December 18, 2015

Germany – SCID Newborn Screening taken a step further

The petition to start screening for SCID (Severe Combined Immunodeficiency) was submitted to the German health authorities and IQWiG (Institute for Quality and Efficiency in Health Care) has been assigned to assess the petition. The assessment will take 18 months and during its course other awareness actions will take place.

As a first step, a hearing of patients and families by health authorities took place in Cologne in September 2015. “What is important to patients and their families? What problems and burdens do they have? What do patients think about treatment?” are the main questions the committee is analyzing.

Gabriele Gründl, chairperson of the dsai together with dsai-members informed the committee that not only screening for T-cell deficiencies but also for B-cell deficiencies is very important to avoid severe infections and subsequent organ damage. The participants described the struggles they face as late diagnosed PID patients and the impact on both their physical and mental health.
The committee members were impressed by the patients’ commitment
and were also deeply moved by their stories.