Mum’s ap­peal over life-chang­ing drug

‘Everolimus has given him the qual­ity of life he never had’

The Scarborough News - - FRONT PAGE - by Martina Moscariello news­ Twit­ter: @TheS­car­boroNews

A Scar­bor­ough boy who suf­fers from a rare ge­netic dis­or­der will have his lifechang­ing med­i­ca­tion taken away as a re­sult of NHS Eng­land’s de­ci­sion not to fund it.

Rhys Mallinson, of Newby, was born with Tuber­ous Scle­ro­sis Com­plex (TSC), a con­di­tion that leads to growths, which are be­nign tu­mours, in var­i­ous or­gans.

As a con­se­quence of the con­di­tion, the 11-year-old suf­fers from se­vere epilepsy, autism and ADHD and he has the men­tal de­vel­op­ment of a 12- to 18-month-old.

Four years ago, he started tak­ing Everolimus, a drug used to con­trol re­frac­tory epilepsy, on a trial ba­sis and since then his qual­ity of life has dras­ti­cally im­proved.

Rhys’s mum, Jo Par­rott, said: “Over the years Rhys has tried more than 10 epilepsy med­i­ca­tions but none have re­ally helped.

“We were out of op­tions and didn’t know what else to do so we were re­ferred to the TS clinic at Alder Hey Chil­dren’s Hos­pi­tal in Liver­pool and that’s when he was given Everolimus. Be­fore he was on

‘Just think of how much money would be saved if an am­bu­lance didn’t have to take Rhys to hos­pi­tal three times a week’ Mum Jo Par­rott

the drug he would go to hos­pi­tal two or three times a week with pro­longed seizures. Now, I can’t even re­mem­ber the last time he was in hos­pi­tal. He still has seizures ev­ery day but they’re not as bad as they used to be.

“This drug has given him the qual­ity of life he never had.”

In March 2018, NHS Eng­land con­sulted on draft guid­ance which stated that there was “enough ev­i­dence” to con­sider mak­ing Everolimus avail­able as an add-on treat­ment for TSC-re­lated seizures.

How­ever, on Sat­ur­day July 7 – just less than a month after the Scot­tish Medicines Con­sor­tium (SMC) rec­om­mended Everolimus us­ing the same ev­i­dence base as NHS Eng­land – a de­ci­sion was made to not fund the treat­ment leav­ing Rhys’s fam­ily in shock.

Jo said: “I was dev­as­tated, I re­ally thought they were go­ing to make it avail­able. At the mo­ment Rhys is con­tin­u­ing with the trial but I don’t know how long it’ll be go­ing on for.

“I dread to think what his life is go­ing to be like if he comes off the drug.”

Max­ine Smeaton, chief ex­ec­u­tive of the Tuber­ous Scle­ro­sis As­so­ci­a­tion, the only UK char­ity that sup­ports peo­ple af­fected by the con­di­tion, said: “NHS Eng­land’s de­ci­sion to ig­nore the ev­i­dence base and feed­back from ex­perts treat­ing and liv­ing with TSC is dis­ap­point­ing be­yond words. The dif­fer­ence that Everolimus makes to the lives of peo­ple with the con­di­tion who have re­frac­tory epilepsy is un­prece­dented, and the TS com­mu­nity in Eng­land will be dev­as­tated by this news.”

An as­sess­ment re­port es­ti­mated that the an­nual cost of pro­vid­ing Everolimus to el­i­gi­ble adults and chil­dren liv­ing with TSC in Eng­land would be just un­der £60 mil­lion.

“I think it’s just about money,” Jo said, “but just think of how much money would be saved if an am­bu­lance didn’t have to take Rhys to hos­pi­tal three times a week. It’s just a case of de­cid­ing what’s cheaper – keep tak­ing him to hos­pi­tal or give him the drug?”

A spokesper­son for NHS Eng­land said: “The panel of doc­tors, clin­i­cians, and the pub­lic as­sessed Everolimus for re­frac­tory seizures as­so­ci­ated with tuber­ous scle­ro­sis com­plex and con­cluded that it de­liv­ered limited ben­e­fits com­pared to other treat­ments be­ing con­sid­ered.

“This treat­ment can be con­sid­ered again for fund­ing in Novem­ber but drug com­pa­nies have an im­por­tant part to play by pric­ing their treat­ments re­spon­si­bly.”

Rhys Mallinson and mum Jo Par­rott. Pic­ture: Richard Pon­ter 1837112a

Rhys Mallinson and mum Jo Par­rott. Pic­ture: Richard Pon­ter 1837112b

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