Life­saver drug now free

North Coast Times - - NEWS - Lucy Jarvis

A MIN­DARIE fam­ily have wel­comed the ad­di­tion of a drug their son has tri­alled to the Life Sav­ing Drug Pro­gram (LSDP).

The Fed­eral Government re­cently an­nounced that Vimizim will be avail­able at no cost to Aus­tralian pa­tients who have Morquio A Syn­drome from Au­gust 1.

Health Min­is­ter Greg Hunt said the treat­ment cost about $400,000 a year, putting it out of reach for many chil­dren with the disease.

“Peo­ple born with the syn­drome are ei­ther miss­ing, or don’t have enough of, a cru­cial en­zyme needed to break down long chains of sugar mol­e­cules,” he said.

“As a re­sult they have ab­nor­mal de­vel­op­ment and a pos­si­ble early death.”

So­nia An­to­nio wel­comed the news, as her son Coby (15) has the rare ge­netic con­di­tion and had been us­ing the en­zyme re­place­ment ther­apy for al­most four years, given to him com­pas­sion­ately by the man­u­fac­turer.

“We’re ec­static, a huge weight has been lifted from our shoul­ders,” she said.

“Now we have peace of mind know­ing he has this for life. Coby An­to­nio and his mother So­nia.

“His mus­cle tone, strength and stamina have all in­creased dra­mat­i­cally which makes him hap­pier in him­self.

“He’s also able to do more ac­tiv­i­ties and keep up with his peers.

“There’s also all the in­ter­nal ben­e­fits that we can’t see

that’s go­ing to give him such a bet­ter qual­ity of life.”

Mrs An­to­nio said the list­ing meant other chil­dren with Morquio A would also have ac­cess to the drug.

“It’s the best news that these kids can start treat­ment at a young age,” she said.

“We have gen­uinely been over­whelmed by all the sup­port for ev­ery­one who has backed the Morquio fam­i­lies in this fight.

“We en­cour­age any other fam­i­lies to fight if they end up in the same sit­u­a­tion.

“We never thought when we started our fam­ily that we would have to plead for med­i­ca­tion for our son’s life but you just do it and keep fight­ing.”

Mr Hunt said Vimizim was only the 13th drug added to the LSDP.

“Be­fore ac­cess­ing this new drug, pa­tients will need to un­dergo a clin­i­cal assess­ment and then yearly checks to en­sure Vimizim treat­ment con­tin­ues to be ef­fec­tive and ap­pro­pri­ate for their con­di­tion,” he said. “It will cost $44 mil­lion over five years to treat 20 chil­dren.”

Man­u­fac­turer BioMarin said it was aware of 21 Aus­tralian pa­tients liv­ing with Morquio A.

“The list­ing of Vimizim in Aus­tralia un­der­scores the con­sid­er­able ef­fort made by the en­tire Morquio A, mu­copolysac­cha­ri­do­sis and rare disease com­mu­ni­ties, who have worked tire­lessly with BioMarin to en­sure Aus­tralian pa­tients could se­cure ac­cess to Vimizim,” BioMarin Aus­tralia man­ager Kathryn Evans said.

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