In Spain they are made 42 neonatal screening tests to detect diseases. The neonatal screening program’s main objective is to detect and identify early congenital diseases in newborns. Of the 42 tests that are carried out, 7 are common between autonomous communities, 4 will soon be incorporated into the national plan and 31 depend on Health in each community. The advancement of gene therapies pressure has increased in the pharmaceutical sector. For the early detection of diseases in newborns, it is necessary to prepare the health system for new advances, but also to put an end to differences in screening between communities.
Raquel Yahyaoui, head of the Regional University Hospital of Malaga and head of the neonatal screening laboratory of Eastern Andalusia, affirms that in order to improve the health system, this double challenge must be faced. “The development of gene therapies is unstoppable and the health system must be prepared to incorporate them and maximize their benefits. But first we should solve the historical problem of the great differences between communitieswhich is something that affects equity and can compromise some children’s access to the treatment they need,” says Yahyaoui.
Differences in neonatal screening between communities it is a fact that has always existed. There are many pharmaceutical companies that have put the advancement of gene therapies among their objectives. Official sources consulted by El País explain the existing positions on extending these tests to all communities. “The most important thing that determines whether or not screening should be included is whether making an early diagnosis improves prognosis, hope and quality of life,” says a spokesperson for the Junta de Castilla y León.
“Diagnosing a disease for which there is no treatment or treatment that has not been shown to improve life expectancy and quality of life when applied early only increases the suffering of minors and families”, declares the spokesperson.
The Valencian Community at the tail of Spain
According to the 2019 Neonatal Screening Evaluation Report in Spain, Murcia, followed by Andalusia and Galicia, are the communities that perform the most screening. Other regions that add a considerable number of neonatal tests are Catalonia, Castilla la Mancha, Madrid and Extremadura. However, Cantabria, Castilla y León and Navarra only study eight pathologies. The regions that are at the bottom of Spain in the screening study are Asturias, the Balearic Islands, the Canary Islands and the Valencian Community, with only seven tests. sources of Ministry of Health They confirm the disparity between communities and believe it is necessary to achieve greater cohesion. “What doesn’t make sense is to first expand the supply of tests and then carry out studies to see if they are effective. The tool to do the right thing is the work in progress and the reform of the cohesion law”, says César Hernández, general director of the Common Portfolio of Services and Pharmacy of the National Health System. Equality throughout the national territory is necessary for prevention and detection of diseases in newborns. The pharmaceutical industry emphasizes that therapies are more effective when diagnosed earlier and, for this reason, equitable neonatal screening treatment is necessary.