The Spanish Federation of Diabetes (FEDE) has asked the Government to withdraw the draft royal decree intended to regulate the benefit for the care of minors with cancer or other serious illnesses (CUME) and to draft a new regulation in which families, patient associations, and healthcare professionals truly participate.
The organization admits that the draft incorporates advances long demanded by affected households, such as the extension of renewal periods or the inclusion of new pathologies. However, it warns that, in its current wording, the accreditation and supervision system could, in practice, limit access to aid and compromise its future maintenance.
FEDE emphasizes that type 1 diabetes in childhood illustrates how the new rules could restrict access to the benefit, with a direct impact on the quality of life of both the minor and their family environment.
According to the federation, there are elements in the text that are "incompatible" with a regulation based on the real need for care. Along these lines, it stresses that "the right cannot be measured by the clinical, but by the real need for care."
The project makes protection conditional on the existence of clinical or hospital care, but FEDE recalls that a child with type 1 diabetes requires "direct, continuous, and permanent care" that does not fit these parameters.
It also criticizes the requirement that renewals be signed by a specialist instead of a Primary Care physician when, in its opinion, "the latter is, in many cases, the one who best knows the minor's daily evolution."
The entity also questions that school hours are taken into account as a criterion for assessing the aid, considering it an "error," since attending school "does not eliminate the need for care."
The draft contemplates the extinction of the benefit if the beneficiary or the child undertake training practices, or when the other parent becomes incapacitated. For FEDE, these decisions "penalize training" and "multiply the fragility of families in the most difficult moments, instead of protecting it."
The federation also denounces that the text offers no response to cases that remain "beyond the age limit". It recalls that numerous young people with serious chronic pathologies continue to need support once they have passed the foreseen age limit. Therefore, it demands the implementation of mechanisms that "prevent these families from being left without any coverage".
Drafting of allegations with the support of families
Given this scenario, the Spanish Diabetes Federation insists on the withdrawal of the project and on the opening of a new regulatory process that places at the center the real need for care of each minor, accredited by the professional of the public health service that attends to them, and not by criteria such as age or school hours.
FEDE will present its allegations within the public hearing period, in coordination with its member entities and with the advice of affected families and individuals, with the aim that no parent is forced to choose between caring for their child and keeping their job.