Topics: Orkambi listed on the PBS for cystic fibrosis patients
Now, back in May, I was absolutely overwhelmed by people getting in touch with me about cystic fibrosis and medication for cystic fibrosis, in particular, one known as Orkambi. Now, I got email after email after email and given that my history with cystic fibrosis goes back almost 20 years when The Wolverines published that song that I supported, 65 Roses.
The story of a couple of small kids, one with cystic fibrosis, one without it who couldn’t quite understand what it all meant. At the time I spoke to federal Health Minister Greg Hunt, who assured me he’d look into Orkambi and the gap on the PBS. Well, over the course of the weekend we had some outstanding news. The federal Health Minister, Greg Hunt, is on the line. Minister, good morning.
And good morning, Ray.
Well, what did the Prime Minister with you yesterday?
So we announced that Orkambi, which is a real breakthrough medicine for cystic fibrosis will be on the PBS from 1 October. That means it’s on the Pharmaceutical Benefits Scheme and instead of $250,000 a year for the families of young kids and young adults, it’ll now be $39.50 or $6.40 a script.
And perhaps, most importantly, it will be available as of today on compassionate access, free of charge in the meantime for all of the 1,200 children and families that quality. So it’s something we negotiated, we made it a part of the agreement with the company and they’ve agreed. And I met and the Prime Minister met kids yesterday who aren’t on the medicine, who would be on it hopefully as of this week.
I, over the years, have come into contact with sufferers with cystic fibrosis. Beautiful, young people whose lives have been greatly reduced by CF. I heard on the news last night, and I don’t want to call it a miracle drug because you and I have spoken about the need for the research to continue, but someone said in the news last night this could extend the lives of those young people by decades. Is that right?
That’s correct. So it will have different effects on everybody, I want to be very honest about that. But this is a medicine that has improved lung capacities in the case of one mum I met yesterday, whose daughter had been on the trial, by 17 per cent. And what it does is it aims to stop the deterioration and in some cases, significantly increase lung capacity. The other thing is as part of the agreement, there’s a new next generation drug which is being trialled in the United States and we will be one of the earliest countries in the world in two or three years’ time .
I hope, I can’t guarantee that but I hope to get access to that medicine as a result of this agreement. And so what this means is right now, a dramatically important medicine for 1200 young Australians and their families and in two to three years’ time, one of the earliest countries in the world to have access to an even better, even stronger medicine. So I just saw the tears, the joy, the absolute sense of one brilliant, young girl, Kate, who’s 14 years old who spoke yesterday saying ‘wow, I have my whole future ahead of me now for the first time’.
I think I shared this with you if not on-air, certainly, I’ve sent them to your office. One came from Moree and this was on 8 May. Thank you for acknowledging and discussing the plight of CF. The compassion and empathy you showed this morning brought a tear to an eye. Our five-year-old son has CF. We nervously await the decision regarding Orkambi and then he goes into talk about it.
And then perhaps, the one that I remember best was from a grandmother. It’s with a heavy heart today I write to you on behalf of all CF sufferers and their families. Thank you in asking the minister to react, Mr Hunt. My heavy heart is prone to outbreaks because of a phone call from my son and daughter-in-law last night. My 11-year-old granddaughter came to them with a problem. In tears she explained how she’d been researching about her disease, cystic fibrosis, and then she read she had a life expectancy of only 35.
Between sobs, my granddaughter explained how she’d been carrying this burden, she’s only 11, for a month, not being able to talk to mum and dad about it. How difficult, Ray, to explain to your child or grandchild she might not live a long life like her two sisters who are free of the disease. The parents have handled it well. They explained to her that research is looking very promising and of course, the one that’s unaffordable, which becomes affordable this week, Orkambi, is one of the keys. That came from a grandma and Greg, it would just absolutely tell you apart had you not made the decision that you made and congratulations for doing it.
No, look here, I may never be involved in anything more important in my professional life. It’s one of those ones where we worked with the company, we’ve spoken with the global Deputy CEO. I’ve met them when I was in America, and we’ve pushed them to put the submission in that to have the evidence that the independent medical experts needed and to be realistic.
And most importantly, it’s one of those cases where it’s been driven by the real-world needs of Australian families but we got there. And for all of the kids, for all of the families, literally, this is one of those things that makes a profound difference to their entire lives.
Congratulations. Thank you so much and we’ll talk again soon.
Thanks to you as well, Ray, for your work on that.
Thanks, Greg. Greg Hunt, federal Health Minister. Fantastic news for sufferers with cystic fibrosis and their families like that dad and like that nan.