Neonatal SMA screening will no longer be available in 2024.
According to RTL Híradó, newborn SMA screening will end in 2023, and it will stop completely at midnight today. Yet since November 2022, nine babies have been diagnosed with spinal muscular atrophy before symptoms even appeared. With the free and voluntary screening, it was possible to start the treatment for these babies in a few days.
Experts say time is of the essence with this genetic disease. The sooner therapy is started, the greater the chance that the sick child will develop like his peers. In November 2022, a research program for newborn SMA screening was launched.
According to the SMA Association, the affected parents were shocked by the decision to stop the program and are asking in a letter to allow it to continue, the rtl.hu.
We were told by the treating doctors that this will end on December 31. So it was quite a shock because I thought something had started that would be on its way from here, but no
Krisztina Buday, president of the SMA Association, told Hírado.
The Ministry of the Interior also spoke on the issue, they wrote:
the ministry has spent more than HUF 400 million on the program so far. They are now processing the screening data, and based on the filtered data, they will decide whether to continue the screening program.