Drug to benefit son delayed by bureaucracy, dad says

A father fighting to prolong his son's life has said the vital medicine he needs is available for free but "bureaucracy is standing in the way".

Ben, from Henley-on-Thames, is battling Duchenne Muscular Dystrophy (DMD) - a devastating and progressive muscle-wasting disease.

The 11-year-old's dad, Alex, said a new drug that could slow his son's incurable condition down is not being offered due to "budgetary and cost constraints" in the local NHS.

Oxford University Hospitals NHS Foundation Trust (OUH) said it was "engaging actively" in discussions about the potential treatment.

An OUH spokesperson said: "We understand that this is a very worrying and difficult time for Ben and his family. The provision of Givinostat is under discussion and review nationally.

"We are engaging actively in these discussions, including with partner organisations."

Alex said Ben had reached an age where he was "starting to feel his body fail him".

DMD is an inherited genetic condition that gradually causes the muscles to weaken, leading to an increasing level of disability.

People with the condition usually only live into their 20s or 30s, according to the NHS.

"One of the most tragic things about it is that these boys will learn a whole lot of life skills around physical movement and the ability to get around, and then as they progress through they start to lose the ability to walk," Alex said.

"It's an all round challenge for Ben to deal with on a daily basis, but he does it with a big smile on his face, so we're very proud of him."

Givinostat, which was approved for use in America earlier this year, is a potential treatment for DMD, according to Muscular Dystrophy UK.

The anti-inflammatory drug is currently being assessed by UK regulators, and is available early, for people who meet a strict criteria, on the NHS.

Local NHS trusts must individually apply to take part in the Early Access Programme, something Alex said is "not happening here [in Oxfordshire]".

He said that "short sighted" thinking about cost was being prioritised over the long-term impact of a "better quality of life for these boys who are marginalized because their rare disease".

"We have been on our Duchenne journey with Ben since 2017, and in that time, there has not been a single drug come to market and available, funded on the NHS, that Ben could access," he said.

"Here is one that he would benefit him, and the frustration is really, really, really high because with boys with Duchenne, time is muscle.

"The longer we wait for something, the less chance there is that they'll be able to access it."

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