The Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU) has submitted its comments to the Draft Decree of the Government of the Balearic Islands that modifies Decree 94/2008, of September 12, which approves the bases and establishes the content of the complementary services portfolio of the public health system of the Balearic Islands in order to improve the coverage of the neonatal screening program. The aim of this decree is to establish the content of the complementary health services of the neonatal screening program for endocrine-metabolic diseases in the Balearic Islands.
With this, the Association celebrates that, driven by the emergence and the rise, in recent years, of new advances in techniques and analytical tools available in the Balearic reference laboratory of the Neonatal Screening Program in the Balearic Islands, which allow a more effective and early detection of a greater number of pathologies, the Community considers that a necessary update in the field of preventive health should be carried out. This involves, thanks to the advances in technology, the modification of Decree 94/2008 of the complementary services portfolio of the Public Health System of the Balearic Islands to increase the number of pathologies that can be analyzed and detected by means of screening tests in newborns.
However, it also considers it appropriate to continue to deepen new developments and proposals that give visibility to less frequent pathologies and their challenges, as well as to address new proposals for improvement, such as the recognition of the economic and social value of pharmaceutical research in this field, equity in access to treatments throughout Spain, the streamlining of bureaucratic processes or the improvement of the innovation evaluation process, among many others.
After analyzing the previous public consultation, the Association considers that the draft Decree approving the bases and establishing the content of the portfolio of complementary services of the public health system of the Balearic Islands will play a relevant role in improving the quality of life of patients, and some recommendations are provided below:
- To continue promoting the inclusion of the greatest possible number of RRD in the neonatal screening program as a common tool for early and accessible detection, prioritizing the incorporation of all those pathologies for which a safe and effective screening technique is available and for which treatment has been approved and included in the Basic Common Portfolio of the National Health System.
- Recognition of the specialty in clinical genetics, both to align with Europe, as Spain is the only country that does not have this specialty, and to speed up access to patients.
- To take advantage of the evaluations of other Autonomous Communities, enhancing regional collaboration in order to speed up the future inclusion of new pathologies in the screening list.
- To shorten and reduce the time required to update the portfolio of common services of the Autonomous Community.
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