I am charged a percentage of the medicines I take, some have to be paid in full, and any breakdown of the wheelchair is not covered,” he laments.
Everyone is clear that “the fight does not end here”. It is now time to scrutinize the application of the law, to control the public authorities so that what is written and approved is founded. It remains to specify the financing and the regulations which specify its application. Patient organizations, such as conELA and the Luzón Foundation, estimate that this will require an annual budget of around 230 million euros. Also on the horizon is the reform of the promotion of personal autonomy and care for people in a situation of dependency (known as the dependency law) that the Ministry of Social Rights wishes to promote. But since Thursday, anger has left space for the hope of living with sufficient resources for the time they have left. “When I look at the future, I invent it, even if I know that nothing can cure me. The rest of the time I live in the present,” says Mangudo.
