December 19, 2017

IPOPI and AEDIP join forces to push for SCID newborn screening in Spain

IPOPI and AEDIP (the Spanish national patient organisation) held a parliamentary event at the Spanish Congress on October 23, 2017, to push for SCID newborn screening. The meeting was hosted by Dr Jesús María Fernandez, Member of Parliament (MP), and had the support and presence of Dr Francisco Igea MP, Ms Isabel Cabezas MP and Ms Amparo Botejara MP.

These four MPs represented the four largest parties at the Spanish Congress and all of them supported the initiative of expanding SCID newborn screening to the whole country. It is uncommon for these four political parties to agree and support the same initiative, but as it was stated many times during the event, screening for SCID can help diagnosing the disease very early in time and facilitate access to curative treatment.

Parliamentary advisor Ricardo Péres Alamillo, MP Isabel Cabezas, AEDIP President Carlos Jimenez, MP Jesús Maria Fernandez, MP Amparo Botejara and Jose Drabwell, IPOPI President.

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.

Members of the Spain Parliament, AEDIP representatives, IPOPI representatives and key Spain physicians at the event