According to Feder, the neonatal screening covers 11 diseases in some autonomous communities and 40 in others.
Every year, 400,000 babies in Spain undergo a simple Blood drop tests. It is performed between 48 and 72 hours after birth to detect possible diseases. However, depending on the Autonomous Community Where this test is born includes more or less pathologies.
Therefore, the Spanish Federation of Rare Diseases (FEDER) alert about the situation of inequality suffered by families in Spain. His luck and that of his baby depend on the autonomous community where babies are born.
To approach this situation, Feder will go hand in Consultant strategists To start a legislative path. The objective is to take steps to the front to generate an equitable reality in access to diagnosis through neonatal screening in our country.
Feder and rare diseases in neonatal screening
The pNeonatal screening roll of the Common services portfolio of the national Health System It has approved 11 diseases. But some autonomies have included more diseases in their neonatal screening programs. Thus, some include the diagnosis of more than 40 pathologies, such as Murcia or Melilla. While others only have those established by state regulation.
This inequality can also be extrapolated to the European sphere. The situation is very unequal, from the 2 Cyprus Pathologies at 48 from Italy.
In addition, the data show that Spain is the country in Europe where there is a greater difference between the number of diseases. This arises by comparing those that are signed at the national level, included in the common portfolio, and those that are additionally incorporated into the neonatal screening programs of the different communities.
Equity in access to tests
“From Feder we have been working on this line for years, moving the pending challenges in neonatal screening to the Ministry of Health. We are working on a working group with the Ministry. Also with our associative movement composed of 422 Entities”Says Isabel Motero, director of the entity.
For his part, Juan Carrión, values ”all the work that is being developed to increase pathologies in the SNS neonatal screening program.” But he warns of the importance of continuing advancing in homogenization of diseases to favor equality throughout the national territory. “Neonatal screening is a key element to diagnose and treat these diseases early. Also to prevent premature mortality and associated disability. As well as improving the prognosis and increasing the quality of life of those who live with rare diseases,” he argues.
