Health chiefs pledge to families of cystic fibrosis after South Tyneside schoolgirl writes heartfelt letter to PM Theresa May

Health chiefs have insisted they are doing all in their power to help cystic fibrosis sufferers in South Tyneside by bringing a ‘wonder’ drug to market – a day ahead of a new campaign arriving at Downing Street.

By Gareth Crickmer
Tuesday, 14 May, 2019, 16:34
Harriet Corr and sister Nancy and the letter Nancy has written to PM Theresa May.

They say they will soon reopen negotiations with the maker of Orkambi, which has been proven to relieve symptoms of the life-limiting condition and is available in numerous other countries.

The Department of Health and Social Care (DHSC) reaffirmed its claim that further government talks are planned with Vertex Pharmaceuticals, the maker of Orkambi.

It spoke out after Emma and Chris Corr, of Wansbeck Road, Jarrow, said it was time for “swift” government action to secure a deal for the use of the drug on the NHS.

The couple, whose four-year-old daughter Harriet has the life-limiting condition, have been long-term campaigners for Orkambi to be licensed.

In a statement to the Gazette, the DHSC said: “We want all patients to have access to the best medicines at a price the NHS can afford.

"NHS England negotiate deals for all new medicines independently from Government and they will meet with Vertex again soon to identify ways of getting this treatment to those who need it as soon as possible."

Campaigners claim negotiations restarted two months ago, but say confidentiality has restricted public updates.

In response, Mrs Corr, 38, an English teacher, said: “All we wish for is, to quote Prime Minister Theresa May last year, is a ‘speedy resolution.’

“Cystic fibrosis is progressive and patients do not have the luxury of time to wait.”

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It is among a batch, wrapped in 65 yellow roses, being presented on behalf of people whose families have been affected by cystic fibrosis.

The use of flowers stems from 1965 when a four-year-old boy in the US pronounced cystic fibrosis as ‘65 roses’ when he overheard his mother talking about the condition.

Orkambi works by correcting faults in the lungs on a cellular level rather than just treating the symptoms.

The drug helps water and salt pass normally out of the lungs of people with the most common type of the condition.

It is available in numerous countries whose governments came to price deals Vertex.

Three months ago, the UK government was urged to break the talks deadlock by invoking a special clause to free Orkambi from strict patent laws.

It can do so under Crown Use, a little known system that allows intervention around a product for the benefit of the nation and could lead to other drug firms making a cheaper version of Orkambi.

The NHS has offered to pay Vertex £500m over the next five years, a sum rejected by the firm as being too small.

A recent parliamentary Health and Social Care Committee recommended the government should establish an interim deal with Vertex until full arrangement is agreed.

Around 10,000 in the UK suffer from cystic fibrosis.