Early diagnosis and care
Objective 1: To promote early diagnosis & ensure optimal access to care
SCID Newborn Screening campaign
Severe Combined Immunodeficiency (SCID) is the most severe form of PID and a paediatric emergency.
IPOPI strives to ensure that babies born with SCIDs can have access to the earliest diagnosis possible allowing for successful and curable treatment.
IPOPI’s SCID newborn screening campaign started in the late 2000s. This advocacy campaign aimed at raising awareness of the importance of screening newborns for SCID started in partnership with the European Parliament, in a call for EU Recommendations on newborn screening for rare diseases such as SCID.
IPOPI activities at European level
IPOP’s first ever EU PID Forum was dedicated to SCID Newborn Screening. This Forum was held in June 2011 and chaired by Ms. Glenis Willmott MEP, allowing IPOPI to place the topic of SCID newborn screening on the European Parliament’s agenda.
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.
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 June 8, 2009, on an action in the field of rare diseases
Taking action now on newborn screening for SCID and other rare diseases ensures European policy coherence. A sign to European rare diseases patients that Europe protects citizens’ lives and ensures have equal rights to adequate diagnosis and subsequent care, no matter how rare their disease is.
Main political and scientific documents prepared in the context of this advocacy campaign:
- European Parliament Oral Question to the European Commission on Newborn Screening, April 2013
- SCID Newborn screening White Paper
- Call for Action on NBS for SCID_FINAL
- PLUS Meeting with former Commissioner for Health to discuss, amongst others, the need for EU action on SCID newborn screening, in October 2011
- BBC press coverage of Ms Willmott’s meeting with patients with SCID and their families
- Press release from Ms Willmott on her meeting with patients with SCID and their families
- European Parliamentary Question to the European Commission on SCID newborn screening
- Press release by Ms Willmott MEP on IPOPI’s PID Forum on SCID Newborn Screening
Support to NMOs with National Campaigns
IPOPI is currently combining efforts at European level with its National Member Organisations (NMOs) to organise national political and awareness 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.
