Fam­ily take drugs fight to health min­is­ter

Work­ing for faster ac­cess to new treatments

Buckinghamshire Advertiser - - NEWS - by Tom Her­bert tom.her­bert@trin­i­tymir­ror.com Twit­ter: @TRHer­bert

THE PAR­ENTS of a young boy suf­fer­ing from mus­cu­lar dys­tro­phy took their fight to White­hall with the back­ing of their MP.

Gary and Louisa Hill, par­ents to Archie from Chal­font St Peter, and Ch­eryl Gil­lan, MP for Che­sham and Amer­sham, lob­bied Health Min­is­ter Lord Prior of Bramp­ton, who is the par­lia­men­tary un­der sec­re­tary of state for health, in their cam­paign for faster ac­cess to emerg­ing treatments.

Along with Nic Bun­gay, direc­tor of cam­paigns, care and in­for­ma­tion at Mus­cu­lar Dys­tro­phy UK, they met with Lord Prior of Bramp­ton at the Depart­ment of Health of­fice on Thurs­day Oc­to­ber 13.

Mrs Hill said: “It has been dev­as­tat­ing watch­ing my son’s con­di­tion worsen while reg­u­la­tors stalled and de­layed on ap­prov­ing a drug that could make all the dif­fer­ence to him.

“We need to make sure the NHS fast tracks ac­cess to these drugs as soon as they be­come avail­able.”

Mrs Gil­lan said: “The en­tire Hill fam­ily have cam­paigned non-stop to speed up the ac­cess to drugs such as Translarna which can help boys like Archie.

“They en­dured tortu- ous de­lays through the process of ap­prov­ing Translarna for pre­scrip­tion on the NHS in Eng­land.

“There are other drugs un­der de­vel­op­ment which could help young pa­tients.”

Mr Bun­gay said: “We hope that, by throw­ing their weight be­hind the cam­paign, we will be able to get more Duchenne drugs ap­proved and we’ll see even more boys like Archie ben­e­fit from these new emerg­ing treatments.

“The Translarna drug fund­ing de­ci­sion was a ma­jor step for­ward in the fight to beat Duchenne mus­cu­lar dys­tro­phy.

“And the bat­tle con­tin­ues with the de­vel­op­ment of at least two more drugs – Ex­ondys 51 and Rax­one – which will help even more peo­ple af­fected by this dev­as­tat­ing con­di­tion.

“The ap­proval process for Translarna took well over three years: there must not be a re­peat of these de­lays this time around. Ev­ery day counts for pa­tients and their fam­i­lies.

“We be­lieve the Govern­ment must act as quickly as pos­si­ble to en­sure that these po­ten­tially life-chang­ing drugs can be ap­proved in the UK with­out de­lay.”

Mrs Gil­lan said: “De­lays are ag­o­nis­ing for any pa­tient, but for chil­dren and their par­ents the anguish is com­pounded.”

The ap­proval process took well over three years. There must not be a re­peat of these de­lays

Cam­paign: Pic­tured left to right are Gary Hill, Ch­eryl Gil­lan MP, Louisa Hill and Nic Bun­gay of Mus­cu­lar Dys­tro­phy UK. Left, Archie Hill

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