It's just not fair.
And it's heartbreaking to have to go and say that
"Dad, there's a price on your life."
I'm on Keytruda.
That's the only thing that they know of that will work at the moment
so I just keep taking the drug until they can come up with something else.
When we go back to our own workplace
and we're dealing with somebody who has a condition that we're thinking
yes, well, my patient might have actually benefited from this drug
but the PBAC didn't actually fund it,
and I was part of that committee which made that decision,
that can be a difficult situation to be in.
Is it going to distress patients
if they have no financial means to fund it
when you know that potentially more effective treatment is out there?
I think it's taken a big toll on our family.
Everybody was quite worried at first.
I'd have to reassure them that I'm not quite dead yet.
A few years ago, in his early 30s, Jay was diagnosed
with a rare cancer of the eye called intraocular melanoma.
When I was first diagnosed I was seeing an ophthalmologist.
He took a look in my eye,
told me that there's only one thing that grows in your eye
and that's cancer.
In some ways it's brought everyone closer together.
Jay used to work a lot.
He'd work weekends, he'd work during the week.
He took some time out from work
just to focus on his health
and we went on holidays and things as a family,
which is something we didn't really do before.
Just making memories.
We wanted to make sure we made the most
of what time we have left as a family.
The doctors were doing everything they could to try and help him.
Jay's cancer is tough to treat.
Chemo and radiotherapy aren't an option.
We've tried some other medications
and they weren't helping.
And then they put me on Keytruda.
Jay has been using immunotherapy drug Keytruda
for a few years.
It's just one of three types of immunotherapy drugs
available in Australia.
The drug manufacturer is covering the cost of his treatment
on compassionate grounds.
He's just received his 53rd treatment.
Most people don't even last that long on the treatment,
so he's done really well.
Keytruda is one of a new breed of medicines
known as immunotherapy drugs.
It basically works by helping the body's own immune system
fight the cancer cells.
A 2017 clinical trial found 22% of patients with Hodgkin's Lymphoma
went into remission.
But it's expensive.
The drug company charges about $9000 a treatment every three weeks,
which can total over $100,000 a year.
The government subsidises that cost
for only some types of cancer.
The field of immunotherapy is evolving so fast.
While we know from the clinical trial
that it can work for the patient in front of us
we can't access it
and I think the dilemma is how do we talk to patients about that?
Is it going to distress patients
if they have no financial means to fund it
when you know that potentially more effective treatment is out there?
Dad was a very lovable rogue, you could call him.
He was a very nice man,
he'd give you the shirt off his back if you needed it.
He was very generous.
Dad didn't have a lot.
Genevieve and her dad Eric
were about as close as a father a daughter could be.
His diagnosis of a rare type of head and neck cancer,
Adenoid Cystic Carcinoma,
was devastating for both of them.
After I found out Dad had stage 4 cancer,
and I found out it was a rare cancer,
one that hadn't had much treatment,
no one knew much about it,
I did a lot of research
and I found that there were these immunotherapy drugs such as Keytruda
that could help his particular cancer.
But because Eric's cancer is so rare
Keytruda isn't subsidised by the government for treatment.
For about five months Genevieve got support from a charity
to pay for it but after that she was on her own.
I had to sit down with Dad and I had to tell him there was no more money
and that we couldn't get any more treatments.
He was very upset that
life pretty much had an end date now for him.
Dad was in a nursing home
when he passed away.
And it was not a very nice death.
Dad was very sick
and just after Father's Day
Dad said, his last words to me being
that I wish I could give you a hug,
I wish I could hold you in my arms,
but I can't do that, I'm too weak.
What was the last thing you told him?
I told him I loved him.
I sat with him and I...
I lay next to him and I cried next to him
and I told him I loved him.
And that everything he did for me was not in vain and...
that... he was my best friend.
If you could afford it do you think he'd still be alive?
I think he would have lasted a lot longer.
And I think the quality of life that he would have had in the end
would have been a lot better than what ended up happening.
It's just frustrating when he'd be sitting there getting that treatment
at $9000 and someone would be sitting next to him and getting it for $38.
And you look at it and it's just not fair.
The government subsidises medicines
under the Pharmaceutical Benefits Scheme or PBS.
For anything on the PBS
the government will pick up almost all of the tab,
usually patients only pay $39.50 or $6.40 for pensioners.
Last year the PBS cost taxpayers over $12 billion.
That's doubled over the last ten years.
The group that recommends which drugs make the list
is a panel of experts known as the PBAC.
What they weigh up is the cost vs the likely benefits.
I guess it's human nature
that we all want to try something that might be helpful.
Professor Jennifer Martin knows how difficult it is
to deny treatment because money or evidence are limited.
She is a clinical pharmacologist and used to sit on the PBAC.
We work in a system where there is a constrained budget
and we do always have to look at the maximal health gain for a population.
I struggle with that as a doctor
because I have to make the best decision for my patient.
Does it feel like a moral conundrum at times?
The difficulty I think most clinicians have in that setting
is that a decision is made on standard criteria,
standard cost effectiveness analysis,
but when we go back to our own workplace
and we're dealing with somebody who has a condition that we're thinking
yes, well, my patient might have actually benefitted from this drug,
but the PBAC didn't actually fund it
and I was part of that committee which made that decision,
that can be a difficult situation to be in.
This is a relatively new drug.
What do we know about its efficacy?
A lot of these new immunotherapies have come into Australia
on what's called a fast-track approval overseas.
And that means that they've been approved for use
on much smaller amounts of clinical data.
I guess the problem is that
it takes the government a long time to decide
whether from their point of view
it's worthwhile funding a particular drug in that indication.
You can't pick and choose who can receive treatments
when there's a treatment that's there.
Even if it helps one life, that's one life that you've saved and...
every life is worth saving.
So do you think they should approve these drugs, I guess,
across the board for cancer patients?
Oh, that's a very controversial question.
From my perspective I think the hardest thing
is that the cancer types that have the most unmet needs
are typically cancer types that are relatively rare.
And if you have a rare cancer
then it's hard to gather enough evidence
for PBAC to fund such types of cancer,
which is desperately needed.
Every time a drug-maker
wants a treatment subsidised for one specific cancer
the PBAC has to weigh in.
Later this week the group will consider how to subsidise these drugs
for multiple cancer types
in a way that doesn't overburden the taxpayer.
It's like you're putting a price tag on who can live and who can die.
It's just not fair.
And it's heartbreaking to have to go and say that
"Dad, pretty much, there's a price on your life."