A seven-year-old South Tyneside schoolgirl’s heartfelt words of wisdom could this week alter the course of a national fight over a cystic fibrosis wonder drug – second time around.
Nancy Corr, whose sister Harriet, four, has the life-limiting genetic condition, has written to PM Theresa May, imploring her to make costly Orkambi available on the NHS.
Her letter will be handed to the Prime Minister at Downing Street on Thursday as part of an ongoing campaign to have the drug funded by the health service.
The heartfelt letter reads: “Dear Mrs May, one year I wrote you a letter to ask for some special medicine for my sister.
“Harriet has CF and needs Orkambi.
“If you get this medicine for her we will all be very happy.
“Please can she have it now?"
A year ago, Mrs May promised swift action around the drug after Nancy’s first letter – and those of other people affected by cystic fibrosis – were delivered to her.
The NHS is in long-running talks with Orkambi manufacturer Vertex Pharmaceuticals to strike a deal to reduce the £104,000 annual per patient cost of the treatment.
Parents Emma and Chris Corr, of Wansbeck Road, Jarrow, say they hope Nancy’s words will refocus Mrs May’s mind on the potentially life-changing negotiations.
English teacher Emma, 38, said: “This marks the one-year anniversary of the PM promising a ‘speedy resolution’ to our situation and clearly that hasn’t happened.
“As Harriet is only little and can’t write, her sister Nancy wrote a letter to her last year to ask for Orkambi for her sister.
“This year Nancy has written another which will be one of those handed in on Thursday.
“This is big week for our campaign, and we need the PM to really listen and action now. Orkambi has the power to change lives and it must now be made available.”
The letter will be wrapped in a bunch of 65 yellow roses when they are handed to the PM by campaigners.
The use of flowers to highlight the drug fight 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.
The Corrs have been heavily involved in attempts to get Orkambi sanctioned on the NHS, winning the support of Jarrow MP Stephen Hepburn, who has spoken in parliament on the issue.
Orkambi, which corrects faults in the lungs on a cellular level rather than just treating the symptoms, is available in many countries after governments came to price deals Vertex.
It works by helping water and salt pass normally out of the lungs of people with the most common type of the condition.
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 £500million 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.