Minister Butler doorstop in Adelaide - 27 November 2022

Read the transcript of Minister Butler's doorstop on new Pharmaceutical Benefits Scheme medicines for high cholesterol, chronic heart failure, and a potentially life-threatening blood cell condition.

The Hon Mark Butler MP
Minister for Health and Aged Care

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MINISTER FOR HEALTH AND AGED CARE, MARK BUTLER: Thanks very much for coming this morning. Can I thank Calvary for hosting us at their wonderful new hospital in the city, as well, on a Sunday morning and particularly thanks to Terry and Andrew for joining us today who are going to talk about their own experiences and the degree to which these new listings are going to change their lives, and we have also some clinicians to answer the really difficult questions about what it all means.  

But the Albanese Labor Government was elected on a platform of delivering cheaper medicines to Australian patients, and we're delivering on that promise. Only back in July, the maximum amount that millions of pensioners and concession card holders would pay for medicines across a year was slashed by 25%, meaning that those millions of Australians across the year will pay no more than $4.70 per week for all of their medicines needs. And in September, the price of more than 2000 brands of medicines was cut, again, delivering about $130 million back into the pockets of hardworking patients. And as I've said many, many times we've passed legislation through the Parliament now, which means that on the 1st of January, we will deliver the biggest cut to the price of medicines in the 75-year history of the Pharmaceutical Benefits Scheme, delivering about $200 million back into the pockets of Australian patients each and every year.  

But right through this period since the 1st of July, we've made 54 new or amended listings on the Pharmaceutical Benefits Scheme, which means that patients are getting access to new life changing, often lifesaving medicines that without a listing on the PBS would simply be out of reach for almost every Australian family. And I'm delighted today to announce a number of new and amended listings that will also take effect on the 1st of December – so Thursday this week. And we're here to talk about what that means for a couple of patients. Just a couple of examples of the thousands and thousands of patients who from Thursday will gain access to two of these new medicines which are going to have a profound impact on their life.  

The first medicine is Verquvo which is a medicine to treat symptomatic chronic heart failure which is a major cause, not only of debilitating disability for many Australians, but a major cause of hospitalisation. About 180 Australians are hospitalised every single day with symptomatic chronic heart failure. And they are often repeated hospitalisations, as well. This new medicine, as the clinicians, I'm sure will explain, relaxes and widens blood vessels in the heart, which means that more oxygenated blood is delivered through the body breaking that cycle of disability and breaking that cycle of repeated hospitalisation. This is a new medicine for the PBS, we think about 10,000 patients will benefit from this listing every single year. And without the listing on the PBS, they would be paying about $1,900 per course of treatment. On the PBS, of course, the maximum they will pay is $42.50 or from the 1st of January just $30 per script.  

The second is an amended listing to a medicine that's already on the PBS - a medicine called Repatha, which is a treatment for particularly stubborn high cholesterol. And again, this will have a huge impact on about 10,000 patients per year who will now qualify being able to get access to this medicine through their treating general practitioner rather than having to go to a specialist. Now that will have a huge impact particularly for people who are living in rural and regional Australia, or even in our outer suburbs in the cities who don't have ready access to a specialist. And it will also mean more timely access to this medicine that has a very profound impact on stubbornly high cholesterol which as we know, is a major driver of heart disease as well, again, around 10,000 patients every year benefiting from this amended listing, who would otherwise be paying about $3,700 for every course of treatment, again, now will pay just $42.50 or $30 from the 1st of January. These listings - about 54 - that we've done since just the 1st of July, are having a really profound impact on many tens of thousands of Australian patients and a really important part of our promise - delivering on our promise back in the May election - to deliver cheaper medicines to Australian patients. 

ASSOCIATE PROFESSOR CARMINE DE PASQUALE, CALVARY HOSPITAL HEART AND VASCULAR: Thank you, Minister Butler. There are a myriad of insults to the heart that results in heart failure, most commonly heart attack, but also virus, viral illnesses, genetic problems, high blood pressure, lifestyle, things like obesity, illicit drug abuse, excess alcohol, all insult the heart and lead to more heart failure. And as the Minister mentioned, we see more and more heart failure, and we'll continue to. Unfortunately, this disease takes away the things that we take for granted. So the ability of patients to ask anything more of their heart than basic things - to walk from here to there, to shower to bend over in the garden. And then as it gets worse, it can end up being not being able to lie flat, shortness of breath, a feeling of oppression and shortness of breath, lying - just being recumbent - having to sleep in a chair. We call those decompensation episodes.  

Unfortunately, we haven't got a cure for heart failure. And it's a progressive disease, one that gets worse over the years, but we have many impactful treatments that help patients greatly. And Verquvo is one such new advance, and it works in a different way. And it's a good story. It starts off with basic science, and researchers thinking about heart failure, thinking about what makes it worse, what makes it better. Then industry, pharmaceutical industry coming up with a new chemical, a new agent that theoretically standing on the shoulders of that basic science might help this condition, then a collaboration between industry and academia to do a clinical trial with the appropriate scientific rigor to see if it works, see if it's safe.  

And that trial was performed, there was a worldwide study of over 5000 patients, we were involved in it in Australia, we were involved in it in South Australia, and the investigators in the trial, like me, approached their patients and told them about the trial. And these patients put themselves in the hands of science, often and quite likely to no direct benefit to themselves - to take either the drug or placebo. They don't know, the doctor treating them doesn't know. And there were 5000 of those patients and many Australians there. And then a year and a half ago, the trial was presented and published and it is safe, it is tolerable. And most importantly, it reduces the endpoint that the trial was looking for of making patients get hospitalised less for heart failure, and reducing mortality. So it's a good story. It's the way the system is supposed to work and the way the system usually works. It goes through the TGA. So there's enough scientific rigor in that trial for the TGA to say “you doctors in Australia can use this on Australians”. And then as Minister Butler's just announced a different decision based on cost benefit analysis that we as taxpayers can pay for this drug for these patients. And we all will benefit from that. It's a good story. It's the way it's supposed to work. And I think we're lucky to have it. 

JOURNALIST: Can you just walk us through how the medicine works? And how you how you take it?  

ASSOCIATE PROFESSOR DE PASQUALE: Minister Butler explained that very well, actually maybe better than I will explain it, certainly with all else on his mind. So it's a new axis that instead of dampening down responses, physiologic responses in the body that increase and make the heart failure worse - remember, I said it's a progressive disease - it actually strengthens a defence mechanism that does it a little bit by dilating arteries and reducing the heart muscle and the vasculature stiffening up and worsening the heart failure. But it's something that's still being researched to some degree, but with the muscle of the trial, we know it works. 

JOURNALIST: And in terms of being able to access this through a GP, do you think that's going to ease pressure on our structure? 

ASSOCIATE PROFESSOR DE PASCQUALE: Yeah, I think at that moment, it'll be specialists as all new drugs are, but slowly, you know, all cardiologists will become familiar with it because that's how we operate you know, new drugs, the doctor needs to become familiar and then more and more specialists will use it and we'll see it's in guidelines, including Australian guidelines. So we'll see it used more to the benefit of patients.

JOURNALIST: The benefit to patients what can we see you've mentioned before, you know, the struggle to get up and go to the garden, the shower, and then progressively that gets worse. What can we see from patients?

ASSOCIATE PROFESSOR DE PASQUALE: It's that sort of disease that follows a downward trajectory over many years, even decades plus, but then there will be superimposed decompensation episodes. And they are what we count in big clinical trials and of course, surviving. And both those endpoints combined reduced with the trial. So, that's not only good, really, for the patient and their loved ones, but also good for us as society because hospitalisation costs us all a lot of money and a lot of time.

JOURNALIST: So these drugs are providing a better quality of life for those with it?

ASSOCIATE PROFESSOR DE PASQUALE: So people come to hospital because they're suffering and so we've got that part in point and so they clearly feeling better.  

JOURNALIST: Are there any side effects? 

ASSOCIATE PROFESSOR DE PASQUALE: Very little. We were worried about low blood pressure and dizziness with this drug, this drugs got a brother that's used in different conditions, that lowers blood pressure quite a bit, but that didn't. So we were very careful in the trial, and doctors will be careful when they prescribe it. But that didn't really come out to be of significance in 5000 patients, there was a side effect of reducing blood count - a little bit unexpected. And that's what happens with trials, we learn things and that will be looked into but certainly the endpoint - what we were looking for - was better. And that's why it's got the stamp from all these authoritative bodies. 

JOURNALIST: Andrew, would you mind talking us through a little bit of your story? Obviously no stranger to these type of ailments.

ANDREW KERR, PATIENT: I'm 71. Back in 2013, around Christmas time, I started to feel lethargic, a cough. And eventually in January of 2014 I was diagnosed with cardiomyopathy. And was told overnight that I'd have to give up my job, which was self-employed gardener and lawn mowing business. From there, in November 2014, I had a a defibrillator insert, and my refraction rate improved. And I just went along with normal things at home, I didn't have any problems. I was going to the gym once a week with a physiologist. And I've been doing that ever since. And then probably two and a half months ago, I started to get a cough again. And I had an appointment to come in here to cardiovascular to have an echo, which they performed, and my refraction rate had dropped right back down again. So my heart was only just ticking over. So I was put in Flinders Medical Centre. And my cardiologist Carmine, in common with various medications and what have you. One was to get rid of a fluid. And I've also had a pacemaker- the defibrillator was taken out - and I've had a pacemaker put in. And now that's pacing all the time. And from what I was two weeks ago, three weeks ago, I'd be 110 per cent. I found it hard to walk because of being breathless. Now I feel back to how I was sort of six months ago. 

JOURNALIST: Andrew, are you also able to just run us through if it's okay - with your late daughter. 

KERR: We’ve had four children. We had a daughter, two and a half, who passed away, and she was diagnosed with a heart complaint, which they now think was probably cardiomyopathy. But back in those days, she’d have been 37 now, so back then, medical science probably wasn't as forward as it is now. We also had a son who had a genetic problem and he died at four days. Since then, we've had two other daughters and our youngest daughter is now 30, had a heart transplant when she was 14. She was a fit basketballer, played tier one basketball here in Adelaide for a couple of different clubs. And she's now an ICU nurse. And that's basically our family history. And I guess if you if you look back, obviously cardiomyopathy might be genetic - but the doctor might tell you that.

JOURNALIST: When you speak about working and you were outside pretty much with a very physical job mowing lawns and whatnot to then get that news, obviously would have been quite a shock, but then also with the family history as well. How was that for you?  

KERR: It was. I suppose the hardest thing was having to give up work straightaway. And when you've been doing the job for sort of 20 years and having to ring people that you've been working for 20 years to say that you wouldn't be coming back. That was one of the hardest things I think that I had to put up with.  

JOURNALIST: And so I know your daughter, who's 30, who had the heart transplant, does she still require medical treatment?

KERR: She's on various drugs, anti-rejection drugs she has to take daily. But at the moment, she's in fine health. So one can only thank the medical fraternity for prolonging her life. We spent eight months in Melbourne while she was waiting for a heart transplant, and so we had to move our family across there. 

JOURNALIST: What will this this drug now on the on the PBS mean for you and the family?  

KERR: Well, hopefully it'll with the other drugs that I'm taking and, and the pacemaker will lift my refraction rate, and prolong my life. 

JOURNALIST: And given the family history with this as well, in terms of the financial barrier and the sacrifices that might need to be made to pay for this kind of medicine, do you think that will make a big difference?  

KERR: Oh, it certainly will. As I'm a pensioner, I only have to pay the lower amount anyway. But yes, for anyone that, that is now having to pay the full cost, it would be a terrible burden, financial burden. Because you just don't realise how much is your spend, you know, per week, or per fortnight, per month on medication. 

JOURNALIST: And just for someone watching, can you just explain what it is like living with this condition? And I guess, the outlook as well? 

KERR: Well, I suppose. I mean, my wife will probably kill me. But you know, it hasn't stopped me doing a lot of things. And I probably do more than I should have been doing - which are now cut back. And obviously, this has been a big scare. And from now on, and I've got to be a lot more careful what I do. And just try not to do too much physical work. But you know, I can walk. We live down at Bowden, which is flat, we live in an apartment, so there's plenty of walking to be done down there. I go walking every day.  And other than that it hasn't really had a big burden on me, I suppose. At least now I can lie down and sleep. For a week and a half I was set up in a chair, but I couldn’t lie down, that’s before I went to hospital.

JOURNALIST: Andrew, can you take me through how cruel heart disease has been for your family and how drugs like this, you know will give you a better quality of life, or give people a better quality of life with heart disease.  

KERR: The biggest thing was, our eldest daughter was in year 12. And so when Claire was diagnosed with severe heart failure, and we went into the Children's Hospital, and I suppose we were lucky - lucky or unlucky. There was a doctor on secondment from Melbourne, he was in the transplant unit, and he told us within an hour of seeing Claire that she would need a heart transplant. Probably the worst thing was he told us at the end of her bed, so she actually heard what he what he said. But other than that, we had to pack up shop, take our eldest daughter over to Melbourne and we stayed in Ronald McDonald House for eight months and we didn't have any income. So, financially, that was a big burden. And I mean, you do anything for your children. And she was lucky enough to get a heart just before her birthday - the week before her 15th birthday. So that was a bonus.

JOURNALIST: It must have been terrifying going through that.

KERR: It was I mean, we sat there every day, you know, watching, and I suppose we're lucky that she was pretty fit from playing basketball. But she ended up, you know basically a skeleton, she just lost so much weight. And I must admit that food in the hospital wasn't that great. And when you've been there for so long, it's the same. It's on a fortnightly or three weekly rotation. So you end up with the same food or whatever, every two or three weeks. So we used to buy food from outside and bring in. She loved spaghetti bolognese, and that sort of thing. We found a shop close by that that would provide takeaway for us. And the staff were very good - used to find desserts for her and things like that.  

JOURNALIST: Did you ever think you were going to lose her?
 
KERR: That was the first thing we thought, when she was first diagnosed we had Christmas, it was just before Christmas – a week or week and a half before Christmas. And we had Christmas in ICU and I thought she had that many lines coming out of her. It was one of those things every day, you just hope that she'd end up getting a heart, but she did, from a generous donor. 
 
ASSOCIATE PROFESSOR PETER PSALTIS, CARDIOLOGIST AT THE QUEEN ELIZABETH AND ROYAL ADELAIDE HOSPITALS: The Minister's announcement today about access to Repatha, that brings really good news for people in Australia living with heart and vascular disease. And here I'm talking about those people who have had or at high risk of having a heart attack or stroke, or circulatory or blood flow problems to their legs. Heart and vascular disease remains Australia's leading killer. It causes more than a quarter of Australian deaths - if we just focus on heart attacks for a moment, an Australian has a heart attack on average every 12 minutes. So we're talking almost 60,000 Australians a year. And there are more than a million people in Australia living with heart and vascular disease. Now we've known for a long time that one of the key factors that causes heart attacks and strokes is having a high cholesterol level, the higher your cholesterol level in the blood, especially the bad cholesterol, what we call the LDL, the higher a person's risk of having heart attack or stroke. So with people with heart disease, we really need to get that level down as low as possible to prevent those bad things from happening. For the last 30 or so years, we've had very effective tablets, including statins that work really well at lowering a person's cholesterol, they do a good job. The challenge for us is that up to half of our patients with heart and vascular disease do not get their cholesterol low enough with the current treatments we have to prevent further heart attacks and strokes from happening. So this announcement today gives people with heart and vascular disease who can't get their cholesterol down low enough, who have stubborn cholesterol, with our current treatments, greater access to this drug called Repatha.

Repatha is a medicine given by an injection either every two weeks or every four weeks, it's very effective. It lowers the bad cholesterol by up to 60%. And that's on top of good diet. And on top of the tablets we have like statins. And it does that within a matter of days to weeks. Over the last few years in Australia and around the world, we've been able to use Repatha in some patients. And we've seen that it's safe, it's well tolerated. And studies of tens of thousands of people have shown that it clearly lowers heart attack and stroke. And recently, we've seen long term data showing that it prevents people from actually dying of heart disease, which is a major, major benefit. 

So there are three key things that I wanted to tell you about Repatha and this access that people are going to have that I want you to really take home. The first is that this is not going to be for everyone. All right, eligible people for this medication need to have established heart and vascular disease. They need to be on treatments like statins, and they need to have a cholesterol level that is still too high. The second key point is that this does not replace the importance of a healthy diet and lifestyle, those things are still key. And it does not replace the use of the tablets that we're already using. What this does is it allows people to have an extra medication when their cholesterol is still statin. And the third key point is that for the first time, this gives general practitioners the opportunity to prescribe or to start prescribing Repatha in their patients who are eligible in consultation or discussion with specialists. And this is key, because people with heart disease are living in the community. And their usual point of call, and their first contact, of course, is with general practitioners. So it gives me great pleasure to ask Terry Griffin to come up just very quickly. Terry's a very young man, he's 42. He's fit and active, and he's a marathon runner. But out of the blue early this year, Terry developed symptoms of heart disease, and he's going to tell you his story now. 

TERRY GRIFFIN, PATIENT: As he said, my name is Terry Griffin. I'm now 42. I was 41 in January when I started developing heart attack-like symptoms. And only when running – a friend at work actually said, right, well, I'm never running again - but it's quite effectively saved my life. So about six minutes into every run, I start getting a tightness in my chest, and then over a couple of weeks that came along with a pinching pain in my left arm. And then maybe about six weeks in I started thinking I should probably tell my partner what's going on. And then we did a park run with our running friends who, thankfully for us, we have a GP and a cardiac nurse practitioner in our group of friends and I told them what was going on. And they quietly suggested that I get a referral from my GP to see a heart specialist. So a week later, I'd saw the GP, got a referral. A week later, I had a stress echocardiogram, the same day they did angiogram. And then six days later, I had a double bypass. Thankfully, I didn't actually have a heart attack, because I might not be here if I did. Yeah, it's been recovery since. 

JOURNALIST: How important were those early warning signs and the the kick up the bum, so to speak, to go in and seek some sort of advice?

GRIFFIN: Incredibly so, incredibly so, I mean, not having had any family history of heart disease and being as relatively fit and healthy as I was at the time and now, I didn't think that that's what it was. I just thought I had too much of a good time over Christmas and didn't train enough and was just going to keep pushing through. It's just like a stitch really. Yeah, as it turns out, well, I had the stress echo and the angiogram on the 4th of March. And they kept me in the hospital until the surgery the next Thursday. By the Monday, I was just getting out of bed and going to the toilet and back to bed. I was grossly out of breath. A couple of times the nursing staff actually came  into the room thinking something was wrong because the machines I was hooked up to were going into alarm. So it was imminent. Really, if I hadn't listened to the advice of my loved ones, then I wouldn't here. 

JOURNALIST: It was mentioned in the release about the Australians who have been hospitalised have access to this medicine on the PBS. Does that mean if you're not hospitalised, you're ineligible? 

MINISTER BUTLER: Eligibility will be determined by the clinicians and I think they've outlined that, you're talking particularly about Verquvo?

ASSOCIATE PROFESSOR DE PASQUALE: The rules and the guidelines always follow what happened in the trial as they should, because that's what proved that in this trial was patients who had recently been hospitalised - recently means within the last six months, and so that is what the PBS guidelines are, that's what the guidelines say.

MINISTER BUTLER: And I can just add to that so Verquvo is a new listing. So that's the first time this medicine has been listed at all. Repatha for example is an amended listing and so what you find is, as a medicine is on the PBS and we learn more about its benefits and the potential to widen the patient group there can be amendment to the listing, which is, for example, what's happened to Repatha.  

JOURNALIST: And just separately as well, the Medicare rebate for a lifesaving heart health check-up at a GP is due to end next June, will the government permanently extend it?  

MINISTER BUTLER: I've said I'm very supportive of that heart health check. There's currently a review of it because it was a relatively new MBS item. So good practice, good policy means we review it to ensure that it was achieving - that it is achieving - the objectives that were behind its establishment. I've said I'm very supportive of it. But obviously this review is important. We'll talk more about it once we review evidence is in.  

JOURNALIST: Minister what can we expect from the final week of Parliament? Have you heard any more from the Prime Minister about the possibility of sitting on Saturday? 

MINISTER BUTLER: Yes, I think it is clear Parliament will, the House of Representatives is scheduled to sit on the Saturday, I think Minister Burke, who's also Leader of the House will have had some things to say about that, in his interview with the ABC this morning. I'll refer you to that. But we are very committed to getting these amendments to the Workplace Relations Act through this year. We know the Senate has an enormous amount of business on its agenda to get through from Monday to Friday. But the House of Representatives as I understand it, is scheduled to sit on the Saturday so that we can finish the business the Australian people elected us to do.  

JOURNALIST: Would you support a Censure Motion on Scott Morrison over his secretive ministry?  

MINISTER BUTLER: The Prime Minister has already indicated that he intends to make a report on the Bell Inquiry, recommendations to Cabinet tomorrow. So we're scheduled to meet tomorrow morning in Canberra, and I'll wait to the outcome of that discussion is reported by the Prime Minister. 

JOURNALIST: Would you support it? 

MINISTER BUTLER: I'm going to have to participate fully in the discussion within Cabinet, and the Prime Minister will report on that in due course.  

JOURNALIST: Can we please get your reaction on the Victorian election?  

MINISTER BUTLER: This is a terrific victory for Daniel Andrews, his team, all of the volunteers, the candidates who worked so hard over the last several weeks. But the enormous hard work that the Victorian Government has done in partnership with the Victorian community over three really, really tough years. I mean, no one in Australia has done it tougher during this pandemic than the people of Victoria. And Dan Andrews’ strong, focused leadership through the pandemic has been endorsed with this extraordinary victory.  

JOURNALIST: Are you concerned at all with hospital systems and the COVID waves that are expected around Christmas?  

MINISTER BUTLER: We're monitoring this fourth Omicron wave very closely, of course, as all state health authorities are doing. The data that was released on Friday, seven day data, shows across the country, it appears that there is a flattening of this curve, or the curve of this wave that has been underway probably for the last three week. That appears to be the advice of all of the Chief Health Officers across the country, including the Commonwealth Chief Medical Officer. Generally, the modelling had indicated with some differences from state to state that this wave was likely to peak towards the end of November into early December. The case numbers are certainly up – they’re up 10% in the last seven days compared to 47% the seven days before that, 38% those seven days before that.  So you do you see a flattening of that curve. And although they are up, there's still about 80% down from the peak we saw in late July. Hospital numbers though were up last week about 13% - up to about 2200 people in hospitals across the country with COVID. But again, that is down 60% from the peak we saw only a few months ago at the end of July. So we're monitoring it very closely. But the advice appears to be that that this wave is likely to peak and then start dropping away over the course of December. 

JOURNALIST: And last question, what does the government IR bill mean for healthcare workers? 

MINISTER BUTLER: We were particularly elected with a promise to get wages moving again, after 10 years of essentially flat wages, households, particularly lower middle-income households were finding it tougher and tougher to get ahead. And that was particularly so in the care economy, part of the economy that proved just so vital to our community over the last few years, but one which is predominated by female workers who are relatively low paid, and I'm talking about sectors like aged care, disabilities, childcare, but others as well.  And for really 30 years of an enterprise bargaining system, those hundreds of thousands of predominantly female workers haven't seen their wages move in the way that so many other sectors of the economy have done. And this Bill, particularly the low paid bargaining stream that allows employers to join together in a sector like aged care, or childcare. You've seen very strong support in the childcare sector this legislation – it allows them to ensure that their staff who performed such important work for our community are able to see their wages keep pace with the rest of the Australian community. 
 
Thank you very much everyone.  

 

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