Bromsgrove girl to be treated after NHS announces cystic fibrosis drug - The Bromsgrove Standard

Bromsgrove girl to be treated after NHS announces cystic fibrosis drug

Bromsgrove Editorial 1st Nov, 2019 Updated: 1st Nov, 2019   0

A BROMSGROVE girl will finally get the treatment she needs after the NHS announced it will distribute a life-extending drug for cystic fibrosis.

Charlotte Robinson, aged 3, was diagnosed with the condition in 2016 following a heel prick test when she was just days old.

Parents Aiden and Sophie had their worlds turned upside down when they were told their daughter probably wouldn’t see out her 20s.

But after months of talks, NHS England has finally reached a deal with US manufacturers Vertex Pharmaceuticals over the sale of drug Orkambi.




Patients who have a certain type of cystic fibrosis, which Charlotte does, will be able to get treated with Orkambi within 30 days.

“We’re over-the-moon and completely lost for words,” said Aiden.


“I found out through my brother who sent us a screenshot of an article which explained the NHS had finally agreed a money deal with Vertex.

“We are delighted, however we are still waiting to hear what the actual agreement is and how NHS England is going to prescribe the medicine out to patients.

“I know they will need to prioritise people who are more ill first which, of course, is more than fair enough. But it will be an agonising wait all the same.”

Before the announcement Aiden and Sophie had no other option but to try and fundraise tens of thousands to buy the drug abroad.

The money they raised through their Just Giving page will instead be donated to charity Cystic Fibrosis Trust.

“It’s only right that we give back to the charity which has helped many people over the years,” added Aiden.

“This medication will hopefully increase Charlotte’s life expectancy and help with the functionality of her lungs and gut.”

It is estimated about half of the 10,000 patients in the UK with cystic fibrosis will benefit from the drug.

Cystic fibrosis is a life-shortening genetic condition that can cause fatal lung damage.

Approximately one in 2,500 babies born in the UK will have the condition.

Only about half of those with the condition live to the age of 32.

For more information visit www.cysticfibrosis.org.uk .

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