RAY HADLEY:
Over the past couple of weeks I had a number of people, in fact many, being in contact with me about cystic fibrosis medication. Now, in relation to cystic fibrosis, probably 15 or 16 years ago I was part of a song put together by The Wolverines called 65 Roses which won them a Golden Guitar, and at the time I had contact with many young sufferers with cystic fibrosis, including a beautiful young girl from the Hunter Valley named Ria, a young girl who used to ring me regularly and since then that dreaded disease has taken Ria’s life.
So I have some compassion for those families and children affected with cystic fibrosis. They keep mentioning a drug to me called Orkambi and they want it put on the Pharmaceutical Benefits Scheme. I said I’d represent their concerns to the federal Health Minister and I’ll do that right now because he’s in our Canberra studio. Federal Health Minister Greg Hunt, good morning to you.
GREG HUNT:
Good morning, Ray.
RAY HADLEY:
Do you know much about Orkambi? Because I know nothing about it.
GREG HUNT:
So Orkambi is a very important new drug in relation to cystic fibrosis. Last year we were able to list a drug called Kalydeco, a breakthrough which applies to member of the cystic fibrosis community. A bigger drug which is currently going through the medical authorities is Orkambi. It’s due to go before what’s called the Pharmaceutical Benefits Advisory Committee, but think of it as the independent medical experts, in July.
I am very, very, very hopeful that they will list it and if they list it, I’m guaranteeing- if they recommend it, I’m guaranteeing today we will list it, just as we’ve done with amazing new medicines for breast cancer and for the just catastrophic conditions, spinal muscular atrophy, nearly a billion dollars of investment in the last few days. We will list it if the medical experts recommend it and my belief is improving every day that that’s likely to happen.
RAY HADLEY:
Okay and it’s undergone clinical trials, is that correct as well?
GREG HUNT:
Yes, yes. It comes out of a company called Vertex in America and they’ve done clinical trials around the world and we’re working very closely with Cystic Fibrosis Australia.
So I am very hopeful, very hopeful and I want to say that directly to the cystic fibrosis community and I don’t like to create false hope that we will have a positive recommendation from the independent medical experts, and if that happens we’ll list it.
RAY HADLEY:
Immediately?
GREG HUNT:
We're preparing right now to be in a position to make the fastest possible listing and I'm hopeful that in fact we'd be able to get compassionate access immediately whilst we're doing the listing which would be an extraordinary breakthrough.
RAY HADLEY:
Okay, now what does it actually do for those suffering with cystic fibrosis?
GREG HUNT:
So what it does is it improves the lung function. So in other words it makes it easier to breathe. It does that by retarding the way in which the fibrosis expands and continues and makes life harder and harder for children and others. And what's also important though is it's not just an improvement in itself, it's a pathway to a whole new drug which is currently being considered by the US independent medical experts called the FDA.
And what I want to do is not only have a pathway for Orkambi but to bring forward at the fastest possible time this new drug in America which apparently has massive, massive life changing benefits. Orkambi protects you and improves, but this one will go dramatically towards giving people back their lives.
RAY HADLEY:
So the one that's being considered by the FDA in the US, what, extends the lives by a greater period, is that what we're talking about?
GREG HUNT:
Well, we don't have all the medical data on that but the advice that I have is Orkambi is a great breakthrough. The new drug is likely if it gets through the FDA, and again we're getting good mail on that, likely to give incredible capacity and function back to cystic fibrosis sufferers.
So we want to get them the earliest possible access to Orkambi and also bring to Australia at the earliest possible date the next generation breakthrough medicine once that's available as well.
RAY HADLEY:
Okay, I just want to- and I appreciate your time and I appreciate the sincerity in your voice about this, but I just want to share with you the sort of emails I've got and I won't name the people because of privacy issues relating to children.
We want you to talk to the Minister to please add the drug Orkambi to the PBS list, and you’ve told us you’ll do that as soon as you get the all clear from the medical experts. And this is from a grandmother, Minister: My heart is heavy after receiving 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 she'd been researching, as children do, about her disease cystic fibrosis.
She suddenly realised she had a life expectancy of only 35. Between sobs, my granddaughter explained she'd been carrying this burden around for a month not being all to talk about it. How difficult to explain to your child or your grandchild they might not live a long life, as her two sisters will free of the disease.
The parents handled it as well as they could, explaining to their daughter that research is looking very promising. There's a drug out now that will prolong her life and that of many cystic fibrosis sufferers and that drug of course is the one we're talking about, Orkambi.
Now you give more hope to those people by telling them there's another one being looked at as we speak by the FDA in the USA that may in fact be even better. So that's the sort of email I've been getting. And for us to walk a day in their shoes you just wouldn't do it. You wouldn't do it.
GREG HUNT:
And I understand absolutely, which is why we moved heaven and earth to list this new drug for spinal muscular atrophy. As soon as that was approved by the medical experts, by law we can only list drugs once they're approved by medical experts ...
RAY HADLEY:
I understand that.
GREG HUNT:
And that was a $240 million listing, but it's not the money, it’s meeting with families and seeing the results, and we will do the same with Orkambi. And I am very, you know, I'm sending a very clear message here.
RAY HADLEY:
Sure, I understand you ...
GREG HUNT:
I am very very confident that this will get a positive recommendation.
RAY HADLEY:
You can’t pre-empt it but you can’t be any more confident than you are at the moment. I understand that. Now just for the benefit of this now and other parents and grandparents, a timeline. I know you can’t bustle the medical experts, but are we looking at a matter of weeks, months or maybe ‘til to the end of the year. Can you give us any hope?
GREG HUNT:
So July is the hearing and what we’re really hoping is that we can negotiate with the company an immediate compassionate access. That means immediate access for every qualifying patient in the country.
I’m working quietly on that, not so quietly now that I’m talking with you, but that’s fine, I think it’s important that the cystic fibrosis community knows that, you actually wonder what keeps a minister up at night - this. It’s the new medicines and the new listings and getting them there and that’s actually one of the great responsibilities and passions that I have in this job.
RAY HADLEY:
Well, it’s nice to know that you have that passion and compassion for it. Look, just without notice, a question from one of my listeners, John. John, are you there?
CALLER JOHN:
Yeah.
RAY HADLEY:
Yeah look, you have a son with cystic fibrosis. You are having a different problem. Just explain it to me and we’ll see what we can do.
CALLER JOHN:
Well my son applied for the NDIS, and the first application was knocked back because he was told that cystic fibrosis is curable because he can have a lung transplant. Not all children get lung transplants and he reapplied and they knocked him back again.
And all he’s after is some help with his home care, the physio. And like, my son’s not the only one. I know other people whose kids are knocked back, and what an insult to people with cystic fibrosis to say it’s curable. It’s a non-curable disease. He’ll die before I will.
RAY HADLEY:
How old’s your boy now John?
CALLER JOHN:
He’s 28.
RAY HADLEY:
Okay, John, leave it with me, okay? Leave it with me. I agree with you entirely. I agree with you entirely. You’re looking at a lung-heart transplant for people to survive, and that’s not right. Stay there, John, just so I can get your details. Okay? And we’ll talk to you personally about that. Minister, that doesn’t quite sound right to me, that- I mean …
GREG HUNT:
No, that sounds as if someone, somewhere in the bureaucracy has not seen things as they should be. I would love to get, through you, John’s details after the program.
RAY HADLEY:
I’ll do that.
GREG HUNT:
We will speak with him, and then speak with the NDIS team within the Government. I think that’s …
RAY HADLEY:
Yeah, that’s appropriate.
GREG HUNT:
Let’s just see what we can do.
RAY HADLEY:
It was a very emotional call at the end.
GREG HUNT:
I think we can probably help. I could hear just the pain that John had.
RAY HADLEY:
Yeah, well, as I said, we wouldn’t walk a day in his shoes. Anyway, look, we’ll come back to you closer to this momentous decision in July, but I think people have gleaned from your sincerity today that all we need is that big tick from those medical experts and the next step will be cystic fibrosis sufferers having access to Orkambi, and then we’ll probably talk later about this other wonder drug that’s being developed now and looked at by the FDA into the future.
GREG HUNT:
It’s a pleasure.
RAY HADLEY:
Okay. Thanks very much for your time.