‘De­ci­sion needs to be made’ over medicine to com­bat mus­cle-wast­ing

Buckinghamshire Advertiser - - FRONT PAGE - by Tom Her­bert tom.her­bert@trin­i­tymir­ Twit­ter: @TRHer­bert

CHE­SHAM and Amer­sham MP Ch­eryl Gil­lan has urged health min­is­ter Ge­orge Free­man MP to push NHS Eng­land for a pos­i­tive de­ci­sion over mus­cu­lar dys­tro­phy drug Translarna.

How­ever, Mr Free­man said that while he has re­quested the de­ci­sion to be ‘ex­pe­dited’, he is lim­ited to what he can do.

Mrs Gil­lan used a Com­mons de­bate to throw her weight be­hind a cam­paign to make life­trans­form­ing med­i­cal care avail­able for peo­ple with mus­cle-wast­ing con­di­tions.

The cam­paign heav­ily in­volves one of her con­stituents, 10-year-old Archie Hill, from Ger­rards Cross.



from Duchenne mus­cu­lar dys­tro­phy and, along with his fam­ily, has been bat­tling to gain ac­cess to Translarna.

His cam­paign­ing has in­volved, among oth­ers, de­liv­er­ing a let­ter to the Prime Min­is­ter with Mrs Gil­lan ap­peal­ing for fast ac­cess to the drug.

The ge­netic ther­apy is the first avail­able in the EU for Archie’s con­di­tion and could help keep him walk­ing for longer.

But the Hills have waited more than a year for a de­ci­sion on NHS fund­ing for the drug.

Mrs Gil­lan also called for guide­lines for health­care pro­fes­sion­als on sup­port­ing the 70,000 peo­ple in the UK with mus­cle-wast­ing con­di­tions, to make sure they do not miss out on life-trans­form­ing care.

Dur­ing the de­bate she said: “Archie has great stamina and he has spent whole days here cam­paign­ing, march­ing up to Down­ing Street and telling the prime min­is­ter what he wants and what the prime min­is­ter should do about it. Quite frankly, he is one of the pluck­i­est lit­tle spir­its that I have ever met in my life.

“For the Hill fam­ily and Archie, and for all the other chil­dren and their par­ents at this time of year, if the Min­is­ter could ask NICE (the Na­tional In­sti­tute for Health and Clin­i­cal Ex­cel­lence) to bring for­ward a pos­i­tive de­ci­sion on Translarna, it would be the best Christ­mas present any par­ent or child could get.”

Mr Free­man said: “[Mrs Gil­lan] is a tena­cious ad­vo­cate on this is­sue, as on oth­ers. I join her in pay­ing trib­ute to Archie and his fam­ily. I have met pa­tients who suf­fer from th­ese diseases and their fam­i­lies, and one’s heart goes out to them. One wants to pay trib­ute to the brav­ery with which they deal with their con­di­tions.

“I have re­quested that the Translarna de­ci­sion, which I be­lieve is due in Fe­bru­ary, is sim­i­larly ex­pe­dited. How­ever, again, that is not in my gift, and while dur­ing the year the prime min­is­ter and I have urged NICE and NHS Eng­land to do ev­ery­thing they can to ex­pe­dite their de­ci­sion making on those drugs.”

Nic Bun­gay, di­rec­tor of cam­paigns, care and in­for­ma­tion for Mus­cu­lar Dys­tro­phy UK, said: “We are very grate­ful to Ch­eryl for speak­ing out in Par­lia­ment on be­half of Archie and the thou­sands of fam­i­lies liv­ing with mus­cle-wast­ing con­di­tions.

“The Hills have en­dured a year-long wait for news about NHS fund­ing of Translarna. This is un­ac­cept­able. The health min­is­ter must act and also en­sure other break­through drugs for Duchenne mus­cu­lar dys­tro­phy and other con­di­tions are not plagued by sim­i­lar de­lays.

“It is vi­tal that ev­ery child and adult has ac­cess to the right care and sup­port, wher­ever they live. We would like to thank Ch­eryl for re­mind­ing the Min­is­ter that this is why guide­lines for mus­cle-wast­ing con­di­tions must be in place.”

Lob­by­ing: Archie Hill meets David Cameron in ap­peal over drug

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