Hope springs with new sub­sidy

Midland Reporter - - Front Page - www.com­mu­ni­typix.com.au d485907

Mt He­lena res­i­dent Toby (8) now has more hope of liv­ing a longer life af­ter the de­ci­sion to make Orkambi, a rev­o­lu­tion­ary drug for cys­tic fi­bro­sis, pub­licly avail­able. Mum Melissa Gib­son said prior to the drug be­ing made avail­able on the PBS it cost $250,000 a year. She said Orkambi would change her son’s life.

THE lives of thou­sands of Aus­tralian chil­dren and adults liv­ing with cys­tic fi­bro­sis (CF) will im­prove fol­low­ing last week’s de­ci­sion to make a rev­o­lu­tion­ary drug pub­licly avail­able.

The Phar­ma­ceu­ti­cal Ben­e­fits Ad­vi­sory Com­mit­tee (PBAC) an­nounced on Fri­day a deal with Ver­tex Phar­ma­ceu­ti­cals to make a life­sav­ing drug called Orkambi ac­ces­si­ble.

It was the phar­ma­ceu­ti­cal com­pany’s fourth sub­mis­sion to have the ex­pen­sive drug listed on the ben­e­fits scheme for pa­tients 12 years and older and its first sub­mis­sion for pa­tients six to 11 years old.

Both sub­mis­sions were ac­cepted and the an­nounce­ment was met with celebration from fam­i­lies across the coun­try who had been cam­paign­ing for the move.

Be­fore Orkambi was on the scheme, it cost pa­tients $250,000 a year.

Mt He­lena par­ents Melissa and Justin Gib­son re­joiced at the news, know­ing their eight-year-old son Toby would now have hope of a longer life.

Toby, who was born with the rare ge­netic con­di­tion, has two copies of a gene mu­ta­tion that Orkambi tar­gets.

Mrs Gib­son said the drug would be “life al­ter­ing” for Toby, en­abling him to ex­pe­ri­ence a bet­ter qual­ity of life through im­proved lung func­tion and less hos­pi­tal ad­mis­sions, and pre­vent fur­ther lung dam­age.

Cys­tic Fi­bro­sis WA (CFWA) chief ex­ec­u­tive Nigel Barker said the de­ci­sion was a cul­mi­na­tion of years of ad­vo­cacy by peo­ple whose lives had been im­pacted by CF to force an agree­ment be­tween the gov­ern­ment and Ver­tex.

“We are ec­static that the Aus­tralian Health Sys­tem is sup­port­ing bet­ter health out­comes and qual­ity of life for those with rare dis­eases, but we’re also con­cerned that lives have been put on hold and lungs have in­curred ir­re­versible dam­age whilst we strug­gle to get a fair deal, years be­hind ap­proval in the USA and Europe,” he said.

“There has to be a bet­ter way to fast track the process of drug ap­proval.”

CFWA pres­i­dent Caz Boyd, who was born with two copies of the gene mu­ta­tion that Orkambi tar­gets and had a lung trans­plant at 27, said she was grate­ful that the jour­ney for young­sters liv­ing with CF would be dif­fer­ent from hers.

“If this drug was avail­able 24 years ago I wouldn’t have needed a lung trans­plant and wit­nessed the lives of many child­hood CF friends cut short by this in­sid­i­ous dis­ease,” she said.

Pic­ture: David Baylis

Pic­ture: David Baylis www.com­mu­ni­typix.com.au d485907

Melissa Gib­son, whose eight-year-old son Toby has CF, is over­joyed that Orkambi has been ac­cepted into the Phar­ma­ceu­ti­cal Ben­e­fits Scheme.

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