Reimbursement of screening for the severe combined immunodeficiency in Germany and Sweden

The test for severe combined immunodeficiencies (SCID) is part of neonatal screening since July 1, 2019, in Germany. The evaluation committee has set the compensation for the SCID screening so that the laboratory investigation can now be settled.

The term “SCID” is used to summarize various diseases, triggered by congenital severe immune system disorders with the disturbed development of functional T-cells and B-cells as a result of numerous genetic mutations. These immune deficiencies, which often lead to a lethal outcome if left untreated, should be detected as soon as possible in order to provide proper and effective medical care. The benefit assessment of SCID screening has also shown that mortality is reduced by early detection.

The extended neonatal screening includes the early detection of 14 diseases. These are congenital metabolic defects, endocrine disorders, and now new, serious immune deficiencies in newborns. At the end of 2018, the G-BA (the Federal Joint Committee) included the SCID investigation in the Children's Directive. With the regulation on reimbursement, the test is now available as a cash payment.

Therefore, the Advanced Newborn Screening fee schedule item (GOP) 01724 in EBM (Uniform Evaluation Scale) is now extended to include SCID diagnostic testing. For the additional scope of the investigation, the rating of the existing GOP 01724 has been increased by 74 points to 221 points (€23.95).

Further investigation regarding the early detection of spinal muscular atrophy (SMA) is currently under discussion in the G-BA.

The full details in German can be found here.

At the same time, the Swedish National Board of Health and Welfare (Socialstyrelsen) has released the recommendation and documentation assessment of screening for the severe combined immunodeficiency (SCID) in newborns. This document states that health care should offer screening for SCID as approximately two or three children per each year can be diagnosed and treated for the fatal disease with the test available.

See full details in Swedish here.

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