“We are seeing George slowly deteriorate” - Ipswich family devastation as drug denied for NHS
PUBLISHED: 15:29 15 August 2018 | UPDATED: 15:29 15 August 2018
An Ipswich family have been left devastated after a drug which could improve their son’s quality of life was not recommended for the NHS by a drugs watchdog.
Six-year-old George Woodward has spinal muscular atrophy: a condition that makes the muscles grow weaker, his family believe this new drug could improve his life significantly.
The drug in question, called Nusinersen or Spinraza, is said to boost the proteins that George lacks and help to stabilise his condition for a time.
“We are seeing George slowly deteriorate and lose abilities he had,” said George’s mother Laura Barber.
“To be told sorry it’s not available on the NHS, it’s devastating. It’s heartbreaking.”
NICE, the National Institute for Health and for Care Excellence, who advice the NHS on approval of drugs said that they had noted the benefits of nusinersen but were concerned about its long term effects.
They added:“The cost of nusinersen is also extremely high.”
The drug, produced by the company Biogen, currently costs £75,000 per vial with users requiring four doses in the first few month, followed by maintenance doses every four months.
Meindert Boysen, director of the centre for health technology evaluation at NICE, said: “We are actively engaging with Biogen to discuss how they might address the uncertainties identified by the committee, while demonstrating the potential for nusinersen to be considered cost effective and managing the risk to the NHS of allowing access to this treatment.”
For George’s family the devastation is compounded by the fact the drug has already been approved for use in the United States and Europe.
The family believe the best they can hope for now is that the final decision recommends approval for specific age groups which is already the case in Denmark.
“If we could I would take him anywhere,” said Miss Barber, “George’s future without this drug is not good.”
NICE say they are looking at ways they can offer the drug possibly in this way known as managed access arrangement which could reduce the cost.
In the meantime the family say they will battle to get George help.
“We will just keep fighting,” said Miss Barber, “we have fought this long.”