Why huge crowds stormed the Sunrise set this morning
The backdrop of Sunrise was crowded with people holding red balloons and signs covered in the word “Orkambi” this morning.
Why? The group of more than 100 were advocating for the lifesaving cystic fibrosis drug Orkambi to be put on the government’s Pharmaceutical Benefits Scheme (PBS).
Cystic fibrosis is a genetic disorder that causes fatal lung damage. Less than half of people with cystic fibrosis live to 40.
Orkambi, which currently costs $250,000 a year, is the only drug available in Australia to treat the cause of the most common strain of cystic fibrosis.
The Pharmaceutical Benefits Advisory Committee (PBAC) has voted against putting Orkambi on the scheme on three separate occasions. However, they have maintained it is the pharmaceutical company that’s making things difficult.
In August 2017, a spokeswoman for the federal Department of Health said they had offered Vertex Pharmaceuticals $100 million in compensation but the company refused.
Vertex said the government’s $100 million compensation offer is a 90 per cent discount on the drug and that their offer is placing them in an “impossible position”.
Sunrise hosts Natalie Barr and David Koch addressed the huge crowd standing behind them on the show.
“We’ve got a lot of friends here at Brekky Central this morning,” Barr said.
Sunrise shared the story of the Barrett family, whose three-year-old son Connor has cystic fibrosis and is already taking 20 different medications a day.
His mum Taryn said the price of Orkambi was “crushing” for her and her family.
“When he was first diagnosed we were told about this medicine, and that it’s a big game-changer, so to know that there’s a medicine that treats the underlying cause of the disease which has been developed, that’s really exciting for us,” Taryn told the ABC.
“But then to be told that no, Australians won’t be able to be given access to it, because it’s too expensive, that’s just crushing,” she said.
Kochie implored on TV for Vertex to “come to the party”.
“Another side of the story is to get something listed on the PBS, it has to be cost-effective and that drug company, according to the government, has to bring that price down. They’re charging a lot,” Koch said on air this morning.
“This is a life-changing drug that helps a lot of people but the pharmaceutical companies have got to come to the party as well.
“They just can’t bump up the prices and expect everyone to pay for it too,” he said.