Dad 'incredibly happy' that son can access new drug

The father of a boy with a muscle-wasting disease has said he is "incredibly happy" that his son will now get access to a new drug after more than a year campaigning.

Ben, from Henley-on-Thames, is battling Duchenne Muscular Dystrophy (DMD) - a condition which progressively worsens as those with the condition age.

The drug Givinostat, has shown positive results in slowing the conditions development, but was only previously available through an early access programme in certain NHS Trusts.

Earlier this month, the independent body responsible for approving drugs for NHS use announced that givinostat would be widely available across the country - including for Ben.

"The joy of it is that it is a drug that is approved, and Ben is still eligible," his father Alex, who has campaigned for greater access to the drug, said.

"The campaigning that we've done and the hard work that's gone and got them to really push what is happening in the background has put us in a position where actually there will not be a huge delay in Ben getting access to the medication."

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.

Givinostat, is a potential treatment for DMD that can help slow the condition, according to Muscular Dystrophy UK.

"The clinical outcomes of this drug are proven to show that it slows the progression of the condition," Alex said.

Alex said 12-year-old Ben was currently still able to walk, whilst using a wheelchair for longer distances.

"The possibility that he would be able to walk and get out of his chair and be amongst his friends through his whole school career I think will have a huge positive impact on him, his mental health, his inclusion and our family as well," Alex said.

Alex had spent years campaigning for Ben's local NHS Trust, Oxford University Hospitals (OUH), to sign up for the givinostat early access scheme.

"I'm incredibly happy with the outcome, but it has been a hard fight," he said.

"This battle over the last 14, 16 months - it's pretty much brought me to my knees at times where you fight and you fight and you fight."

"Coming out the other side of it now is a sense of relief - but there's still work to be done though."

OUH chief medical officer Andrew Brent welcomed the decision by the National Institute for Health and Care Excellence (NICE) to approve the widespread use of givinostat.

"In preparation for this, we have put governance in place and recruited the additional staff required to support this new treatment, and are on track to start treating eligible patients with givinostat in the next few weeks in line with the NHS commissioning timeline," he added.