So happy now I’ve won fight for pills I need

Daily Express - - News - By Chris Riches

A CYS­TIC fi­bro­sis suf­ferer has thanked the Daily Ex­press af­ter our bat­tle for jus­tice led to her re­ceiv­ing life-sav­ing drugs.

We have urged US drug­mak­ers Ver­tex and doc­tors for months to help Ni­cole Adams ac­cess the spe­cial­ist CF drug Symkevi.

Ni­cole, at the best of times, has only a 20 per cent lung func­tion but flu has seen it plunge to just 13 per cent, leav­ing her bed­bound and on oxy­gen at Belfast City Hospi­tal.

She rang us a fort­night ago, plead­ing: “I’m so scared. I’m dy­ing. What can I do?” Now af­ter re­peated

Daily Ex­press sto­ries plus pres­sure from CF groups and her boyfriend Ciaran McVarnock, she was given Symkevi on Mon­day.

Ni­cole, 28, of New­town­abbey, County Antrim, said: “I want to thank all the read­ers of Daily Ex­press.

“I would be nowhere with­out the sup­port of them, as well as my Ciaran and all the CF com­mu­nity.

“It has been a few scary weeks – but things are go­ing to change now. This lit­tle blonde girl isn’t a quit­ter.

“I took my first Symkevi tablets on Mon­day and I felt so happy and re­lieved, like a weight has been lifted.

“I haven’t had any tem­per­a­tures in 72 hours, so hope­fully my flu has gone.”

Ni­cole was di­ag­nosed with CF at three months old but she lived a re­mark­ably fit and ac­tive life­style.

She was North­ern Ire­land disco-danc­ing cham­pion three years run­ning, a gym­nast and a cheer­leader.

She be­came a hair­dresser and, in­cred­i­bly for a CF suf­ferer, did not need any hospi­tal ad­mis­sion un­til she was 22 years old.

But on a trip to Asia in 2014, she de­vel­oped a Burkholde­ria cepa­cia in­fec­tion – the rare bac­terium is re­sis­tant to many drugs.

Ni­cole’s lungs are stricken with the bug but doc­tors will not let her have a trans­plant. In 2017, she was given free com­pas­sion­a­teuse of CF won­der drug Orkambi but it dis­agreed with her. But she was bizarrely re­fused the newer Symkevi, de­spite meet­ing all cri­te­ria, and has strug­gled since last sum­mer.

In Septem­ber, we first spoke to Ni­cole as she fought in vain for Symkevi via Ver­tex’s com­pas­sion­a­teuse scheme which sup­plies the costly drugs for free to pa­tients whose lung func­tion falls re­peat­edly be­low 40 per cent.

In Oc­to­ber, the Daily Ex­press cru­sade fi­nally saw

his­toric NHS deals for Orkambi and Symkevi struck across the UK.

We then launched a new cam­paign to see the newer, up­com­ing Trikafta drug made widely avail­able next year on the NHS when li­censed in June.

Boxer Ciaran said: “What a fighter. But Trikafta is what she re­ally needs.”

Health­care is de­volved in North­ern Ire­land, so Health Sec­re­tary Matt Han­cock has been pow­er­less to in­ter­vene on Ni­cole’s be­half.

Belfast City Hospi­tal has re­fused to re­ply to re­peated re­quests for in­for­ma­tion.

No quit­ter...Ni­cole Adams started the new drug this week

Stricken...Ni­cole when flu re­cently re­duced her lung func­tion to 13 per cent

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