Submitted by Karen Harrison on Monday 7th December 2020
Published on Monday 14th December 2020
Current status: Closed
Closed: Monday 14th June 2021
Signatures: 11,840
Relevant Departments
Tagged with
Addison ~ Child ~ Children ~ Devastated ~ Devastating ~ disease ~ Essential ~ fund ~ RARE
Fund adrenoleukodystrophy (ALD) screening for children at birth.
ALD is a rare, devastating terminal genetic condition, affecting 1:20,000. If not diagnosed from birth healthy boys can lose all function and die.
ALD also causes Addison's disease which is easily treated with medication. If you don't know you have Addison's disease or ALD they can both be fatal.
It takes many months, even years to be diagnosed with ALD, then it is too late for treatment and these boys can end up in a vegetative state with death often occurring within two to four years. Boys who are known to have ALD will be put on a program of monitoring and treatment to save their lives. Knowing you have ALD from birth is essential for successful treatment.
Many families experience a sacrificial lamb scenario, having to lose one child to get a diagnosis for their other children.
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The Government responded to this petition on Wednesday 2nd June 2021
The UK National Screening Committee advises the Government on screening. It continually reviews the evidence for screening for adrenoleukodystrophy, and will publish its latest recommendation shortly.
Adrenoleukodystrophy (ALD) is a devastating disease. The physical, mental and financial impacts affect both the individual but their families too. Screening can reduce mortality and morbidity by testing people in the population who appear healthy and have no symptoms by detecting conditions at an earlier, more treatable stage. However, it is important to note that screening programmes can do harm as well as good. Therefore, the decision to start and run a national screening programme is subject to the highest level of scientific and public scrutiny.
The UK Government and the NHS rely on the expert advice of the UK National Screening Committee (UK NSC) for all aspects of population screening. The UK NSC makes its recommendations based on internationally recognised criteria and a rigorous evidence review process with any new proposals, like that for ALD, being carefully considered by experts and then put out to public consultation before being implemented. Conditions are reviewed against evidence review criteria according to the UK NSC’s evidence review process.
These criteria include consideration of whether there are accurate tests for the condition, whether screening helps improve health outcomes, and how well clinical detection and management are implemented. More information about the UK NSC’s evidence review process and criteria can be found online:
https://www.gov.uk/government/publications/uk-nsc-evidence-review-process/uk-nsc-evidence-review-process
https://www.gov.uk/government/publications/evidence-review-criteria-national-screening-programmes/criteria-for-appraising-the-viability-effectiveness-and-appropriateness-of-a-screening-programme.
ALD was added to UKNSCs list of recommendations to review in 2017 following an annual public call for topics and has continually been reviewed since. A public consultation on screening for ALD closed on 5 January 2021, and the updated document and consultation comments were considered at the UK NSC meeting in March 2021. The minutes from this meeting containing the UK NSC’s latest recommendation will be published once finalised and will be available here:
https://drive.google.com/drive/folders/0B8eopFA9myQefk9EalVQLWs5RlFBSmlUdzNvaUxuS2FhdWV2VWJaSTZ2YXlTdVZDYXdyNDA.
You can read more about the work of the UK NSC and their recommendations at their website:
https://www.gov.uk/government/organisations/uk-national-screening-committee
Department of Health and Social Care
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