Fam­ily ‘gut­ted’ by treat­ment de­lay

No de­ci­sion on mus­cu­lar dys­tro­phy drugs un­til 2016 but fight goes on

Buckinghamshire Advertiser - - FRONT PAGE - By Tom Herbert tom.herbert@trin­i­tymir­ror.com

A FAM­ILY has been left frus­trated af­ter NHS Eng­land chiefs post­poned the de­ci­sion to fund a break­through drug for Duchenne mus­cu­lar dys­tro­phy.

Nine-year-old Archie Hill, from Ger­rards Cross, will now wait for a de­ci­sion to be made by the Na­tional In­sti­tute of Health and Care Ex­cel­lence (NICE) with no an­swer ex­pected un­til next year.

Mum Louisa Hill said: “He is an amaz­ing kid and just said ‘ mummy, I’m sad be­cause you’re sad’.

“We are ab­so­lutely gut­ted, we have worked con­tin­u­ally hard and fought men­tally too in the last nine months and we were speech­less when we found out. It’s all very raw at the mo­ment but my com­mu­nity has been so amaz­ing and we’ve been in­un­dated with mes­sages.”

Fam­i­lies have been wait­ing since last sum­mer for a de­ci­sion from NHS Eng­land on whether it will fund the drug.

Robert Meadowcroft, chief ex­ec­u­tive of Mus­cu­lar Dys­tro­phy UK said: “While boys in many EU coun­tries have ac­cess to this treat­ment, boys here are now de­nied ac­cess to the only avail­able treat­ment af­ter months of be­ing kept in sus­pense.

“Translarna could give boys pre­cious ex­tra time walk­ing for longer. Some boys are now at high risk of los­ing the abil­ity to walk be­fore NICE’s as­sess­ment. Our fo­cus now is to sup­port par­ents af­fected by this de­ci­sion through the wait­ing pe­riod, and to ex­plore all al­ter­na­tives.”

The char­ity was due to meet NHS Eng­land yesterday (Tues­day).

Chair­man of the all-party par­lia­men­tary group for mus­cu­lar dys­tro­phy, MP David An­der­son said: “We have failed these boys and their fam­i­lies un­for­giv­ably. Translarna is an ex­am­ple of why this area ur­gently needs re­fin­ing in Eng­land and Wales.”

Mrs Hill added: “I would say to all those fam­i­lies fight­ing, don’t give up be­cause we will make a dif­fer­ence.

“Don’t be dis­heart­ened and don’t let them win. We do it for Archie and all the boys who are el­i­gi­ble for Translarna.”

LONG WAIT: Archie Hill will have to wait un­til next year to learn if he can have ac­cess to Duchenne mus­cu­lar dys­tro­phy break­through drug Translarna on the NHS

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