Fighting for expanded newborn screening


Jesús Ignacio Meco Rodríguez

16 years ago, this term crossed my path. It was like a loud slap in the face. It turned out that after more than 6 months of fighting for my daughter’s life, I learned that if she had undergone the darn test, she would not have had such a traumatic debut due to her illness. Sorry, my daughter has propionic acidemia, a hereditary metabolic disease included in most of the expanded screenings in the autonomous communities. I saw my daughter cry until exhaustion, suffer night after night, and yet today I find that there are still experts talking about cost-effectiveness, when I am talking about avoiding suffering. I’m talking about life.

We are also referred to the severity of the disease and even in many cases to its quality, or the importance of having more or fewer diseases in the program is downplayed, but cost-effectiveness always prevails. Always expert committes, meetings, and obstacles to do something that is undoubtedly proven and scientifically endorsed today. It is a shame that eleven autonomous communities, 73,85% of the Spanish population, have an expanded neonatal screening in their portfolio, and that six autonomous communities plus the Ministry of Health do not recognize programs that, in some cases, have been in operation for more than 20 years, saving lives. 

It is time to demand accountability, change denigrated roles, and talk about reality. I have always thought that it is not right to demand responsability for what has to come, but the expanded neonatal screening is already here, well, in eleven communities.

I would not sleep well if I were responsible for unnecessary suffering, let us hope that the ballot boxes remind them of it.

Leave a Comment

Your email address will not be published. Required fields are marked *