Posted on 06/21/2022 18:09 / Updated 06/21/2022 18:10
(loan: Playback / Youtube)
The president of the Brazilian Association for the Investigation of Infants with Congenital Metabolism (SBTEIM), Tânia Bachega, defended this Tuesday (21/6) that the implementation of an expanded foot test across Brazil needs to take into account specific health conditions in the country. each region. In addition, the doctor says other steps must be taken to improve the fight against rare diseases in the country.
“In other states where this [implantação do teste ampliado] already done, like São Paulo, the immunization report shows that 98% of newborns are presented with this diagnostic test. So, there are states where screening is very organized, “Tânia said.” Even with the decline in birth rates that occurred last year, probably because of this epidemic, we had 600,000 babies born that year. This is similar to [número] of European countries. In our view, like SBTEIM, this population deserves to have access to new health technologies, “he added.
The doctor participated in the second table CB Forum “Extending the foot test: a basic step for early detection of rare diseases”, developed by Letters. The event discussed today the challenges of expanding the heel scalp to include 51 diseases, including rare diseases such as Spinal Muscular Atrophy (SMA). Also present at the table were the president of Casa Hunter, Antoine Souheil Daher; coordinator of the São Paulo State Department of Infant Screening Program, Carmela Grindler; and executive director of the Jô Clemente Institute, Daniela Mendes.
“On the other hand, we have economically underdeveloped regions, which today have a hard time developing six diseases [no teste]. So, in our opinion, developed regions need it [do teste ampliado], you are already in a position to take action. Now, we can’t help but look at where the solution is not going well, “Tânia said.
The doctor also said that a foot test, if positive, does not guarantee that the child has the disease. confirmation tests, specific to each disease, must be performed to complete the diagnosis. Some regions of the country, however, do not conduct these authentication tests. It is necessary, according to the president of SBTEIM, to train pediatricians and geneticists to diagnose and treat 45 new diseases that would be included in the trial.
“We tried to be close to the MEC [Ministério da Educação e Cultura] having a degree in rare diseases in graduation [do curso de Medicina]. If we now have a National Plan, which means great long-term development, if we have a foot test very close to what is happening in the United States, we should also think about treating these diseases properly. We have to think about our graduation grid, “defended Bachega.