The Spanish Association of Orphan and Ultra Orphan Drug Laboratories(AELMHU) has presented its contributions to the Draft Order updating Annexes I, II and III of Royal Decree 1207/2006, of October 20, which regulates the management of the Health Cohesion Fund.
From AELMHU we value positively the role of the Health Cohesion Fund as a structuring instrument of the National Health System (SNS), aimed at ensuring equity in access to health care services throughout the national territory. In the context of rare diseases, this fund acquires strategic relevance by allowing the financing of actions that transcend the isolated care model, favoring inter-territorial coordination, the development of knowledge networks and the implementation of structural projects that have a direct impact on the quality of life of patients.
RECOMMENDATIONS
We consider that the strengthening of the Health Cohesion Fund should be accompanied by a clear definition of its lines of action with a finalist character and that the hospitals to which the funds will reach should invest in the CSUR:
- Funding for clinical and genomic data interoperability projects, in line with European standards.
- The promotion of national registries and follow-up platforms for rare diseases, allowing evidence-based health planning.
- The consolidation of CSUR networks and their connection with initiatives such as the ÚNICAS project, facilitating integrated care itineraries.
- Continuous training of professionals in low prevalence pathologies, ensuring specialized and homogeneous care throughout the territory.
- Improved access to drugs indicated for rare and ultra-rare diseases.
These recommendations seek to optimize direct patient care, to strengthen the Health Cohesion Fund as a lever for the transformation of the NHS, especially with regard to the care of patients with rare diseases, and to improve coordination between institutions and develop specific therapies for rare and ultra-rare diseases. We consider these aspects to be essential pillars for improving the quality of life of those suffering from these types of pathologies.
