The meeting was very well attended with representatives from key stakeholder groups at national and regional level, such as: the Spanish Association of Paediatrics (AEP), the Spanish Society of Immunology (SEI), the Spanish Society of Clinical Immunology, Allergy and Paediatrics Asthma (SEICAP), the Spanish Federation of Rare Diseases (FEDER), the Balearic, Andalusian and Catalan associations of primary immune deficits (ABADIP, ANADIP and ACADIP respectively) and the Barcelona PID Foundation, as well as representatives of governments and autonomous parliaments.
This meeting held at the Spanish Congress is part of a national campaign in which IPOPI has partnered with AEDIP and key healthcare professionals to advocate for the inclusion of newborn screening for SCID as a standard practice for newborns across the country. Currently, there is only one Spanish region offering this procedure, Catalonia, but several others have started raising and discussing this issue at their regional parliaments, such as Murcia, La Rioja or Andalusia.
Additionally, an official and technical request has been prepared and submitted to the Spanish Ministry of Health requesting the inclusion of SCID in the panel of diseases for which babies are screened at birth. At the time this article is written, the proposal is being analysed by the Ministry and a response should be soon given on whether SCID qualifies as a cost-economic practice. Given the support reached at the Spanish Congress and the many questions tabled to the Ministry by MPs, it is hoped the response will be positive and soon this life-saving technique can be discussed and adopted by the regions in early 2018.