Boy hop­ing NHS will fund drugs

HealthH chiefs’ life-chang­ing de­ci­sion

Buckinghamshire Advertiser - - NEWS - Byb Tom Herbert tom.herbert@trin­i­tymir­ror.comt

A FAM­ILY is wait­ing on a li life-chang­ing de­ci­sion fr from NHS Eng­land chiefs who are to de­cide whether or not to fund a b break­through drug.

As the Advertiser went to press, Archie Hill, from G Ger­rards Cross, who suf­fers fr from rare mus­cle wast­ing co con­di­tion Duchenne m mus­cu­lar dys­tro­phy, is wait­ing to hear news about new drug Translarna.

Translarna, which be­came the first drug to ad­dress the un­der­ly­ing cause of Duchenne mus­cu­lar dys­tro­phy, was ap­proved for use in the EU in Au­gust last year.

It has been avail­able in sev­eral Euro­pean coun­tries since last year, but par­ents in the UK have had to wait to hear the news if NHS Eng­land will fund it.

Archie’s mum Louisa said: “It would just mean so much for all those boys.

“I’m not go­ing to give up. I’m go­ing to keep go­ing.

“I just want some an­swers, and what you can do to get it li­censed here.”

Mrs Hill is ‘50/50’ about whether she thinks the drug will get li­censed.

She said: “It’s just so im­por­tant. There’s a drug out there that will al­low Archie to be a child for a lit­tle bit longer. If it’s a no I will keep fight­ing and I re­ally won’t give up. We will get there. I’m on a mis­sion.”

Peter Sut­ton, pol­icy and cam­paigns of­fi­cer at Mus­cu­lar Dys­tro­phy UK, said: “Cur­rently, the only treat­ment usu­ally given to chil­dren is steroids. How­ever, these are ac­com­pa­nied by se­vere side ef­fects, in­clud­ing mood swings, weight gain and thin­ning bones.

“Clin­i­cal tri­als of Translarna in­di­cate it would keep chil­dren walk­ing for longer and de­lay the need for a wheel­chair. How­ever, in or­der to ac­cess the drug these chil­dren must still be walk­ing. Time is so tight – ev­ery day of de­lay means chil­dren come closer to los­ing the abil­ity to walk and thus in­el­i­gi­ble for Translarna.”

Che­shamandAmer­sham MP Ch­eryl Gil­lan said: “For fam­i­lies like the Hills, ev­ery mo­ment is pre­cious and I hope that the fund­ing re­view will be com­pleted with the ut­most speed.”

Mrs Hill added: “I’m go­ing to do all I can. I’m go­ing to keep on fight­ing. I just do it for Archie and I want to make a dif­fer­ence for all the boys.”

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