House debates

Tuesday, 30 November 2021


Health, Aged Care and Sport Committee; Report

5:11 pm

Photo of Katie AllenKatie Allen (Higgins, Liberal Party) Share this | | Hansard source

I rise today in recognition that better health for all Australians is key in our development and success as a country. I would like to thank all the members of the House of Representatives Standing Committee on Health, Aged Care and Sport for their report, entitled The new frontier: Delivering better health for all Australians. I extend a special thanks to the member for North Sydney for his work in chairing this inquiry and to the deputy chair—Mr Deputy Speaker, the member for Macarthur—who, as a paediatrician, along with me, is a former brother-in-arms on the front line of health care. Alongside the secretariat supporting the committee, the member for North Sydney and the member for Macarthur have overseen the development of 31 recommendations to ensure the best opportunity for health for everyone in Australia. I am delighted that I was asked to be a supplementary member of the committee. It has been a very bipartisan committee. It has been a great experience for me. It is truly something to be recognised in this parliament as something that is actually progressing outcomes for all Australians. So thank you, Mr Deputy Speaker, for your participation, and thank you for allowing me to participate as well.

We know—indeed, most Australians know—that Australia enjoys one of the best health systems of any country. Medicare sits at the foundation of our health system and, combined with private health insurance and private health networks, forms a strong foundational framework of health care that delivers for the benefit of all Australians as part of a universal healthcare system. Indeed, all levels of government are involved in the running of our system, and it is clear that it is a successful system. In fact, as an outcome, Australia ranks eighth in the world for life expectancy. By and large, metrics of health rank Australia in the top 10 worldwide; in fact, some metrics have us at number two. But, of course, there is always more that we can do. We can never be satisfied; we must always strive for better. It is the least we can do for all Australians.

That is why I am very delighted with this report, which has made numerous recommendations towards ensuring that the system works better for all Australians. Each of these 31 recommendations were considered and developed in light of current challenges in the health sector, with tangible benefits for all coming from the adoption of these recommendations. Some recommendations I would like to highlight include the following.

The first is recommendation 1: the committee calls for the establishment of a centre for precision medicine and rare diseases. As you know, I was a professor at the Murdoch Children's Research Institute, which began life as the Murdoch Birth Defects Institute. It is a pre-eminent medical research institute that specialises in both genetics and stem cell research. So it is with great pleasure that I talk about this recommendation, which, if implemented by the minister, will increase the ability of the Department of Health to provide Australians with access to breakthrough drugs and novel medical technologies, particularly for children with rare diseases, because, as you and I know as paediatricians, there is often very little hope for these children. We are currently in the House debating 'Maeve's law', a very important law reform which may offer new hope to people who have this very rare genetic condition through the mitochondria, so it is great to see there would potentially be a centre to focus on new technologies, precision medicine and rare diseases. On top of this, the proposed centre would provide a comprehensive horizon-scanning unit for the aforementioned drugs and technology to support patients. This centre would be well placed to advise the Department of Health as well as the Medical Research Advisory Board.

Recommendation 3 is another recommendation that I'm particularly proud of—that is, the creation of an office of clinical evaluation within the Department of Health. This office would evaluate both pharmacological and non-pharmacological interventions as well as establish a 'living evidence' function to ensure that health assessments are informed by the most up-to-date and accurate data. We all know, having been through COVID, how important knowing what the most recent tests, diagnostic as well as therapeutic, are for the care of patients. The opportunity for research to be in a 'living evidence' function would be useful to Australia, as would having external horizon scanning so that we can connect with countries overseas.

As an aside, Deputy Speaker Freelander, you and I know that medical types in Australia keep up with what's happening internationally through international medical conferences. Australians are great travellers, but health professionals in Australia, particularly doctors and medical researchers, are fantastic travellers, and they have served us well as a sort of subterranean global health diplomacy in this country. You and I both know, being members of the National COVID-19 Health and Research Advisory Committee, that there is a lot of data gathering across jurisdictions by the health professionals in this country that feeds into this NHMRC supported committee and provides evidence for the government and for policy within this country. But it would be great to have an office of clinical evaluation that does this on a continual basis, not just during periods when we're facing health pandemic, such as we are now. By gathering this information and then sharing it with state and territory governments, the proposed office would ensure continuity of the best quality and most effective treatments.

In my role as co-chair of the newly formed Parliamentary Friends of Medical Technology, I'm particularly pleased by a number of recommendations pertaining to the emergence of new medical technology that will help ensure Australian patients get fast and efficient access to the best available devices and digital products as and when they emerge. Many people watching this will absolutely understand that one medtech that has been of great benefit to all Australians is telehealth, a form of digital interaction with clinicians, which means you don't need to travel to congested inner cities or travel long distances in rural and remote parts of Australia; you can get access to scripts or to review appointments at the drop of a phone call or a videoconference. We want to make sure we can bring these new technologies, which Australia has been at the forefront of developing, to market more quickly and through the regulatory process more efficiently.

To this effect, the committee's recommendation 19 suggests reforms to one part of the medtech sector, the Prostheses List, by firstly addressing the lack of coverage for non-implantable devices under the current arrangements and, secondly, ensuring that there is improved coordination between the Medical Services Advisory Committee and the Prostheses List Advisory Committee to provide faster access for patients. Further, the New Frontier report recommended that the independent health technology assessment review reassess relevant aspects of the health technology assessment process to ensure there are future pathways for treatments and therapies that do not fit neatly into the current system, such as for rare cancers, antimicrobials, orphan drugs and precision medicines.

As a paediatrician, I would emphasise that it's imperative that appropriate clear pathways are considered for inclusion for paediatric medicines and technologies. The committee was of the clear view that precision medicine approval pathways will require a different application assessment process than current approaches designed for treatments for common conditions, with their large datasets and comparative evaluations. Finally with regard to medtech, the committee recommends that the Department of Health introduce an equivalent to the managed access programs for medical devices. The report recommended that the details of this scheme, including the eligibility criteria and duration, should be formulated in consultation with patient groups, clinicians and industry.

I know that recommendation 21 is of particular interest to you, Deputy Speaker, as it is to me. The committee calls for the standardisation of newborn screening across Australia—and about time too, I would say. On top of this, the committee recommended an expansion of the newborn screening program in light of the increased understanding of genomic testing. We know, again from the Murdoch Children's Research Institute but also the Garvan Institute of Medical Research, that genomic research is pre-eminent here in Australia, and we should take advantage of that not just for our patients and for Australians but also for the business opportunities that this provides to Australian businesses. Preventative health care is immensely important to me, considering my background in paediatrics, and accurately screening our youngest Australians is crucial to make sure that we can detect those early conditions as early as possible, to give them the best possible chance for a good start to life.

The committee's recommendation for increased patient voice is something I see as paramount for moving forward. The committee implores the Department of Health to bring patient voice upfront into the health technology assessment system. This includes representation of peak patient bodies in the system, refreshing every three to five years. Particularly importantly, we did as a committee recognise that there was a dearth of Aboriginal and Torres Strait Islander people as voices with regard to, particularly, medicines that may have specialty in their situation. I'm very pleased that we have identified this as a gap in our healthcare system. We know that they experience everything, and we need to make sure that patient voice is pivotal to improving our healthcare services in general.

Australia's health system is oft lauded as one of the best in the world, but complacency and satisfaction will not improve the lives of Australians in the health system. We must continue to deliver better health for all Australians. This indeed is a time for the new frontier, and COVID has focused that more now than ever. Looking at this part of health technology delivery in Australia will help give every Australian the opportunity for better health. I commend this report to the House.

Photo of Mike FreelanderMike Freelander (Macarthur, Australian Labor Party) Share this | | Hansard source

I thank the member for Higgins for her kind words and for her efforts on the committee.

5:21 pm

Photo of Emma McBrideEmma McBride (Dobell, Australian Labor Party, Shadow Assistant Minister for Mental Health) Share this | | Hansard source

Mr Deputy Speaker Freelander, I'd like to start by acknowledging the member for North Sydney, the Chair, and you, the Deputy Chair, of the Standing Committee on Health, Aged Care and Sport for your work throughout this inquiry into the approval processes for new drugs and novel medical technologies in Australia. In fact, if it wasn't for you, I wouldn't have been invited to join the committee as a supplementary member, so, personally, I thank you. To the committee members, including the member for Makin and the member for Moncrieff, thank you for making me and the member for Higgins welcome as supplementary members for the inquiry.

As others have said, there is no doubt Australia has one of the best healthcare systems in the world, underpinned by Medicare and the Pharmaceutical Benefits Scheme and designed to provide quality, safe and affordable health care to all Australians. But we have much more to do. As COVID-19 has shown, the further you live outside of a big city, the more vulnerable you are and the worse your quality of life is likely to be, especially if you're living with chronic disease. Acute shortages of healthcare workers and higher out-of-pocket costs are leading to longer waiting times and poorer health outcomes for the seven million Australians living in regional and remote Australia.

In the time I have today to speak on the report, I am going to focus on the areas of affordability and access, particularly around medicines, as a pharmacist of over 20 years. I know that community pharmacies play a vital role in our healthcare system. There are almost 6,000 community pharmacies across Australia, and in communities outside big cities pharmacies are often the only place where locals can seek health care, where they can walk in without an appointment and get quality up-to-date information and advice. In fact, in some 70 towns in Australia that are without GPs or other allied health support, pharmacists and pharmacies are the only health care available.

Mr Deputy Speaker, as you know, pharmacists are some of the most trusted healthcare professionals in the world, but they are facing serious challenges when it comes to caring for and supporting their communities and their patients. We often talk about patient centred care. I think there is a big gap between the rhetoric and the reality, particularly for the most vulnerable people, and especially those living outside of big cities. The last two years have been particularly tough, with the COVID-19 pandemic causing global supply chain disruptions and local outages in many communities. I remember a parent talking to me about not being able to get infant Panadol for their child and being very concerned about what they might be able to do to make sure that their child was safe and well. I've had people talk to me about not being able to access Ventolin inhalers and asking, 'If I see my GP and I get a prescription, am I more likely to be able to get a Ventolin inhaler than if I go in and ask over the counter?' These are essential medicines, vital for Australians, and what COVID-19 exposed was, in a well-designed healthcare system, the vulnerabilities, particularly in global supply chains, leading to local outages. This has made it harder for Australians, as I've mentioned, particularly for those seven million Australians living outside of big cities, in regional and remote communities across Australia, to access life-saving medicines that they both need and deserve. This is being seen in hospital settings. There were already problems before COVID-19, but those vulnerabilities have been further exposed. There have been outages in common, routine, day-to-day medicines that have put patients at risk.

A key recommendation of this report has been around the supply of medicines on the Pharmaceutical Benefits Scheme. We must, all of us, make sure that medicines, particularly new medicines, are always universally affordable for all Australians wherever they live and whatever they earn. It is so important, and I want to reference some of the remarks the Pharmacy Guild of Australia made as part of the inquiry that led to this report. The Pharmacy Guild of Australia made a submission where they spoke about the cost of new medicines, particularly to the community. They said:

New medicines are likely to be highly specialised and have the potential to be significantly more expensive than anything currently available on the market. For small businesses like community pharmacies, this presents a serious cash flow problem and business risk

It is really important that we make sure that community pharmacies, the almost 6,000 community pharmacies across Australia, are able to provide medicines affordably to their communities, and especially to the most vulnerable.

According to the Australian Institute of Health and Welfare's latest report, just over one in 20 Australian adults, or 6.6 per cent of the population, delayed or avoided filling a prescription because of the cost. I've heard from community pharmacists who have had patients come into their pharmacy with a bundle of prescriptions and a trolley of groceries, almost apologetic that they have buy the essential groceries that they need before they can decide which prescription to get filled. I've had parents say to me, 'Can I get one of the antibiotics filled and share it between the two children?' Or, 'Can I take this medicine every second day to stretch that one-month prescription to last two months?' This shouldn't happen in a wealthy country like Australia. Australians shouldn't be forced into a position where they are having to decide which medicines they can skip or which script they can avoid or delay filling. That shouldn't happen in Australia because that is a risk to the individual. It's also a risk to our healthcare system and to our economy. It's bad for patients and it's bad for the economy. In the Hunter, New England and Central Coast region of New South Wales, which is the community that I represent, the number of people avoiding or delaying filling scripts is higher, as it is outside big cities—6.8 per cent. The high cost of medicine is, as I mentioned, forcing people to delay or avoid seeking treatment and care. It is bad for their health, it is bad for our healthcare system and it is bad for the economy.

Pharmacists are also calling for adequate training prior to any new medicine or novel medical technology coming onto the market so that they can provide the most up-to-date and effective advice to their patients. This is vital. As I said before, pharmacists are some of the most trusted and relied upon healthcare professionals in our communities, and they're well-placed to support patients who need highly specialised medicines, and new and evolving therapies. But they need to be properly supported, with timely access to the most up-to-date and evidence-based information to protect the health and best interests of their patients.

There is also a need to address renumeration. I have spoken about this before. Pharmacists were asked early to put in expressions of interest to be part of the COVID-19 pandemic response. Because of the way that the vaccines were rolled out, many pharmacists and pharmacies weren't able to participate in the vaccine rollout until June. That was the earliest that pharmacists were able to participate. Now we're seeing that Pfizer has been recognised as a universal booster. Pharmacists are being paid $16 per jab. There are 27 different requirements they have to comply with in order to be able to provide a jab. I have heard that some pharmacists reluctantly feel they will not be able to continue to participate in the vaccine rollout. As state and territory governments stand down mass vaccination centres and vaccine hubs and they're relying more and more on the network of GPs and pharmacies across Australia, I don't know how they can justify the poor remuneration for pharmacies. It's a big concern to me. The current arrangements don't reflect the costs associated with ordering, handling and dispensing these vaccines. This needs to be properly addressed.

In the time I have left, I would like to put my full support behind pharmacists and other allied healthcare workers being properly supported in the work that they do. It's essential that all healthcare professionals are able to work to the full scope of their practice, to make sure that all Australians can get proper health care—especially those Australians living outside of major cities. As the Pharmacy Guild have said in their submission:

Pharmacies often are presented with very little incentive to stock or be involved in supplying high cost specialised medicines.

This must change so that all Australians can access the care they need. As the Pharmaceutical Society of Australia said in their submission:

Australia has a strong track record in the regulation of therapeutic goods underpinned by an evidence-based framework as well as timely and cost-effective considerations around access to and subsidisation of medicines and therapies for patients.

As I said at the beginning, Australia has one of the most highly regarded healthcare systems in the world, underpinned by Medicare and the Pharmaceutical Benefits Scheme. This has been a bipartisan inquiry, but it can't go without mentioning that those two schemes were Labor initiatives. I know the first time I met you, Deputy Speaker Freelander—and this is why you're in this place—you said to me, 'I will not end my medical career as I started it: without Medicare.' I think it is so important to all Australians that we have universal health care: health care for everyone, wherever they are born, wherever they live or grow old. I think that's something that this report has underscored: the need to make sure that all Australians have access to quality, affordable health care.

I commend the report to the House. I would like to again thank you, Deputy Speaker, for your work; and that of the chair, the member for North Sydney; the member for Moncrieff; the member for Makin; and the member for Oxley who couldn't be here today. Thank you.

Photo of Mike FreelanderMike Freelander (Macarthur, Australian Labor Party) Share this | | Hansard source

I thank the member for Dobell for her efforts on the committee and for her kind words.

5:31 pm

Photo of Angie BellAngie Bell (Moncrieff, Liberal National Party) Share this | | Hansard source

I agree with the member for Dobell that it is important that all Australians have access to affordable health care—and Medicare's not going anywhere. I'm very pleased to be able to stand in the Federation Chamber in this place and speak on this report called The New Frontier: Delivering Better Health for All Australians, which is why many of us are here. We want to be able to see that, ongoing for Australians, there is affordable and accessible health care for those who can't afford it. It's worked very well having half-private, half-public—just like schooling, half-public, half-private works very well; of course, we've heard the great Liberal leader John Howard iterate that many times.

First, I want to acknowledge the chair, the member for North Sydney and the deputy chair; Deputy Speaker Freelander, member for Macarthur; my colleagues, the member for Higgins, member for Reid, member for Dobell of course, and for Oxley and Makin for their inputs into this very special and important inquiry.

The report looks at opportunities to deliver better health care for Australians through our regulatory and health technology assessment process for both medicines and technologies. As outlined in the chair's forward and at the heart of this inquiry are the needs of patients, Australians who are born with or acquire conditions, many of which have so far eluded highly effective treatments. That's why this inquiry was undertaken: for the future of those Australians who face those health difficulties. It is very challenging. We all have health challenges in our lifetimes; very few of us actually get through our lives without some kind of health challenge. So it was very important to me personally to be part of this inquiry with my colleagues who did such a good job. It was a bipartisan effort, Deputy Speaker, as you're very aware. Everything in this report is about those Australians with rare medical conditions, especially those Australians who may require novel drug and treatment technologies, and those who indeed sometimes in their darkest hour need hope for moving forward.

Australia has one of the best health systems in the world, as we've heard members from both sides of this chamber acknowledge. Our success in protecting Australians during a global pandemic is the latest evidence of both the strength of our healthcare system, and the quality and dedication of all of those who work in the health sector. Can I take the opportunity to thank you if you work in the healthcare sector for the work that you've done, particularly over the last 21 or 22 months and moving forward into next year. Let's compare Australia's record, sadly, of, 2,000 deaths during this pandemic. Of course, each one is a tragedy, each one belongs to a family—perhaps a father, an uncle, a son or a daughter. But, when we compare our record to other countries around the world—for example the United States, with 750,000 lives lost—each one, again is tragic and has a ripple effect on all of those family members. Our country has indeed done very well.

And of course innovation is happening at a very fast pace. Governments have a duty to ensure that Australians continue to have access quickly to medicines and medical technology and that our health systems facilitate that outcome rather than hinder it. Australians can also benefit from being at the forefront of innovation through clinical trials and having a strong domestic research development and manufacturing capacity. Some of these comments were made by the chair of this particular committee, the member for North Sydney.

In 2019 more than 95,000 Australians participated in clinical trials, which saw the commencement of approximately 1,880 trials, which employed 8,000 Australians. I speak of this because it is particularly relevant in my electorate of Moncrieff. The Gold Coast clinical trial sector is an emerging, rapidly growing sector with well-established demand drivers, including ageing and diverse and rapid population growth. The Gold Coast is actually the largest regional city in the country for the delivery of clinical trials, experiencing 32 per cent growth and employing approximately 44,000 people. That's significant. It is an emerging sector on the Gold Coast.

One example of emerging technology in Moncrieff is that which is being used by Dr Hal Rice. I've spoken about him before in this chamber, but he deserves me taking a few moments to talk about his achievements in terms of surgery on brain aneurysms. What Dr Rice does is robotically perform surgery on brain aneurysms. He also has a 3D printer, with which he prints out the actual aneurysm that a person has—the stroke or the blood clot in the brain—and his medical students are able to rehearse on that 3D model of the aneurysm. This, indeed, saves lives. Virtually every time I invite Dr Rice to anything, he has to scuttle off to save another life. I thank him for the work that he does out of the ADaPT centre at Griffith University, which is my alma mater.

I'm very proud of the growing clinical trial, medtech and biotech sectors at the health and knowledge precinct at Griffith University in Southport. Recommendation 17 of the report actually recommends:

… that the Australian Government establish a scheme that supports the domestic medical technology sector, similar to the Food and Drug Administration's Breakthrough Devices Program in the United States.

I support that because it will support the growing sector on the Gold Coast.

I can't talk to all the recommendations, because time does fly in the chamber, but I will talk quickly about recommendation No. 1, which is:

… the Australian Government establish a Centre for Precision Medicine and Rare Diseases within the Department of Health.

This would enable a dedicated centre for rare diseases and a way forward for those who need access to drugs and technology to treat and perhaps cure their conditions. The committee also recommended that the Department of Health's capacity should be enhanced to provide Australians with timely access to new drugs and novel medical technologies, including for rare diseases, and that health technology assessment, HTA, processes and the government's research agenda should align with this outcome.

This was also part of recommendation 1:

The Centre should provide advice to the Department of Health and the Australian Medical Research Advisory Board on research priorities—

Again, a fantastic recommendation—

The Centre should provide education and training information including support for patients and a comprehensive horizon scanning unit for new medicines and novel medical technologies.

The committee has further recommended:

The Centre should provide advice to governments on the establishment of a dedicated regulatory Health Technology Assessment pathway for cell and gene technologies, in consultation with state and territory governments, industry, patients and other relevant stakeholders. The Centre should regularly provide advice to government on the effectiveness of those pathways and areas for further reform.

This particular report had 31 recommendations. I encourage those at home to go to the Standing Committee on Health, Aged Care and Sport's webpage, on the website, download the report and have a good read of the work that the committee has undertaken. I thank committee members for the bipartisan way in which we approached this, which is for the future health of the Australian population. We heard from many patient-advocacy groups around the country. To those Australians who are battling a rare disease or are unwell at this time: our thoughts are with you. We're working for you, the Australian people, to assist in delivering Australians health care for the future.

Photo of Mike FreelanderMike Freelander (Macarthur, Australian Labor Party) Share this | | Hansard source

I thank the member for Moncrieff for her excellent work on the committee.

5:39 pm

Photo of Joanne RyanJoanne Ryan (Lalor, Australian Labor Party) Share this | | Hansard source

Deputy Speaker Freelander, I firstly want to congratulate you as the deputy chair; the member for Sydney, of course; and all the members we've heard from today who are on the committee. I'll be brief. My contribution today is an acknowledgement of someone who was not on the committee but whom the committee heard from. I want to draw the attention of the House to the story of one of my constituents, who I've spoken about prior to this report in this House, and I want to congratulate the committee on the bipartisan report The new frontier: delivering better health for all Australians.

In the middle of this year, I was contacted by the amazing Sue Tantaro. Sue wanted to contact me on behalf of the Save Our Sons campaign to provide a local, anecdotal example—her family's story—of muscular dystrophy. Sue Tantaro has three grandsons, Anthony, Jacob and Lucas, who have duchenne muscular dystrophy.

A few days prior to the meeting, Sue rang to tell me the deeply sad, tragic news that her beautiful grandson Lucas had unexpectedly passed away. This determined grandmother, with indescribable grief, didn't cancel the meeting, because it was too important for her to have the opportunity to speak for the boys in her family—and boys like her grandchildren all over the country—to her local MP. She understands that we in this place need to understand their needs and their hopes.

She used her grief as inspiration to pursue clinical trials on gene therapy. I promised Sue that I would assist her in any way I could, to help her make life a little easier for Anthony and Jacob and boys like them across the nation. That's why I am speaking today on this report.

Sue also met the member for Macarthur, who I also want to thank for his dedication generally and his work in this place on a report like this. While this report speaks to a range of ways to modernise how we treat illnesses and disease, I really want to speak on Sue's behalf today.

As the member for Macarthur pointed out in the tabling of this report, one of the most important things that have come out of the report is the importance of patient centred care; a cooperative and collaborative approach to health care; and, as we heard the member for Higgins reference this afternoon, the prioritising of patient voice in our health space and in our decision-making.

The report discusses evolving genetic treatments for fatal disorders such as duchenne muscular dystrophy—the very treatment which Sue is fighting so hard for. I want to echo the member for Macarthur's words about how wonderful this treatment could be as a way forward to curing the illness. The report really does provide a pathway for how we in this place develop our health policies and approach treatments in a modernised way, and I welcome the report's call for a centre for rare diseases.

Circumstances, hardship and a desire to act create heroes of ordinary people, and that's what Sue is. She is such a hero. I want to congratulate the committee but also thank people around the nation like Sue, whose voices shape the way we act in this place on such important issues.

I would finish by saying that it is an incredibly strange thing to do to sit with someone like Sue and hear their story. In the moment, with that person, you know that you want to do everything you can to help them. But it's sad that, at the moment, in our health system or when we're making decisions, we're relying on those voices to come to us rather than having a system where that kind of advocacy is not required. However, I don't say any of that to limit the power of the advocacy from Sue and from grandmothers and grandfathers and mums and dads and patients all around the country.

I want to again congratulate the committee and again reiterate to Sue, through the chair, that she will always be front of mind when it comes to how I approach these issues. I hope she had the same impact on members of the committee.

5:44 pm

Photo of Tony ZappiaTony Zappia (Makin, Australian Labor Party) Share this | | Hansard source

I thank the member for Lalor for her contribution to this debate. It very much reminds me of so much of what we heard in the course of the inquiry. I'll come back to that in just a moment. I also begin by acknowledging and thanking both the chair and deputy chair who I believe showed tremendous leadership in steering this inquiry and, ultimately, putting together the recommendations that are now before us. Although they number 31, in reality there are probably over 100 sub recommendations that arose from the inquiry, all of which go to changes that I believe will ultimately make our health system here in Australia not only better but, indeed, one of the best in the world.

I also thank all of those who assisted and participated in this inquiry—and I am referring to the health department officials, industry sector, researchers, health professionals from both hospitals and universities, and the patient voices. This is where I come back to the comments by the member for Lalor about the patients and families who highlighted to the committee their everyday struggles and frustrations with the health and medical system that they interact with on a daily basis. The committee heard their stories and about the importance of both this inquiry and the urgency of adopting the recommendations. We heard their heartfelt pleas as just recounted by the member for Lalor when she recounted Sue's story about how the system could and should be changed to try and support those families who each and every day struggle with illnesses and diseases, particularly when it concerns younger members in families. I believe that a country like Australia could do more to help than we currently do. I think it was those impassioned pleas that have shaped and guided the committee in coming to the conclusions and recommendations that it did.

Medical science is advancing at a rapid pace, and I think that that is well accepted, just as all science seems to be moving quickly. Personalised and precision medicine, underpinned by genomic testing, is changing for better medical treatment in Australia and around the world. But our regulatory system—and I'm referring to organisations such as the TGA, ATAGI, MSAC, PBAC, Medical Benefits Schedule and so on—as well as it has served us for many, many years, also needs to change at the same pace. It needs to keep pace with the rate of change in medical science, because if it doesn't then we start falling behind. That is, in fact, what this inquiry revealed: whereas medical advances are moving at such a rapid pace, it appears that it takes too long for some of the new technology or medicines to become available to the broader community.

In looking at those delays, the reality is that each day of delay adds considerably to the suffering and cost and sometimes even the shortening of life for those people who would benefit from new technology that is being worked on. I accept—and I would be the first to say—that we should not rush medicines and medical equipment through so quickly that it creates a risk in any way to patients. However, the reality is that today we are developing new medical technology at a rapid pace and it is developed in a way that can be assessed much more quickly than it has been.

In the course of the inquiry we heard time and time again from applicants, the industry sector and medical researchers about those lengthy delays, which sometimes run into years and years. Years of delay, undoubtedly, make a world of difference to the quality of life of the people who will ultimately benefit from those particular medical products coming to market. From all of the different submissions we received, with respect to delays, in the end the product that was being delayed got to market. In the end it was proven to meet all of our standards and proven to be something that should have, and could have, been made available a lot earlier. Had it been made available, those people, who relied on it and who were going to benefit from, would have been able to do so much earlier. As I said, at times we're talking about a person's life, where the delay in having the medicine could have made a difference to whether the person lived or not and certainly would have made a world of difference as to whether the person lived a better life because they could afford to pay for all of the medical services that they required. This is another issue, because one of the things that was made very clear from the inquiry is that we don't seem to properly value new medical technology.

We don't have health economists in this country that are able to give a holistic value of a particular product. Sometimes we simply look at the bottom line, but we don't look at all the other costs that would be saved if that product was made available earlier and at a lower price. Things like that need to be factored in to the medical services of this country. One of the things that particularly concerned me was that we often—in fact, too often—do not support medicines and new technologies that are being researched for rare conditions or where we have a smaller research firm looking at something. If it's a rare condition obviously the market for the product is not going to be large and the required investment sometimes simply doesn't justify the cost of research, not because the product or technology won't work but because the money and effort for the research won't be returned to the researchers even if the product is approved. Given the delays in and the costs of applications, many a time the researchers simply don't give the product the priority it needs. It's the same for small research companies that quite often have a great idea and do some terrific research, but the cost to them of taking their product through the system and to market are prohibitive. Again, in those cases the real losers are the people that would have benefited from having the product available because they're struggling day after day with the health condition that that research would have targeted.

I think we can do better with respect to those smaller research companies and those suffering from rare conditions, and that is one of the things that we ought to be focusing on. Obviously, listening to the patient groups also impacted on the committee's final assessment of what we could and should be doing. Patient groups are not given a strong enough voice in the approvals system that we currently have, and I believe that they need to be. In fact, even the approvals system needs to adapt to the point where, when applications are being assessed, the professionals that are making those assessment are in tune with the latest technology. If that means bringing on specialists in different parts of the approvals process then so be it, because we do have some very good professionals in this country who are experts in their field. We should be drawing on their expertise and their advice when a product relating to their field is being brought to market.

Another thing that concerns me—and I'm pleased that the recommendations go to this as well—is the very fee structure that we have in place. One of the concerns that was raised by so many is that, if an applicant doesn't get approved in the first round, the reapplication fees can be exorbitant. There were applicants who simply didn't proceed on that basis. We need to have a sliding scale of fees where, once an application has been dealt with, the subsequent applications, given the work that's already gone in to the first assessment, could be a lot lower, as they should be. We should also have a system in place—and the recommendations also go to this—whereby applicants who simply don't have the money are able to repay the money once they start making a profit from the product, perhaps like our university HECS fees system. I'll finish on this: I think the recommendations are comprehensive and I hope that future governments take this report seriously, because a lot of good work went into it. I hope the report doesn't simply sit on shelves collecting dust, because if it does people in Australia will continue to suffer unnecessarily because medical products that could have been brought to market early are simply not being brought to market.

Photo of Mark CoultonMark Coulton (Parkes, Deputy-Speaker) Share this | | Hansard source

The debate is adjourned and the resumption of the debate will be made an order of the day for the next sitting.