Bert Van Manen (Forde, Liberal Party) Share this | Link to this | Hansard source

I move:

That this House:

(1) notes that every 31 minutes someone in Australia is diagnosed with blood cancer, many of whom will require a lifesaving blood stem cell transplant, with:

(a) a greater success seen when utilising transplants from the bone marrow of younger donors, particularly men aged 18 to 35 years;

(b) patients more likely to find a donor match with those who share a similar ethnic background;

(c) 30 per cent of patients finding a match within their family, and 70 per cent needing to find an unrelated donor through the Australian Donor Registry; and

(d) a shortage of donors, so that 80 per cent of Australian patients will require a donation from an overseas donor;

(2) acknowledges that:

(a) blood donations are currently the main avenue for individuals to join the blood stem cell donor registry in Australia, while cheek swab testing, primarily used overseas, makes the process quicker, easier, and far less intrusive;

(b) dependency on foreign donations has halved in nations that utilise cheek swab testing, whereas Australia's dependency has increased;

(c) cheek swab testing increases the rate of domestic donations, saving countless lives in the process; and

(d) the Australian Bone Marrow Donor Registry's program, Strength to Give, demonstrated that cheek swab testing was a viable, cost-effective method of increasing Australia's donor pool; and

(3) calls on the Government to work with organisations, such as the Australian Bone Marrow Donor Registry, to remove the legislative and regulatory impediments that are currently preventing a nationwide rollout of cheek swab-based donor enrolment and to deliver awareness campaigns to assist in increasing the rate of blood stem cell donations, particularly from Australian men aged 18 to 35 years.

Deputy Speaker Freelander, as you would well know with your medical background, we are at a critical point when it comes to finding long-term solutions for Australians requiring life-saving stem cell transplants. Sadly, every 31 minutes, someone in Australia is diagnosed with a form of blood cancer. Blood cancers are usually discovered under one of three main types: leukaemia, myeloma and lymphoma, affecting blood, bone marrow and the lymphatic system.

In order to properly treat these conditions and a broad range of other blood disorders, a bone marrow transplant may be required. In essence, these blood disorders prevent the growth of healthy blood cells. Bone marrow, the soft centre of bones, where blood cells are produced, also contains stem cells. When compatible stem cells are donated, they are transplanted into the patient by infusing them into the bloodstream. A successful transplant will see the stem cells from the marrow migrate to the cavities of the larger bones and begin to produce normal blood cells for the patient.

On a global scale, Australia is a leader when it comes to the number of blood stem cell transplants performed in this country every year. Unfortunately, we currently face a significant shortage of donors within Australia. As such, we rely heavily on donations from overseas to meet this demand. Let me put this in perspective. The best form of donation is from a compatible close relative, as there are 10 unique characteristics within the stem cells that are looked at when determining a match. About 30 per cent of Australians are usually able to have a successful transplant in this manner. 70 per cent of Australians need to find an unrelated donor, and 80 per cent of these patients have their transplant are sourced from overseas. This figure is far too high.

We know that younger donors result in better outcomes for patients—in particular for those sharing similar ethnic backgrounds. Sadly, many Australians may either be unaware of or be discouraged from the processes of signing up to the donation registry, which could require a blood test. Males aged 18-35 are of particular concern, making up only four per cent of donors. This cohort is a particular focus for the Australian Bone Marrow Donor Registry in their Strength to Give campaign. But, with current testing methods, their options are limited. That is why cheek-swab testing can be such a viable alternative. It is a proven model in many countries across the globe, being used as the predominant form of testing. It is quick and easy for many who would be otherwise discouraged by the drawn-out process in taking a blood test and can be done as simply as taking a swab at home and mailing off the sample. Cheek-swab tests have the potential to add many more Australians to the registry, in the process saving countless lives in this country, at a relatively low cost to our health budget.

I would like to point out that the impediments are not even legislative or regulatory, as the motion has outlined, but bureaucratic and contractual. Red tape is the No. 1 issue facing the ABMDR CEO Lisa Smith and her team, and not the funding. The money is there and ready to go. Unfortunately, jurisdictional issues across state and federal governments impede the transition to cheek-swab testing in this country. We have not been able to keep up with the advances made by other nations when it comes to the technology required to roll out cheek-swab testing. This progression has been stifled by bureaucracy, with no one body responsible for determining the method of testing, and instead rules and regulations overlap at various levels of government.

ABMDR is seeking support to ramp up the registry recruitment campaigns through methods such as sending out cheek-swab test kits by post. They are currently seeking to sign up 125,000 Australian donors aged 18 to 35 in order to meet the domestic demand. I note the member for Kennedy also has a keen interest in increasing donor numbers. He and I have both had separate conversations with the health minister, but there is more work to be done. It's time for our technology to be brought up to international standards so this life-saving treatment can be had for so many people.

Ross Vasta (Bonner, Liberal Party) Share this | Link to this | Hansard source

I thank the honourable member for Forde. Is the motion seconded?

Zoe McKenzie (Flinders, Liberal Party) Share this | Link to this | Hansard source

I second the motion and reserve my right to speak.

Dan Repacholi (Hunter, Australian Labor Party) Share this | Link to this | Hansard source

I () (): I rise today to speak on this very important topic of bone marrow donation. Cancer is one of the most horrible things that any individual and their family will ever have to go through. There is not a family in this country who have not in some way been impacted by this horrible disease. Bone marrow is a vital tool to help in the fight against cancer. That's why donations of bone marrow are so important. Bone marrow donations provide the stem cells required for stem cell transplants. This underpins cutting-edge treatments for people fighting leukaemia and a range of other blood cancers, which are challenges being faced by many Australians. But Australia has not moved fast enough to enable more effective matching of bone marrow donors with patients who need them. At the end of last year the national registry had 131,806 donors of bone marrow. But this is too small. There are simply not enough people in this registry to meet the demand.

To make matters worse, our bone marrow donation system is also too slow. It has not kept up with international standards, including on things like cheek swabs and age limits of donors. Cheek swabs are used across the world, and they are an effective and very economical way of bringing additional donors to the registry. These checks will help give people a better chance of life. Instead of using this effective, cheap and up-to-date technology, a person who wishes to join the registry is required to have a blood test. It baffles me that cheek swabs are a system that has not yet been introduced into Australia.

It's clear why Australia has moved so slowly over the past decade, particularly compared to some other countries, but one thing is clear: we have fallen behind the rest of the world. It is people like those in my electorate, in the Hunter, who are paying the price, with it being more difficult for people in rural and remote Australia to get to a collection centre.

No single government, between the Commonwealth and the states and territories, has sole responsibility or sole authority to make sure Australia keeps up with the rest of the world and makes the most of the newest advances in technology. This is an issue, and it means that patients in Australia do not have the best chance to access life-saving technology. Currently our state and territory governments fund hematopoietic progenitor cell collection—let's refer to that mouthful as HPC from here on in. This collection is funded through grants or contracts with organisations and, to make matters worse, these can be separate agreements with each state and territory government.

We all know the limits that those in rural and regional areas face getting access to services and, at times, it can be difficult for people in remote and rural Australia to get to a collection centre. This means there is more dependency on international donors. The registry size and donor demographics are not aligned with Australia's population and HPC transplantation needs. Currently, the registry of HPC donors is managed by the Australian Bone Marrow Donor Registry under contract by the Commonwealth and cost shared with states and territories. The recruitment of the HPC donors is managed by Lifeblood under contract by state and territory governments. Something needs to be done about this. Australians deserve to have access to the best and most modern technology when it comes to their health. Australians should be confident that when they need medical procedures they are in the best hands in the world with access to the most up-to-date procedures and technologies. In this country we pride ourselves on our health system and we need to live up to it.

This government believes Australians deserve nothing but the best. We are going to get on with the job and work to address the issues in our bone marrow donation system. The Minister for Health and Ageing, Mark Butler, is going to start by discussing with health ministers the best way to cut through some of the red tape and clear the way for donor recruitment, because, at the end of the day, there is nothing more important than the health of Australians.

Bob Katter (Kennedy, Katter's Australian Party) Share this | Link to this | Hansard source

My attention was drawn to this issue in a number of ways. A person in my electorate, a girl of 13 from the Atherton Tablelands—a lovely kid—died. Another person in the electorate had a match but it came too late. She and her husband were a most attractive couple and it is heartbreaking to look at the photographs of them together. My own nephew, Liam O'Brien, scored a match, so he has gone from a life expectancy of arguably three or four months to a normal life expectancy. That is the magical thing about bone marrow.

We have 100,000 people, I'm informed, on the register. To be in line with other countries, we should have 200,000. I can't see any reason why we can't get to one million. I thank my colleagues Monique and Bert, and my other colleagues that have come forward to form a committee with Kate Thwaites from the ALP that will take this matter forward. We send bone marrow overseas and they send bone marrow over here. Well, $12.8 million has been locked up for a number of years. It needs to be freed up and given to Lisa Smith's authority, which can then proceed to have people go into the university colleges. When I heard about this, my mind went straight back to my university college days. I was president of the university college, and we were approached about blood donations. That is not a very intrusive as a procedure. Putting a swab in your mouth is not an intrusive procedure at all. I couldn't see anyone in the college objecting to it. We put it to the college council, everyone agreed and nobody disagreed. It was that simple to get blood donations from 200 university students. If we approached every university college in Australia—as we approached St Leo's Catholic College, which is my old college and that of Liam O'Brien—I'm sure they'd have said yes. The college executive met with us and said, 'Yes, of course we will give it.' They've taken 200 swabs and are proceeding to do it. But Lisa Smith has got to approach some 300 or 400 university colleges in Australia, and she needs personnel to do this. She also has to pay for the swabs, and they may come in at $50 a swab by the time you get them processed and everything else. She needs money.

I was a platoon commander, a sergeant, when we were at war with Indonesia, and I was rung up and told we were giving blood and to be ready to send my platoon over the next day or the day after. So, whether it was a university college or the armed forces, we said, 'We're doing it,' and no one disagreed. There was not a single person who disagreed, either in my platoon or my university college. So I immediately thought of the armed forces of Australia, and there are about 50,000 people there that are in the right age group—remember, it has to be 18 to 35, though Monique and all of us agree that it has to be extended to 40. I refer to my chair and my secretary over here on that matter. The vast bulk of the armed forces fit within that category. For medical faculty students—nurses or doctors or whatever—all we need to is walk into the lecture room, put it on the desks and say, 'Would you mind doing a swab and leaving it in the bin as you walk out, please?' (Time expired)

Mike Freelander (Macarthur, Australian Labor Party) Share this | Link to this | Hansard source

I thank the member for Forde very much for moving this motion and for the other speakers who spoke so eloquently about it. Robert was a lovely little boy. He was four years of age—really cute, a soft, gentle little kid. I was the oncology registrar at the children's hospital when Robert came in to our clinic, and I saw him. Unfortunately, he had acute myeloid leukaemia and had just relapsed. It was pretty obvious he had relapsed—he had a big liver and spleen, and bruising all over him. But he was still so nice and well-behaved, from a lovely family. They came from Campbelltown, which is in my electorate of Macarthur. A bone marrow transplant was experimental in those days—in our oncology unit there had been five previous attempts at bone marrow transplant and they'd all died. With relapsed AML the prognosis was very poor, with virtually 100 per cent mortality, so it was decided to put Robert through this experimental technique of a bone marrow transplant. He survived, and he was the first surviving bone marrow transplant patient in the Camperdown Children's Hospital at that stage. He went back to live in Campbelltown , and I ultimately got to represent him as the representative for Macarthur. That was in 1981—well over 40 years ago—and we have lagged behind ever since with our bone marrow registry.

There are roughly 270 children in Australia who are diagnosed with some form of blood cancer every year—most commonly with acute lymphoblastic leukaemia, or ALL, a significant number with AML and other types, and occasionally with lymphoma. The issue is that with our current system of bone marrow donation there are only about 150,000 people on the register. We have a very diverse population now. If we include the adults with bone cancer, eight in 10 people requiring bone marrow transplantation in Australia require a donation from overseas because our registry isn't big enough. We must increase the numbers. It is really long past time for us to have a national register to be able to provide bone marrow transplants from Australian donors for all who need it. Cheek swabs are a very effective and economical way of bringing additional donors to the registry, and we must include them. This is the type of technology that's used, for example, by the police force for DNA mapping of crime scenes et cetera. They've been using it now for many years, and we should have this as part of our registry.

A major obstacle, yet again, in our healthcare system is our federated system. This has created a number of obstructions to—

Bob Katter (Kennedy, Katter's Australian Party) Share this | Link to this | Hansard source

Hear, hear!

Mike Freelander (Macarthur, Australian Labor Party) Share this | Link to this | Hansard source

I'm pleased the member for Kennedy agrees with me! There are a number of obstructions to the development of a proper national bone marrow registry with large enough numbers because of our federated system. It is vital that our states and territories get together with our federal government—I know the health minister is very keen to do that, as he is with our organ donation system—to get a proper registry of bone marrow donors. I welcome the announcement by the minister for health that discussions with health ministers from around the country are about to begin to discuss how we can best cut through this jurisdictional and bureaucratic red tape and clear the way for donor recruitment. I congratulate all the members of parliament who were involved in getting this done, and I thank all the members for doing this.

It's been far too long—1981 was a long time ago, and I'm an old bloke now. For years we've been trying to get this together and we haven't done it—really, it's because of judicial and bureaucratic nonsense. That's all it is. We must proceed. We need to reverse the statistics. We need to have the vast majority of our donors coming from Australia to our Australian patients. I look forward to working with the minister for health and all the members of parliament to make sure this happens rapidly, because it's long past time. We should be doing this. Thank you.

Monique Ryan (Kooyong, Independent) Share this | Link to this | Hansard source

The Australian Bone Marrow Donor Registry is the peak body for bone marrow and stem cell donations in Australia. These are used for the treatment of life-threatening conditions like leukaemia, lymphoma, multiple myeloma and bone marrow failure. Every 31 minutes an Australian is diagnosed with a blood cancer. Many of those individuals will need bone marrow transplantation to cure these desperately severe illnesses.

Australians would benefit from greater access to bone marrow transplants but our registry of potential donors is shrinking, rather than growing. To join the registry, at this point, you have to be healthy and aged between 18 and 35 years, because younger people make the most successful donors for patients in need of a transplant. However, the average age of a donor registered with the Australian Bone Marrow Donor Registry at the moment is 45 years. The registry is currently losing approximately 7,000 donors a year, as donors are retired from the registry at the age of 60, but only 5,000 new donors are added each year. As we've heard, there are currently only 140,000 contactable donors on the ABMDR. More than 80 per cent of unmatched unrelated donors are currently coming from overseas, at a cost of $50,000 a donor, because we just don't have enough donors registered in Australia. We know that bone marrow transplants are more likely to succeed when the donor has a similar ethnic background to the recipient. Indigenous Australians and persons from ethnic minorities are hugely disadvantaged by our reliance on overseas donors. In many instances a match cannot be made for those individuals, and that failure can be life-threatening.

Australians are generous people who like to help others. Most of us would love to be able to save a life if we could. A bone marrow donor registry could be established very easily. All we need is consent from a donor and, as my colleagues have said, a painless cheek swab, but funding for recruiting and tissue-typing of potential donors is tied up in red tape. In 2019, the ABMDR established a pilot program called Strength to Give. It assessed how effectively it could recruit donors using home-delivered cheek swab tests. Similar kits are used every year to recruit millions of potential donors overseas. In July 2020 our government approved the recruitment of 6,000 donors through this pilot program, which was completed in April 2021. In that first year that recruitment included more than 4,360 ethnically diverse donors and more than 2,000 young men aged 19 to 35 years, but that pilot came to a halt at the end of 2021 because of a halt in the ongoing funding. Recruitment via cheek swabs, in addition to blood banks, has been demonstrated to be potentially rapid and cost effective, but it is not yet available to our population.

The ABMDR has $12.8 million in the bank, but our government will not allow it to access that money for donor recruitment and tissue typing. This beggars belief. The money is in the bank. It could be freed up today by our health minister with the stroke of a pen. It would allow the ABMDR to do its job and to save Australian lives. We could be finding new donors and saving the lives of critically ill patients within weeks. I ask the government to share the sense of urgency felt by those people and by their families. I ask the government to protect the best interests of our ethnically diverse populations and Aboriginal and Torres Strait Islander citizens by showing leadership and initiative today. I ask the government to show the same degree of generosity as exhibited by the many thousands of Australians who would like to join the Bone Marrow Donor Registry and who would like to have the opportunity to save a life today.

Meryl Swanson (Paterson, Australian Labor Party) Share this | Link to this | Hansard source

I'm pleased to speak today about the critical issue of the bone marrow donation in Australia and the importance of reform to deliver improved outcomes for Australians with blood cancers. As many of my esteemed colleagues have noted, we understand Australia has not moved fast enough to enable more effective matching of bone marrow donors with patients who need it, and I was particularly astounded to hear from my colleague the member for Macarthur that it is indeed the case that eight of 10 recipients still have to get bone marrow from overseas.

Could you imagine if everyone who did an Ancestry DNA test was also able to be matched up to be a blood donor? People are so desperate to find out, 'Where did I come from? What's my heritage? What's my ancestry? Who am I?' We could extend that just a little bit more to say, 'This is who you are, and here's how you could help someone who has blood cancer.' It's actually not that difficult. The technology exists right now, and we pride ourselves here in Australia on setting the standard when it comes to health and innovative treatments against disease. It's unclear really why Australia has moved so slowly over the past 10 years and in particular compared to some of those other countries we've spoken about, and this seems to be in part because no single government has taken sole responsibility or there's no leading authority. Again, as has been pointed out, sometimes our federation does fail us in matters like this, and it seems to me we do need to have some sort of coordination point for this particular registry especially.

The Albanese government wants to ensure Australians have the best chance to access life-saving technology, and I'm pleased the Minister for Health and Aged Care will be holding discussions with health ministers from the states and territories to ensure we cut through the jurisdictional bureaucratic red tape. It really hasn't served people with blood cancers well, and we do need to move forward. I think everyone, whether they're from the opposition, the crossbench or the government in this House today, has recognised that there is an issue. We can't go on not being able to source enough bone marrow to give our own fellow Australians what they need to have the best chance they can at being well.

We understand the Australian Bone Marrow Donor Registry is still recovering from the impacts of the pandemic, and that was just an additional knock on top. In the three years prior to the pandemic Australian patient searches grew at an average of 4.7 per cent per annum, and Australian patient transplants grew at an average of two per cent per annum over the same period. The pandemic has caused major disruptions, but we do need to move forward. The number of completed transplants involving unrelated hematopoietic stem cell are down 10 per cent in 2021, compared to the year prior. Off the back of the global pandemic, it has never been more critical that we see collaboration from all levels of government to improve health outcomes and restore the progress of the Australian health system, and especially the bone marrow registry. I am pleased that Commonwealth, state and territory governments have committed to reducing Australia's dependency on overseas donors. This will achieve meaningful improvement. We understand that the Australian bone marrow cancer register has identified that our donor pool should contain three per cent of Australia's population of 18- to 35-year-olds. I have also noted that there has been a call to raise that to 40. I think everyone will agree, including my colleague from Macarthur, that 40 is certainly the new 35, especially when it comes to bone marrow!

Julian Hill (Bruce, Australian Labor Party) Share this | Link to this | Hansard source

Fifty is the new 40!

Meryl Swanson (Paterson, Australian Labor Party) Share this | Link to this | Hansard source

I think 50 is the new 40! Thank you, member for Bruce, for that interjection. Increased recruitment can be delivered by the additional recruitment of non-blood donors with the easy-to-use cheek swab, as has been pointed out. I am pleased that the Albanese Government is delivering a million dollars from the cord blood export revenue account to increase bone marrow donor recruitment, and this will be delivered by the ABMDR. It's really important that we get this right, and I encourage you, please, to be a part of this bone marrow donation program.

Ross Vasta (Bonner, Liberal Party) Share this | Link to this | Hansard source

The time allotted for this debate has expired. The debate is adjourned and the resumption of the debate will be made an order of the day for the next sitting.