Efe
Updated Tuesday, February 20, 2024-13:04
Health Obtain genetic markers to treat ALS through a blood test
Plugged in to live María, José Vicente and the 302,000 electrodependents without a discount on the electricity bill
Patients with
Amyotrophic Lateral Sclerosis (ALS)
"do not have time" and the disease they suffer from poses
unresolved social and health needs
. This Tuesday, in Congress, the ConELA association has denounced "precipitous deaths" of people with this disease due to lack of money for their care.
In a few parliamentary days to demand, once again, a law that guarantees care for those affected, the spokesperson for ConELA, former soccer player and patient, Juan Carlos Unzué, has made it clear that he feels privileged: "My economic situation does not "It's going to condition my final decision on when to die, but it does affect many of my colleagues, and that's not fair."
At least
a dozen patients
have attended these sessions to make visible with their presence the limitations of a neurodegenerative disease that requires continuous expert care for 24 hours, in addition to physiotherapy, psychological treatment, speech therapy or occupational therapy, specific treatments that do not arrive because they do not There are enough budget items.
And, according to pulmonologist Francisco Jerez, from the San Cecilio University Clinical Hospital (Granada), "a patient with ALS cannot be allowed to
have a premature death sentence
for being cut off from health resources."
This pulmonologist has pointed out that the volume of patients who need this care and these technologies "is not so large as to cause a loss to the health system. Another thing is that there is a desire to do it properly."
Jerez has stressed that the survival of patients with ALS increases significantly when
non-invasive ventilation
and tracheostomy ventilation are correctly applied. "Doing it right means making expert decisions and care," she said.
According to this pulmonologist, a patient with ALS "only wants to die if he is alone or without support" and he has urged those patients with extreme suffering not to request euthanasia, "to ask for a change of doctor because many things can be done ".
For his part, the head of the pulmonology service at the Valencia Clinical Hospital, Emilio Servera, has insisted on the lack of training of professionals: "People with ALS need technology and affection, they have the technology provided, but expert hands who operate those machines, no.
"And affection is not compassion," he said. "People with ALS need fewer words and more ongoing expert care at the right times," she adds.
For this reason, he stressed, it is necessary to legislate so that people with ALS have
the same basic rights
that other citizens already have, "and that in this way they are incorporated into the welfare state, from which they have been excluded."
A patient participated in the event: Esther, 43 years old, a retired teacher due to an ALS diagnosis that occurred three years ago.
This patient, with a 79% disability and responsible for three minors, has reported that she only has a part-time non-professional caregiver, which is what she can afford, and a monthly aid of 140 euros to alleviate the needs she causes. her illness.
Esther has demanded expert care and has assured that if the patients were properly cared for, from the beginning, "with pertinent physical rehabilitation that is denied based on the diagnosis on the grounds that they are irrecoverable patients", survival would increase significantly. .
With these demands for the approval of a new bill, after the processing of the previous law declined when the chambers were dissolved due to early elections, and after 41 postponements in a year and a half, the day has concluded with the presentation of a manifesto in which the abandonment of patients has been denounced and it has been emphasized that "ALS does not wait, ALS law now! Not tomorrow, today!"