Partly Cloudy

Partly Cloudy

max temp: 13°C

min temp: 9°C

Search

“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

Six-year-old George Woodward Picture: LAURA BARBER

Six-year-old George Woodward Picture: LAURA BARBER

Archant

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.

George Woodward
pictured with mum Laura, dad Lee and sister ivy Picture: LUCY TAYLORGeorge Woodward pictured with mum Laura, dad Lee and sister ivy Picture: LUCY TAYLOR

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.”

Clouds will be few and far between today as the sun shows its face over Suffolk.

A Colchester man accused of being part of a gang of men armed with stun guns who burst into a flat occupied by two sex workers has admitted using a stolen bank card belonging to one of the women.

With Christmas around the corner, Suffolk has retail temp jobs a plenty - but which jobs in other sectors are getting increasingly tough to fill?

An Ipswich man who sexually assaulted a schoolgirl has been jailed for four months.

A special fire service vehicle is taking to the streets of Suffolk highlighting the range of work and opportunities within the service.

Over the Christmas and New Year period we all struggle to keep a lid on our waste - the food bin groans under the weight of turkey carcasses and our blue recycling bulges with empty boxes from trikes and new games consoles so the last thing you want is to miss your rubbish collection.

Suffolk police seized a higher volume of crack cocaine than any force outside the Met last year, according to new figures.

Most read

Show Job Lists

Newsletter Sign Up

Sign up to the following newsletters:

Sign up to receive our regular email newsletter

Our Privacy Policy

MyDate24 MyPhotos24