Mother takes fight for med­i­ca­tion to the Dáil

The Kerryman (North Kerry) - - NEWS - By TADHG EVANS

THE Kerry mother of a six-year-old girl with a rare ge­netic dis­or­der said she is de­lighted fol­low­ing her par­tic­i­pa­tion in a pre­sen­ta­tion in Dáil Éire­ann as part of a del­e­ga­tion call­ing for HSE and Govern­ment ap­proval of drug Ku­van.

Ber­nadette Gil­roy’s daugh­ter Maria was di­ag­nosed with PKU just 10 days af­ter birth. She was lim­ited for life to a low-pro­tein diet, an ex­tremely im­por­tant mea­sure for PKU suf­fer­ers, who can­not break down a cer­tain part of pro­tein, ex­pos­ing them to risk of se­vere in­tel­lec­tual dis­abil­ity and po­ten­tial phys­i­cal dis­abil­ity.

Mrs Gil­roy – who lives in Moun­thawk, Tralee, with Maria, hus­band Michael, and 10-year-old son Ethan – ex­plained to The Ker­ry­man, how­ever, that stud­ies show ex­ist­ing di­etary ther­apy, while ef­fec­tive, does not nec­es­sar­ily pre­vent prob­lems in­clud­ing bone-mass re­duc­tion, nu­tri­tional deficits, growth re­tar­da­tion, weight prob­lems and neu­rocog­ni­tive deficits. She also ex­plained that the drug Ku­van, which has not yet been ap­proved in Ire­land due to cost is­sues, can en­hance meta­bolic con­trol, re­duce neu­rocog­ni­tive deficits and al­low more flex­i­bil­ity with the chal­leng­ing diet.

“Sev­eral stud­ies show that many peo­ple strug­gle to stick con­sis­tently to the diet, par­tic­u­larly as they get older,” she said. “Maria’s diet is made up of three com­po­nents: a syn­thetic pro­tein drink that pro­vides 90 per cent of her nu­tri­tion; a daily al­lowance of nat­u­ral pro­tein that’s con­tin­gent on weekly blood tests; and med­i­cated foods pre­dom­i­nantly made of starch.

“In­ci­dence of PKU in Ire­land is unusu­ally high, and the drug it­self is man­u­fac­tured just over the border in Cork. The NCPE has twice de­cided not to rec­om­mend it on cost grounds, even though it has been ap­proved in 19 coun­tries in the last decade. This means Ir­ish cit­i­zens with an Ir­ish con­di­tion can­not ac­cess an Ir­ish-man­u­fac­tured drug.”

The next step in the cam­paign for PKU will be taken by Mrs Gil­roy tonight as she ap­pears on The Pat Kenny Show be­tween 10pm and 11pm on TV3, which she hopes will be as well re­ceived as the pre­sen­ta­tion she was part of on Thurs­day last.

“Avail­able re­search and in­for­ma­tion tells us that Ku­van’s cost-ef­fec­tive­ness could be stronger than sug­gested. Pa­tients would need less of the med­i­cated foods they cur­rently take, and an­other study shows that PKU suf­fer­ers us­ing half the rec­om­mended dosage en­joyed en­hanced qual­ity of life.

“The feed­back we got from a great turnout of TDs and Sen­a­tors last Thurs­day was very pos­i­tive, and by all ac­counts our pre­sen­ta­tion had a big im­pact. Fur­ther in­for­ma­tion on this con­di­tion is avail­able at, or the PKU As­so­ci­a­tion of Ire­land Face­book page.”

Ber­nadette Gil­roy will ap­pear on The Pat Kenny Show to ar­gue the need for Ku­van to treat her daugh­ter’s PHU di­ag­no­sis

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