Here's the story....
LITTLE Damien Henzell was given a new lease of life thanks to a wonder drug – but now it has been taken away.
The six-year-old faces an uncertain future after health ministers decided not to recommended the treatment he uses on the NHS.
Aged 14 months, Damien was diagnosed with Atypical Haemolytic Uraemic Syndrome (aHUS) – a rare disease that leads to kidney failure.
Since being put on the drug eculizumab as part of a trial, the youngster has had his life turned around and is thriving on the new medication.
But health ministers have decided not to approve the treatment on the grounds of money; the drug costs approximately £250,000 per patient per year.
Today Damien’s mum, Tina, spoke of her upset and fear at what the decision means for her son’s future as Newcastle Primary Care Trust has also refused to fund his treatment.
The 29-year-old, of Elswick, Newcastle, said: “The drug has made such a positive difference to Damien’s life. It has given him the freedom to do things other children his age do.
“Before he started the drug he would have to go to hospital twice a week for plasma infusions.
“But now he has to go to hospital just once fortnight to get an infusion of eculizumab and this has made a huge difference to him and our family.
“Damien can spend a lot more time at school, playing with his friends and we can plan to do more things together.”
Damien has been in and out of hospital all his life and has regularly had to take time off from Hawthorn Primary School for life-saving treatment.
At the end of last year, his condition relapsed and he was plunged into serious kidney failure.
Damien is treated at Newcastle’s Great North Children’s Hospital and consultants decided he should be given eculizumab to offer him the best outcome.
Dr Sally Johnson, a consultant paediatric nephrologist, said: “Damien’s story demonstrates the incredible transforming effect of eculizumab on the lives of children with aHUS.
“Some children in the UK have received funding from their primary care trusts for eculizumab treatment.
“Damien’s PCT have refused to fund his treatment with eculizumab and this illustrates the inequality that occurs when high-cost treatments are commissioned locally.
“This inequality would be eliminated by the proposed nationally commissioned service.
“National commissioning is the answer to providing secure, long- term treatment for Damien and others like him.”
Newcastle PCT insisted that when looking at individual cases it must take into consideration the real clinical benefits a drug may provide. The trust said it believed in Damien’s case eculizumab would not be of significant benefit.
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