IPOPI SCID Newborn screening campaign

IPOPI initiated in the late 2000s an advocacy campaign to raise awareness of SCID newborn screening and, in partnership with the European Parliament, called for EU Recommendations on newborn screening for rare diseases such as SCID (Severe Combined Immunodeficiency).

IPOPI is currently combining efforts at European level with its National Member Organisations (NMOs) to organise national political and awareness campaigns.

IPOPI strives to ensure that babies born with SCID can have access to the earliest diagnosis possible.

Click on a country below to find out more information about SCID NBS at national level!
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Activities at European level

There is probably no other area in public health in which 28 national approaches could be considered as inefficient and ineffective as with rare diseases.

The specificities of rare diseases single them out as a unique domain of very high added value of action at Community level. (Council Recommendation of 8 June 2009 on an action in the field of rare diseases)

Taking action now on newborn screening for SCID and other rare diseases ensures coherence with the European policy in the field of rare diseases. This is a clear sign to European patients with rare diseases that Europe is not the addition of its Member States, but a greater entity that protects citizens’ lives and ensures they all have equal rights to adequate diagnosis and subsequent care, no matter how rare their disease is.

IPOPI held its first European PID Forum in June 2011 on the subject of SCID Newborn Screening. This Forum, chaired by Ms. Glenis Willmott MEP, allowed IPOPI to place for the first time ever the topic of SCID newborn screening on the European Parliament’s agenda. Since then, much has been done and many exciting developments have occurred!

Thanks to the strong commitment and support from Ms. Willmott, IPOPI was able to launch and promote amongst Members of the European Parliament a Call to Action on SCID newborn screening. The following year and thanks to additional supporters in the European Parliament, the three biggest political groups in the European Parliament supported and tabled an Oral Question to the European Commission calling for the EU Recommendations on Newborn Screening for SCID and other rare diseases. Since then IPOPI has engaged in discussions with relevant interest groups and EU policy makers to advocate for an EU coordinated action on newborn screening.

Main political and scientific documents prepared in the context of this advocacy campaign:

Support to NMOs with national campaigns

European NMOs are leading great initiatives at national level in order to request the inclusion of SCID amongst the diseases newborns are screened for at birth. IPOPI endeavours to assist and support their efforts in order to ensure that there is coordination between national, European and international level.

IPOPI is actively supporting national political advocacy campaigns aimed at accelerating the implementation of SCID newborn screening in a step by step approach at the national level across Europe. IPOPI has been part in the outreach to Ministers of Health, heads of the national newborn screening committees or regional departments of health, emphasising the need for SCID screening of babies at birth.

IPOPI supports its NMOs in organising meetings with national policy makers to advocate for SCID newborn screening.

Reasons for SCID newborn screening

Severe Combined Immunodeficiency (SCID) is a paediatric emergency that meets all the criteria to be included in the national newborn screening programmes.

Severe Combined Immunodeficiencies (SCID) is the most severe form of PIDs. Children born with SCID lack a working immune system. They are only partially protected from infection in the first few weeks of life thanks to maternal antibodies. Once these antibodies disappear from the child’s system, the child will be prone to severe infections that either threaten survival or seriously compromise the child’s health beyond the first year of life.

By performing systematic screening programmes at birth for SCID, children born with this condition can have a timely access to haematopoietic stem cell transplantation (HSCT), a curative surgery for SCID. As a curative treatment, a timely HSCT allows babies’ immune system can be rebuilt and hence, cured for life. An alternative curative therapy is gene therapy that may be administered when HSCT cannot be performed. Newborn screening for SCID will enable a prompt diagnosis and fast access to treatment and will contribute to saving many babies lives. This is why IPOPI is committed to ensure its implementation both in Europe and other regions of the world.

For many years, the incidence of SCID in newborns was unknown, as many of these babies would pass away before they could be diagnosed. Since 2010, the United States included SCID in the national recommended uniform panel for newborn screened disorders. Data pooled from 10 states plus the Navajo Area shows that 52 cases of SCID were detected out of 3,030,083 newborns screened. Babies diagnosed with SCID and treated through transplantation, enzyme replacement and/or gene therapy survived in 92% of the cases. (Information based on Kwan A, Abraham RS, Currier R, et al. Newborn Screening for Severe Combined Immunodeficiency in 11 Screening Programs in the United States. JAMA. 2014;312(7):729-738. doi:10.1001/jama.2014.9132.)

More information on the status of SCID newborn screening implementation in the United States on Primary Immunodeficiency Foundation (IDF) website!