More information about the history, finance and international newborn screening.


History

Screening for phenylketonuria (PKU), using blood from the newborn blood spot screening, has been carried out in the Netherlands since 1974. Since 1981, this blood is also tested for congenital hypothyroidism (CH) and, since 2000, for adrenogenital syndrome (AGS).
In November 2005, State Secretary Ross of the Dutch Ministry of Health, Welfare and Sport announced that tests for additional diseases are to be introduced. Based on a Health Council of the Netherlands’ advisory report submitted in August 2005, screening for 14 additional disorders would commence on 1 January 2007. In 2010, the Health Council of the Netherlands recommended that cystic fibrosis (CF) be added to the blood spot screening. With effect from 1 May 2011, CF was also added to the screening. Screening for homocystinuria (HCY) was terminated with effect from 1 April 2016, at the recommendation of the Health Council of the Netherlands. It had been suspended since October 2010, due to the large number of false-negative results obtained by the screening method in use at that time. Per 1 January 2017, alfa-thalassemia (HbH-disease) and beta-thalassemia major were added to the blood spot screening.

Financial

Since 1 January 2015, carrying out blood spot tests has been financed from the State Budget. In 2018, the charge for a newborn blood spot screening set was €3.62. Based the number of live births, it was estimated that 176,163 newborn blood spot screenings would be carried out. The implementation costs include the cost of collecting the blood from the child and the cost of laboratory tests. The YHC organisation receives €20.71 per child to cover the cost of collecting blood. Laboratory testing costs €52.14 per heel prick blood test card. RIVMNational Institute for Public Health and the Environment -DVP’s organisational costs are estimated to be about €4 million, while RIVM’s co-ordination role costs around €1.76 million per year. The programme’s total annual turnover is approximately €18.8 million. Referrals for diagnosis and treatment are financed as mainstream care.

International

In terms of their content, newborn screening programmes can sometimes differ substantially from one country to another, and even from one part of a country to another. In North America and most of Europe, as well as parts of Latin America, Japan, Australia and New Zealand, newborn screening is part and parcel of mainstream health provision. The number of clinical pictures covered by these screening programmes varies from two to more than 40.
In the rest of Europe, Latin America, the Middle East/North Africa and some Asian countries, work is in progress to bring such provision up to standard, but it will probably still take some considerable time before this can be achieved.
Throughout most of Africa, virtually nothing is being done in terms of newborn screening, nor is any action on this matter expected in the near future.
Given its current package (supplemented with hearing screening), the Netherlands ranks in Europe among the countries that screen for the largest number of disorders, along with Germany, Austria and Spain. France screens on five disorders (PKU, CH, AGS, SZ and CF), as does Great Britain (PKU, CH, SZ, CF and MCAD).