Posted - September 2019 in HSPRF News
No national strategy on rare diseases
The UK is leading the way by announcing in June a scheme to start in 2020 for gene testing all seriously ill children who have yet to receive a diagnosis.
This article by the National Post in Canada laments “we need a national strategy in this country and we don’t have one”.
We could, and should, say exactly the same thing about Australia.
There is no national strategy on rare diseases in Australia!
Whilst there has been advocacy to government for a national strategy on rare diseases for several years now, there is no discernible progress and no reason to think we are any closer to having one. The situation is both disgraceful and unforgivable for a first world country such as ours and our federal political representatives really do need to do a lot better.
Scientists in Canada are calling for national coverage of genome sequencing for children with rare conditions, similar to what the UK is to soon offer, the National Post reports.
It added that, beginning next year, the National Health Service in England is to offer gene sequencing to all seriously ill children who have yet to be diagnosed and their parents. “The UK has got the whole thing figured out,” Stephen Scherer, the director of the applied genomics center at the Hospital for Sick Children in Toronto, tells the National Post. “We need a national strategy in this country, and we don’t have one.”
According to the National Post, there is an effort afoot in Ontario to cover gene sequencing for children with unexplained developmental delay.
Robin Hayeems, a health policy researcher at the University of Toronto, notes that broader sequencing could cut back on the testing odyssey that patients undergo, but could also uncover unexpected secondary findings. She cautions that Ontario should follow a “cautious, evidence-informed approach” to offering gene sequencing and could learn from the UK’s experience.
SOURCE: genomeweb Jun18, 2019
Push for Sequencing