Tnia Bachega, president of the Brazilian Society of Neonatal Screening of Inborn Errors of Metabolism (SBTEIM), defended this Tuesday (21/6) that these features need to be taken into account in the implantation of leg tests spread across Brazil. ۔ Health system in every area. In addition, the doctor said that other measures would have to be taken together to improve the fight against rare diseases in the country.
“In other states where it is [implantao do teste ampliado] As has already been done, like So Paulo, the coverage index shows that 98% of babies born are submitted to this diagnostic test. Therefore, there are states where screening is very systematic, “said Tnia.” Despite the decline in birth rates last year, perhaps due to an epidemic, we had 600,000 births a year. That’s the equivalent of that. [nmero] Of European countries. From our point of view, as SBTEIM, this population deserves access to new health technologies, “he added.
The doctor participated in CB.Frum’s second roundtable “Spreading the Foot Test: A Basic Step for Early Diagnosis of Rare Diseases”, organized by Correio. Today’s event discusses the challenges of expanding heel perch tests to include 51 diseases, including rare diseases such as spinal muscular atrophy (SMA). Also present at the table was Antoine Sohail Dahir, President of Casa Hunter. Carmella Grindler, Coordinator of the New Palo State Department’s Newborn Screening Program; And Daniela Mendes, general superintendent of the Jay Clement Institute.
“On the other hand, we have regions with low economic growth, which today are struggling to cope with six diseases. [no teste]. So we need developed regions. [do teste ampliado]There are already conditions for action. Now, we can’t help but see where the triad is not going well, “said Tanya.
The doctor also said that if the heel bite test is positive, it does not confirm that the child has the disease. Confirmation tests, specific to each disease, should be performed to complete the diagnosis. However, some areas of the country do not conduct these verification tests. According to the president of SBTEIM, training of pediatricians and geneticists is essential for better diagnosis and treatment of the 45 new diseases included in the test.
“We tried to get closer to the MEC. [Ministrio da Educao e Cultura] Achieving rare disease status at graduation [do curso de Medicina]. If we now have a national program, which means a long-term development, if we have a foot test that is done in the United States, then we have to think about the treatment of these diseases. We have to think about our graduation grade, “said Bachega.