This Thursday the Delegate Commission of the System for Autonomy and Dependency Care with all the autonomous communities so that they can adapt their dependency systems to the provisions of the Royal Decree-Law that establishes measures to improve the quality of life of people with Amyotrophic Lateral Sclerosis (ALS) and other complex diseases.
Until last Friday, the Ministry of Social Rights had received contributions from 13 autonomies. All of them will be integrated into a new proposal that reflects the feelings of the Social Rights departments of the different communities and also of the associations of patients and families, who have made their contributions so that there is consensus on this aspect.
In this sense, associations that represent patients with complex non-ALS pathologies will influence whether the clinical criteria included are openthat is, that they include the plurality of pathologies that can be covered by it, and that they are established in collaboration with neurologists.
Patient organizations, including FundAME, ASEM Federation and Feder, remember that the law does not establish a closed list of diseasesbut it covers all those who meet clinical criteria.
And they also warn that co-payments can become a barrier to accessing rights, Therefore, they demand that, if established, they be limited to very high incomes. So, remember that Even minimal contributions can leave out families with a heavy care burden, especially when the disability originates in childhood, as occurs in 70% of people with rare diseases.
The delegate commission will guide the communities so that they can adapt their dependency systems to land “these new benefits that have been created”, facilitating “the procedures” that speed up “the aid arriving”, explained the Minister of Social Rights, Consumption and Agenda 2030, Pablo Bustinduy, on the 30th.
Before Thursday’s meeting, patients suffering from diseases or processes of high complexity and irreversible course, who have also been included by the Government to benefit from the aid of the Law, have expressed their fear that in the new step of autonomous development those affected may be left out of it.
It is the case of Cristian Lagowhich he has suffered since he was a child Spinal Muscular Atrophy (SMA), a genetic disease that affects motor neurons and is degenerative. In statements to LA RAZÓN, the spokesperson for FundAME shows his concern that in the new level of III+ dependency established by the Government, and which allows receiving 5,000 to 10,000 euros of monthly aid, a consensus is reached at the regional level where to access this aid it is necessary to overcome “clinical thresholds that may be too restrictive.”
Cristian indicates that “While it is true that with the diagnosis of ALS there are very defined times, very defined milestones and a very defined degree of support, in other pathologies this is not 100% the same.”. For example, within spinal muscular atrophy, within SMA, we find that many people who do not require assisted ventilation (one of the possible criteria that can be set) still die. Because? Because since they have so little physical capacity and lung capacity, if they contract a severe lung infection, they die,” even though a priori they do not need assisted breathing or have not undergone a tracheostomy.
But, also, They are people who need help 24 hours a day, “we need that human support, that is, physical supervision. Someone who is by our side so that if something happens they can help us.”such as assisting them if they choke while eating or the much-needed postural changes to avoid skin ulcers, but also to go to the toilet or attend a medical appointment, among many other cares. Cristian emphasizes that if, for example, the fact of having to receive respiratory ventilation is set as a criterion for receiving grade III+ and having access to 24-hour care, “we will never have 24-hour care. But we need it.” For this reason, he insists that “we need other pathologies to be taken into account” in the development of the text of this law.
“There will be people who have spinal muscular atrophy who, due to the stage of their illness, do not need 24 hours. Well, those people are not going to be with an assistant 24 hours a day because it is invasive. They are not going to want that. Although it may be a necessary resource for some, for others it is not. But for those who need it, do not give them an insurmountable clinical name for their illness.”he asserts.
Furthermore, another key concept to take into account is that the pathologies that can qualify for grade III+ Most of them are rare diseases.“that deep down we are talking about money but in reality we are few. And it is a matter of quality of life. “It is a time to give dignity to the people who need it most.”he claims.