Saving the lives of spanish "Bubble" Children

by Amaya Erce
A chronicle of a success foretold?

Saving the lives of Spanish "bubble" children... A chronicle of a success foretold?

"Life is nothing if not a continuous succession of opportunities to survive", wrote García Márquez. And more opportunities to survive is what the latest policy developments in Spain may bring in a very near future to babies with Severe Combined Immunodeficiency (SCID), a rare condition of the immune system.

SCID is the most serious form of primary immunodeficiency, as a consequence of which the new-born becomes extremely vulnerable to severe infections from bacteria, viruses and funghi. Fortunately, babies with this rare genetic condition can be identified at birth through a simple test and treated, allowing the prevention of unnecessary deaths and an improvement in their quality of life; early diagnosis is key in the fight against this disease that otherwise can be fatal.

While screening for SCID is not (yet) available in Spain, the last year has seen relevant political developments likely conducive to the inclusion of this screening technique in the Portfolio of Common Services ("the portfolio") of the National Health System (SNS for its acronym in Spanish). This would position Spain a as pioneer country in the European Union, becoming the first Member State to make this test available for all children born in the country.

Indeed, the impulse fostered in 2016 by the consensus around this topic from a coalition of representatives of patients and health professionals together with the advocacy work led by the by the Spanish Association of Primary Immune Deficiencies (AEDIP), translated into a political momentum in favour of the implementation of SCID neonatal screening in Spain.

At national level were noteworthy the three non-legislative motions tabled by Spain's ruling People's Party (PP, Christian democratic political party) and Ciudadanos (C's, centre-right liberal political party) early this year urging the Government to include this test in the portfolio of common services of the SNS, as well as the answer by the Ministry of Health in March to an oral parliamentary question from an MP from C's confirming that the Government was working on the assessment of the efficacy and cost-effectiveness of the test ahead of its potential inclusion in the portfolio.

The Minister of Health confirmed that they were working on the assessment of the efficacy and cost-effectiveness of the test ahead of its potential inclusion in the portfolio.

Significant milestones have also taken place at regional level: Catalonia included as of January 2017 SCID neonatal screening in its regional portfolio of extra services, becoming the first region in the EU that incorporated this test; meanwhile, other regional parliaments (e.g., Andalusian and Murcian parliaments) have also debated and approved the potential inclusion of the test in their regional portfolios.

This political will is probably one of the reasons behind the significant progress in the assessment process made by the national government, as reported to some stakeholders, to implement SCID newbown screening in Spain. However, there is still a long way ahead for, once the health technology assessment is concluded, the implementation of this test will have to be discussed and approved by the organ of general coordination in matters related to health between the central State and the autonomous communities (the Interterritorial Council of Health).

In order to speed up this process and ensure that it will succeed, MPs from the four leading groups in the Spanish Congress (Popular Parliamentary Group (P.G.), Socialist P.G., Ciudadanos P.G. and Confederal P.G. Unidos Podemos-En Comú Podem-En Marea) joined forces with regional policymakers and key national and international stakeholders (AEDIP, International Patient Organisation for Primary Immunodeficiencies (IPOPI), Spanish Association of Pediatrics (AEP), Spanish Society of Immunology (SEI), Spanish Society of Clinical Immunology, Allergology and Pediatric Asthma (SEICAP), Spanish Federation of Rare Diseases (FEDER), amongst others). They did so during a round-table that took place in the Spanish Congress on 23rd October, where they agreed on urging the Ministry of Health to expedite the process so that the inclusion of neonatal screening of IDCG reaches the Interterritorial Council for approval as soon as possible, in order to ensure that any child born in Spain is in danger of suffering this devastating disease.

The four leading groups in the Spanish Congress joined forces with regional policymakers and key national and international stakeholders during a round-table that took place in the Spanish Congress on 23rd October.

In this very same sense, the MP from the P.G. Ciudadanos, Mr. Francisco Igea, promoted various parliamentary initiatives on the last week of October. These included a parliamentary question to the Ministry of Health recalling the response by the Ministry to the oral question back in March and enquiring about the results of the technology assessment as well as the timeline for neonatal screening to be included in the portfolio; a statement during a parliamentary debate with the Ministry of Health on their policies to guarantee equity, reduce inequalities and avoid territorial fragmentation in health and a motion motion for debate in the plenary on the same topic, both specifically mentioning neonatal screening of SCID as an example of regional inequalities that needs to be tackled.

In view of all these very significant political steps, it seems a matter of time that SCID newborn screening in Spain becomes a closed-deal. Will this open the door to other EU Member States also considering making available SCID newborn screening to all the babies born in their respective countries?

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