News

Barooga family overjoyed by drug listing

by
February 09, 2017

Treatment future in doubt: Rebecca Nye, who's son Mack has cystic fibrosis, is disappointed a decision to put life-saving drug Kalydeco on the PBS for young children has been delayed.

A ‘game-changing’ medication which can improve the lives of young children suffering cystic fibrosis will soon be available on the Pharmaceutical Benefits Scheme, with the news delighting one Barooga family.

Rebecca and Jamie Nye’s 11-month-old son Mack was diagnosed with cystic fibrosis, a progressive condition where a thick layer of mucus builds up in organs, at five weeks old.

Last week, she spoke to the Courier about concerns with a delay on the PBS listing of Kalydeco for children aged two to five, a drug which can extend the life expectancy of someone with cystic fibrosis for a further 19 years.

It’s expected eligible children aged two and older will have early access from this week, while details of the listing are finalised.

Without the PBS, Kalydeco, which is the first drug in the world to address the underlying causes of CF, costs about $300000 per year, making it unobtainable for many families.

Mrs Nye said they were totally shocked by the announcement.

‘‘We had no idea that negotiations were even taking place at this stage,’’ she said.

‘‘We are so grateful to Vertex and the Minister for Health, Greg Hunt, for making this a priority.

‘‘Mack will now be eligible for Kalydeco from the time he turns two.

‘‘The subsidy ensures that he will have access to this remarkable medication and give him the chance to live a long and healthy life.

‘‘We are extremely thankful for the continued support we have received from the community.’’

It’s understood families could only have to pay as low as $6.30 per script, rather than the full cost of $300000.

It could also mean sufferers will only need to take about 10 tablets per day, rather than about 60 to 80.

The listing comes after increased pressure and lobbying from the cystic fibrosis community and increasing media attention.

In a statement issued yesterday, Kalydeco’s manufacturer Vertex said it was delighted for children with CF and their families after an agreement was reached with the Australian government.

‘‘We know this will be welcomed by parents, family members and friends who have been seeking this medicine for their children,’’ Vertex Australia country manager Eilis Quinn said.

‘‘Because early intervention is critical to preventing damage, we will be providing early access to the medicine for all eligible children while the Department of Health finalises the administrative arrangements for PBS listing over the next three months.

‘‘Working closely with the CF clinics around Australia we hope to make Kalydeco available from this week.’’

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