Mum slams NHS for imposing ‘death sentence’ on daughters by refusing to fund drug to help them battle terminal disease
Gail Rich, 41, will be forced to watch Nicole, seven, and Jessica, three, face an agonising death from Batten disease
A MUM has hit out at NHS health bosses who imposed a "death sentence" on her tiny daughters by refusing to fund their vital medication.
Gail Rich, 41, will be forced to watch Nicole, seven, and Jessica, three, face an agonising death from Batten disease unless officials can agree a price for the drugs they need.
The girls, from Newcastle, could be left blind, immobile, and dementia-stricken before they even reach their teens.
The drug - which is still available in Wales thanks to different procurement rules - has stabilised Nicole and stopped any new symptoms in Jessica.
But the National Institute for Health and Care Excellence has recommended that the medication should not be available on the NHS.
Gail told the : "They said ‘no’ because they’re not sure of long-term results.
"They did say the treatment is a benefit to the children, but because there’s no long-term data they can’t say it’s good use of NHS money. But you’re never going to get long-term data if you stop treatment.
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“They’ve said it’s not a good use of funds. Our issue is you can’t put a price on a child’s life.
"Because Jessica got the treatment early, it could be a cure. Without treatment, she would not be as she is now, showing no symptoms, a whirlwind of energy, just starting school nursery.
"A perfectly healthy girl. When Nicole started the treatment she stabilised. She has a great little life, goes horse riding and is doing amazingly well.”
Jessica had been given the enzyme infusion therapy as part of a trial which will run until the end of 2020.
However, Nicole is on a "compassionate use" trial. Both girls' treatments are funded by American pharmaceutical BioMarin.
Although it's not necessarily a cure, Gail and Matthew told the paper that Jessica's use of it may prove it can stop symptoms ever presenting themselves.
Samantha Barber, CEO of the Batten Disease Family Association, said: "It is not acceptable the only drug available for this awful disease can be turned down like this.
"The BDFA calls for all parties to re-open negotiations with a clear focus on achieving a solution for our children."
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