Delighted to be here at the Great Strides Fun Run. Today is about great strides for patients with cystic fibrosis.
To be here with Nettie Burke and Karin, who are representing the cystic fibrosis community, with David and Tom, who are two of our great Australian medical researchers and clinicians for patients with cystic fibrosis, and with Jane and Xavier, two of our wonderful, beautiful cystic fibrosis patients.
I am delighted to announce that from the first of December, the Australian Government will list two new medicines, Symdeko and Orkambi, on the Pharmaceutical Benefits Scheme for patients with cystic fibrosis.
These medicines would otherwise be $250,000 a year, and will now be available for as little as $6.50 a script.
That means real hope, quality of life, extended life and an extraordinary outcome for wonderful cystic fibrosis patients and their families.
In particular, Symdeko will be available for patients aged 12 and above on medical advice. Orkambi will be extended to patients aged between 2 and 5.
And so this is immensely important news for families. It is literally a breath of life for families and for patients, and it’s one of the things you can do if you have a strong economy and guarantee the listing of these wonderful new medicines.
I do want to also say, this is a moment where we can look forward to the next thing and the next thing. The triple combination therapy, which will be even better and even stronger, will help give patients a long, rich, full life over and above what we have here.
And so this means that compassionate access, for free, from tomorrow, Pharmaceutical Benefits Scheme listing from the first of December.
So immediately all of the patients who will benefit from these medicines can access these medicines.
Were these two drugs previously available for people of other ages or were they only trials?
Orkambi has been available to older patients and it will now be available to the younger patients. Symdeko has not been available in Australia.
All up, we expect up to 1400 patients to benefit from new or improved medicines.
Can we just get your first and last name and your title, please, for the tape?
Nettie Burke, Cystic Fibrosis Australia, CEO.
What does today mean to you and your organisation?
Today is yet another amazing milestone.
We believe that every Australian has the right to have a healthy life and a regular life and a long life, and drugs like Orkambi and Symdeko do just that.
We are incredibly lucky to have a Minister that understands that. And this will give people with CF two extra decades of life, and that is a great celebration.
Have you spoken to people who are going to receive this drug? What does it mean to those people personally?
I have, and I’ve been speaking to them for quite a while, while we were waiting for the PBAC approval and all of those sorts of things.
And I have to say one of the common threads is tears, and they were tears of: get this drug for us, and now they’re tears of absolute, you know, they’re thrilled, it’s happiness.
You imagine, you’ve got a young child who might be starting school shortly. If they don’t have these types of drugs they can’t, because they will get sick, they’ll end up in hospital and their life will be shorter.
For adults, they can finish their education, they can get a job and work full time, they can get married, they can have babies, they can have sex, you know. It’s great, this is what these drugs give.
That’s really good.
What does announcing it an event like today, where everyone’s here and listening, what’s that like?
I think it’s fitting. All of the people here will benefit from the Minister’s announcement today, so we should be here and we should be with our community, and we should all be hugging each other and just saying how lucky we are to live in Australia.
We are the envy of the rest of the world.
My colleagues overnight found out what was going to happen, and they’ve been calling and, tell you what, those Brits are not happy.