11-year-old's call for Orkambi wonder drug supported by MP

Richard Benyon visits class of cystic fibrosis sufferer following letters from pupils

A WEST Berkshire schoolgirl said she is pleased that politicians will consider making a life-changing ‘wonder drug’ available for her and thousands of others living with cystic fibrosis (CF) in the UK.

Tilly Green and her parents Ross and Nikki are fighting to make Orkambi available on the NHS.

The 11-year-old is currently taking around 40 tablets a day to manage the condition.

Earlier this year, Tilly’s class at Bradfield Primary School wrote to Newbury MP Richard Benyon asking for him to support their friend and campaign for the drug to be made available in this country.

He subsequently raised it in Parliament and encouraged a debate on the matter.

Mr Benyon visited Tilly and her schoolmates at Bradfield last Friday, where he was quizzed on his knowledge of Orkambi and about being an MP.

The MP said he had become “emotionally involved” in the campaign and that people would need to have a heart of stone to not be moved by it.

He said: “I’m a dad, I have got five children. I know how worrying it is for parents when you have a child who is not well and how frustrating it is when you know they could be better.

“I think that’s something worth getting involved in.

“There are one or two things where you can make a difference.

“I’m not saying me personally can make an entire difference on this particular issue, but with you and Tilly’s mother and everyone else fighting this campaign, I think we will get there and that’s a good reason to get up in the morning.”

CF causes thick, sticky mucus to build up in the lungs, digestive tract and other areas of the body.

Those with the condition have an average life expectancy of about 37.

Research has shown that Orkambi can slow the decline in lung function, the main cause of death in CF sufferers.

Orkambi, which is already available in several countries, including Ireland, Germany and the US, is currently only prescribed to people in the UK with CF on compassionate grounds.

The Government is currently embroiled in a financial battle with US drug giant Vertex, which turned down NHS England’s £500m offer last summer.

When asked by Tilly whether he had signed the petition, Mr Benyon said he had not.

“Politicians can’t sign petitions,” he said. “We can, but it’s a bit silly when you are the one who needs to take it through government.”

Mr Benyon said he was hopeful of success, but added: “I’m always not one for raising expectations.

“I wouldn’t want to come here and give you certainty that we can. It’s in a better position than other drugs.”

Parliament is set to debate the Orkambi issue on June 10 and Mr Benyon said that he would definitely attend the debate if he was around.

Speaking to the Newbury Weekly News about Mr Benyon’s support, Tilly said: “I’m really excited and really pleased that he said that he can.

“It’s nice to know that we can have someone from Parliament supporting us.”

And on the Orkambi campaign, she said: “I think it’s going really far. It’s nice to know that Parliament is focusing a bit on this and there’s a lot of support going on.”

Tilly’s mother Nikki said: “I think it’s fantastic that he has come out and spent time with the children. I hope that he can continue to support it.”

Teacher Hannah Dennis said that it was great for the children to see that their writing had made an impact.

She said: “We talked about asking questions without being forceful or aggressive. He answered all their questions and didn’t skirt over everything.”