There's a neonatal test that can save lives, but in Lombardy, screening is like winning the lottery.
Lombardy risks turning a lifesaving newborn test into a matter of luck. This is forcefully denounced in a video titled "With Your Eyes," part of a series of video exposés promoted by the Voa Voa Amici di Sofia Aps Association. After bringing the case of little Gioia Bedetti in Emilia Romagna to national attention, the association is back with a second installment recently published on the organization's website and YouTube channel. The investigation reveals a paradoxical situation: since last June , newborn screening for metachromatic leukodystrophy (MLD) —a rare, degenerative, and lethal disease curable only if diagnosed before symptoms appear through gene therapy developed by the San Raffaele Hospital in Milan—has been available in just 17 of the region's 72 maternity wards.
This means that most children in Lombardy are excluded from a timely diagnosis from the outset, despite the fact that the only effective treatment in the world for this disease was developed at the TIGET hospital in Milan. "It is unacceptable that two newborns, perhaps born in the same city, have different rights just because they were born in different hospitals," denounces Guido De Barros, president of Voa Voa.
The dataAccording to data released by Telethon , in the first eight months of the Lombardy pilot project, only 11,000 diagnostic tests were performed, with informed consent remaining at 41.3%. This rate, De Barros estimates, would allow the pilot project (which involves 100,000 tests) to be completed in over six years, compared to the 30 months set by the protocol. A comparison with Tuscany , the first region in Italy to introduce screening , highlights the injustice: here, since March 2023, 100% of maternity wards have been screening and 97.5% of parents have participated, despite it being a voluntary project.
The video—produced by De Barros, with the support of Brescia members Manuele Bozzoni and Jonida Lazi , and testimonies from mothers and expectant mothers—focuses on the city of Brescia , listing the causes of the stalemate: bureaucracy, staff shortages, insurance concerns, fragmented ethical processes, and poor communication between the regional coordination and neonatal departments. After contacting the department directors individually, the association received responses that confirm the emergency but show tentative signs of change : at least six hospitals, urged by Voa Voa, have stated they intend to reconsider joining the project, while others are trying to overcome administrative obstacles.
"Our information efforts are bearing fruit, but they're not enough: clear political action is needed to ensure that no maternity ward is left behind," insists De Barros, calling on the Region to submit an urgent council question and calling any further delays a failure to protect the right to life . In the meantime, the association invites expectant couples to ask their hospital whether or not it offers lifesaving MLD screening and to report any denials to Voa Voa, which will continue its fight until early diagnosis is guaranteed for all. The video investigation is available online at voavoa.org and on YouTube ("With Your Eyes"), while the full investigation, including data and identified issues, is available on the website.
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