pic_20240322_Aportaciones de AELMHU

Aportaciones al PD de la CAM

AELMHU has sent to the Community of Madrid its contributions to the Public Consultation prior to the draft Royal Decree regulating early care in the Community of Madrid.

The Association is made up of 24 pharmaceutical and biotechnology companies, with a strong commitment to research, develop and market innovative therapies to improve the quality of life of patients suffering from rare and ultra-rare diseases. All of them carry out important research work for the development of drugs capable of treating this type of rare diseases. These diseases usually develop in childhood or infancy and, because they are mostly genetic and do not have as much evidence or clinical studies, they have a lower life expectancy. In view of these facts, effective and early diagnosis is vital to guarantee the level and quality of life of patients.

In this line, the Association appreciates the fact that the Autonomous Community of Madrid is undertaking a firm commitment to comprehensive care for children under six years of age with developmental disorders, with disabilities or at risk of disability and/or dependence, as well as their families, which requires the active and responsible participation of the different administrative units with competencies in Health, Education and Social Services.

For this reason, AELMHU proposes to ensure rapid and equitable access to disease diagnosis, which is a fundamental pillar in the universalization of early care. It is essential to reinforce in the decree the coordination between health care levels (Primary Care - Hospital) for the detection and follow-up of these patients as soon as possible. It also requests the inclusion of as many rare diseases as possible in the neonatal screening program as a common tool for early and accessible detection, while this early care process should prioritize all children diagnosed with a minority disease that is chronically debilitating and define how their comprehensive follow-up should be carried out.

In this line, the Association also recommends the inclusion of actions to promote neonatal screening, within the competencies of the Technical Commission of Early Intervention of Madrid.

Consult the complete text sent to the CAM.