Tony 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.

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