"Secondary" Screening Test for Newborns "Costing Lives"



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Britain's newborn screening program is "second-rate" and puts lives at risk, a charity warned.

Genetic Alliance UK said babies lack controls for rare but serious health problems, as the NHS blood test only tracks nine health problems.

This compares to screening for 20 or more diseases in European countries and about 60 in the United States, he said.

In the United Kingdom, the Neonatal Blood Spot (Heel Sting) test looks for rare but serious conditions, including sickle cell disease, cystic fibrosis and six metabolic disorders.

This is usually done when the baby is about five days old and is done at home by a midwife or health worker.

The results are usually sent to parents by letter six to eight weeks later.

Genetic Alliance UK has stated that some treatable diseases are not detected even though there are affordable ways to extend the screening test.

Jayne Spink, its managing director, said: "The pace of adopting new blood spot screening programs in the UK has become so slow that we have been left behind by the majority of other income countries. high.

"It is painful to think of the long, needless diagnostic pathways that some British families have to endure, and even worse, to think of missed opportunities, including treatment.

"We need to ensure that newborn screening takes into account the number of subsequent diagnoses and we need to harness the potential of our current technology and genomics."

Sara, Alex and Ayden Hunt (Contact'PA)

Sara Hunt's boys, Alex and Ayden, were born with adrenoleukodystrophy (ALD).

It is a rare hereditary disorder that affects the adrenal glands and the "white matter" brain, resulting in a gradual loss of physical and mental skills.

In the United Kingdom, screening for ALD is not routine in the Heel Puncture or Newborn Blood Screening Program.

Alex was diagnosed only at the age of seven and died at age 19, but Ayden's condition was examined earlier and he was treated.

Mrs. Hunt, from East Dulwich, South East London, said, "My child is dead.

"This death was cruel and his life was unnecessarily painful and painful.

"People talk about postal lotteries in the UK for health care, but children in all UK postcodes are exposed to unparalleled risks.

"It's not just unfair and cruel for the country's children, it's heartbreaking, useless, and late.

"It's time we give all children a better chance."

Professor Anne Mackie, Screening Director at Public Health England, said the UK National Selection Committee, which advises ministers on population screening, will make recommendations later in the year.

She said: "Every September, the committee calls for new conditions to be examined for screening. This year, they received a number of proposals to consider new diseases as part of the newborn blood stain screening program.

"The committee will make its recommendations by the fall."

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