Elma Saiz traslada los avances del borrador del reglamento de la prestación para el Cuidado de Menores afectados por Cáncer u otra Enfermedad Grave

The Minister of Inclusion, Social Security and Migration, Elma Saiz, reiterated the Government’s commitment to improving the provision for Care of Children affected by Cancer or another Serious Disease (CUME) in the meeting she has held in recent days with the associations of relatives ‘CUME Nos Une’, ‘ASFACUME’, ‘Caretaker Lazarillo’ and the Spanish Federation of Childhood Cancer Families, in an open and permanent dialogue process that she has maintained with them in the processing of the draft new regulation of this Social Security Benefit.

The minister has transmitted to them the progress in the processing of the new regulation and has confirmed that several of the proposals made in public hearings have been incorporated into the project, after a transparent process of citizen participation, which improve and enrich its text before proceeding with the mandatory procedures for its final approval.

According to Elma Saiz, “this is a draft regulation that is born from the accumulated experience, the legal reforms approved in recent years and the demands raised by the families themselves, which already advised an overall review”. “No one is going to lose the benefit, it is a measure that shows the Ministry’s firm will to expand rights, never to reduce them,” he stressed.

The new regulation in progress, which has received around 1,200 contributions in the public hearing process, aims to improve the one currently in force - dating from 2011 - as well as to clarify some of its aspects and give more legal certainty to the beneficiaries. The draft of the new regulation will follow the mandatory procedures for its future approval.

It should be remembered that the scope of application of this economic benefit has expanded considerably since 2018. The amount allocated to this benefit has gone from 84 million euros to 355 million euros in 2025, which means an increase in six years of 323%, much higher than the increase experienced by the rest of the Social Security benefits.

New comprehensive regulatory framework

The project proposes a new complete regulatory framework, which completely repeals Royal Decree 1148/2011, with systematic and coherent regulation that integrates into a single body of regulations all the improvements that have become necessary over time. Its fundamental aspects are:

• The updating of the concept of protected situation, to adapt it to current medical practice more in line with the evolution of medical knowledge, health organization and care needs.
• The recognition of the new family realities, through better regulation of exclusive coexistence, shared coexistence and alternation in the perception of the subsidy, especially in the cases of nullity, separation and divorce, so that protection reaches where it should arrive.
• A system more flexible and adjusted to the clinical reality of these diseases in the review of the duration and extension regime of the subsidy, with extension of deadlines and improvement of the scheme of extensions (before it was 2 months, the first, and then every 4 months; whereas now: the first is at 6 months and the successive ones every 8 months).
• The strengthening of medical accreditation and monitoring mechanisms. The new text integrates into the standard the official model of medical declaration that until now has been regulated separately and strengthens its content: section A includes an assessment of the needs of direct, continuous and permanent care, according to the type of therapies and care that the child needs, and then section B establishes an open list of other reasons why the physician understands that the child needs other specific care.
• In addition, the monitoring procedure provides for the incorporation every two years of a report of the medical inspection of the Public Health Service, of a complementary nature, which guarantees a more uniform application, without introducing disproportionate administrative burdens for the beneficiaries, in order to strengthen objectivity, homogeneity and transparency in management.
• The adaptation of the benefit to the reality of self-employed persons. The new system of contributions for real income required an express clarification on the regulatory basis during the receipt of the subsidy, as is demanded by self-employed persons, so that the provisional contribution bases that are taken into account during the receipt of the subsidy will be considered definitive, without being subject to annual regularization of their quotas.
• Updating the list of serious diseases that allow access to the service. New pathologies are incorporated according to the available medical and scientific evidence, including autism spectrum disorder and Poirier-｟｠ neurodevelopment syndrome. And, in addition, a regulatory path is enabled so that this list can continue to be updated as scientific knowledge advances.

Improvements introduced after public participation

Thanks to public participation and the different meetings held by the Ministry with associations and platforms of affected people, society’s concerns have been known at first hand to improve the normative project, make commitments for improvement in some aspects that may be more confusing and offer greater security and protection to the families that need it most.

The main aspects incorporated into the text after this participatory process are the following:

• The possibility that, in the extensions, the primary care doctor of the Public Health Service may also issue the optional medical report. The initial text only provided for it to be issued by the specialist doctor.
• The compatibility of the CUME benefit with the performance of training practices by the child with cancer or another serious disease.
• The improvement of the application form, which corrects the aspects that at some point could have generated confusion or insecurity.
• A better definition of care in the case of situations assimilated to long-term hospital admission.
• The inclusion on the Social Security website of a specific space to facilitate dialogue.