Wicklow Sinn Féin TD John Brady who has been campaigning for over five years on the issue has appealed to both serving Minister for Health Stephen Donnelly, and Taoiseach and former Minister for Health Simon Harris to put aside the political rhetoric and act immediately to address the suffering of the 200 plus babies born in Ireland every year suffering from a rare disease. Many of whom go undiagnosed until their illness manifests itself at a later date, when much time that could have been spent addressing the illness has been lost.
A simple and inexpensive screening process called the heel-prick test carried out on newborn children can identify a wide range of rare diseases. Ireland currently carries out less screenings of newborns for rare diseases than 75% of other European countries.
Austria, Italy, Portugal and Russia test for a minimum of 30 conditions, while Slovakia, Ukraine, Poland, Hungary, Czech Republic, Estonia, Germany, Finland, Denmark, Norway, Netherlands and Sweden screen newborn babies for a minimum of twenty rare diseases.
Brady said:
“For over five years I have been pushing to get the heel-prick test for newborn babies expanded to the level of European norms.
During that time, we have heard a lot of rhetoric, and have witnessed considerable political posturing from the government, but have witnessed next to nothing in terms of results.
Over the tenure of two Wicklow Ministers for Health, first Simon Harris, and then Stephen Donnelly, the Newborn Bloodspot Screening (NBS) heel-prick test has only been expanded to include one more disease. Taking the total to nine here in Ireland, which is only a fraction of that elsewhere in Europe.
In fact, it is less than 75% of European countries.
Some 120 babies born annually are identified with one of the diseases screened for in the heel-prick tests.
In the last five years, one solitary disease has been added to the Newborn Bloodspot Screening (NBS) heel-prick test, taking it from 8 to 9.
Many European countries screen for a minimum of 30 diseases. Italy tests for 48 conditions.
According to ‘Rare Diseases Ireland’ there are over 200 babies born every year suffering from a rare disease, whose lives and health could be saved by the expansion of the heel-prick test from the current 9 to the European standard.
We are one of the wealthiest countries in the world. We can afford this. It is simply a matter of political will.
This is a very simple process, which costs little, that is carried out on newborn children, but with potentially life altering findings, if medical staff are allowed to discover what to treat.
Clearly what is lacking is the necessary political prioritisation. For whatever reason this has not been giving the priority it needs by the government.
These are diseases that can be picked up at birth and treated in a timely fashion if the political will was there.
Were told previously following the Scally report that a national screening committee be put in place. The government have essentially used this development to hide behind the Committee, which they continue to do.
The main issue remains the lack of political will to drive the project forward.
I call on Minister Stephen Donnelly to act immediately to bring Ireland up to the European standard. Anything less is unacceptable. The government needs to show ambition, it needs to show compassion, and it needs to get things done – Ireland needs a Newborn Bloodspot Screening (NBS) heel-prick test equal to that of Italy with its current practice of screening for 48 diseases