Tony Zappia (Makin, Australian Labor Party, Shadow Parliamentary Secretary for Manufacturing) Share this | Link to this | Hansard source

This bill, the Australian Organ and Tissue Donation and Transplantation Authority Amendment (New Governance Arrangements) Bill 2016, amends the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 to do three things: firstly, establish the Australian Organ and Tissue Donation and Transplantation Board; secondly, abolish the existing Australian Organ and Tissue Donation and Transplantation Authority Advisory Council; and, thirdly, transfer responsibilities currently vested in the CEO to the board.

The CEO's role once the board is established will be to manage the day-to-day administration of the authority. The eight-member board will have a chair, deputy chair, CEO and five other members. It will be formally appointed by the Commonwealth minister on a part-time basis, and the chair will be nominated by the Commonwealth. With respect to the appointment of the chair, I thank the government for offering to consult the opposition over the appointment of the chairperson.

Before appointing the deputy chair and board members, the minister must request that the jurisdictions provide a written notice nominating one or more persons for the role of deputy chair and the COAG Health Council to provide a written notice nominating persons for appointment as board members. Board members are to be paid the remuneration that is determined by the Remuneration Tribunal or, if no determination is in operation, the member is to be paid the remuneration that is prescribed by the regulations. The existing advisory council members are remunerated according to the Remuneration Tribunal determination.

The bill also provides that the board may delegate some of its functions to the CEO. It further provides that the chair is to have substantial experience in or substantial knowledge of public administration, business or management. Board members, including the deputy chair, are required to have substantial experience, or substantial knowledge of, at least one of the following fields: public hospital administration; community leadership or representation in relation to organ or tissue donation and transplantation; consumer health issues; promotion of health issues; any other appropriate field of expertise; or the person has substantial clinical expertise in organ or tissue donation; or the person has substantial clinical expertise in organ or tissue transplantation; or the person is a consumer of health services.

By way of background, in 2008, then Prime Minister Kevin Rudd committed to making organ and tissue donation a national priority. The Australian Organ and Tissue Donation and Transplantation Authority—also referred to as the organ and tissue authority or simply the OTA—was established as part of the national reform program in 2009. The nine key elements of the national reform program were to establish a new national approach and system for organ and tissue donation; establish a national authority and network of organ and tissue donation agencies; establish specialist hospital staff and systems dedicated to organ donation; provide new funding for hospitals; provide national professional education and awareness; provide coordinated, ongoing community awareness and education; provide support for donor families; establish a safe, equitable and transparent donation and transplantation network; promote national eye and tissue donation and transplantation; and undertake additional national initiatives, including living donation programs.

The OTA is an independent statutory agency within the Australian government health portfolio. Currently there is no board of governance responsible for the overall strategic performance of the organisation; however, an advisory council was established to provide advice to the CEO. The OTA manages the implementation of the national reform program through leadership of, and collaboration with, state and territory medical directors, DonateLife agencies—of which each state has one—and hospital medical and nurse specialists in organ and tissue donation. These people and organisations comprise the DonateLife Network. State and territory governments, through funding agreements with the OTA, deliver organ and tissue donation services in the public hospital sector and, where mutually agreed, in the private hospital sector as part of the national reform program. States and territories use these funds to employ the DonateLife Network staff, in accordance with a nationally consistent organ and tissue donation service delivery model.

The proposal to abolish the advisory council and replace it with a board arose from the recommendations of the Ernst and Young review, which was commenced in June 2015 and reported in August 2015. The Ernst and Young review made 24 recommends, of which five deal with governance. All five recommendations are reflected in the bill. I want to go through those five recommendations individually, because they are all relevant to this legislation. Recommendation 5:

The Australian Government should consider amendments to the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 to establish a Board of governance of seven to nine people to govern the OTA.

Recommendation 6:

The Chair of the Board of governance should be an experienced leader of public hospital organisations, but need not be a clinician.

Recommendation 7:

The skill base of the Board should include community leadership, health promotion expertise, DonateLife Network clinical expertise, transplantation clinical expertise, consumer experience, and communication skills.

Recommendation 8:

The Chair should be nominated by the Australian Government, the deputy Chair nominated by the states and territories, with the balance of members nominated collectively by the Council of Australian Health Governments Health Council (CHC) members.

And recommendation 9:

The members should be appointed for a term of four years by the Australian Government Minister, with staggered appointments at the commencement of Board of governance operations.

There has been considerable debate over the years about the need to raise organ donation rates throughout Australia. Much of the increase from 11.4 deceased donors per million population in 2009 to 18.3 in 2015 is a consequence of Labor's reforms. However, Australia is still well short of the target of 25 donations per million people.

The following statistics highlight the difficulty in finding donors. In 2015, there were almost 154,000 deaths in Australia, of which around half, or 74,000, were in a hospital. Of those, 970, or a little over one per cent, were in the specific circumstances where the potential for organ donation was identified. Nine hundred and forty requests to families for donation were made and 564 families consented. There were 129 cases where family consent was given, but donation did not proceed for clinical reasons. This resulted in 435 deceased organ donors for the year.

What can be done to improve that figure? We know that, in 2015, 91 per cent of families agreed to donation where the deceased had registered their decision to donate. That figure drops to 52 per cent if the deceased was not registered and the family had no prior knowledge of their wishes. This highlights the importance of registering on the Australian Organ Donor Register. Currently, there are around 6.2 million people on the register, which includes about 26,000 who do not wish to donate. Around 150,000 signed up in the year 2015-16. Clearly, ensuring that families know the deceased's wishes through greater participation on the Organ Donor Register will maximise the number of requests that are agreed to. I note that South Australia is currently the only jurisdiction where a person can register their organ donation decision via their driver's licence. Interestingly, 64.7 per cent of South Australians over the age of 16 are on the Organ Donor Register. That is a much higher figure than for the rest of Australia, and it is perhaps something that we should consider looking at to see if the other states might benefit by applying the same system.

I want to turn for a moment to living donors. Whilst most of the focus has been on deceased donors, we should not ignore the incredible gift that living donors give, often to a close family member. In 2015, according to the OTA's annual report, there were 245 recipients of living donor organs. I note, however, that that figure has been trending downwards over the last three consecutive years. Living organ donation requires major surgery and, if the living donor is working, they will almost certainly need a significant amount of time off work for recovery. Some donors may have to take leave without pay, or may exhaust their paid leave entitlements during the recovery period. Labor introduced supporting leave for living organ donors as a two-year pilot from July 2013 to June 2015. The aim of the program was to help alleviate the financial stress that living organ donors may experience, by reimbursing employers for payments or leave credits provided to their employees for leave taken to donate an organ and recover from the procedure. The government followed that lead and has continued the program for another two years until June 2017.

Organ donation and transplantation saves lives and changes lives. The waiting lists for organs, however, are lengthy, often causing further health complications, additional health costs and productivity losses. I do not know if any cost-benefit studies on organ transplant have been carried out, but the figures would be interesting. There is financial and social urgency in lifting organ and tissue donation rates. One of my concerns about doing that is the shared responsibility between the federal government and the states and territories for organ and tissue donation and transplantation. Commitment to the program by each of the jurisdictions appears to vary and to be linked to the budgetary health priorities of each jurisdiction.

Establishing a board of governance to whom the CEO will report and be accountable is expected to make the authority more effective. However, an increase in organ donation and transplantation comes at a cost. Each transplant incurs a cost, both in the donation and the transplantation process, so raising transplantation rates will inevitably require additional funding. How that funding is to be provided, and by whom, is a matter that cannot be ignored if governments are serious about raising organ and tissue transplants.

Whilst considerable progress has been made, organ transplantations are still complicated matters. The medical professionals who carry out the procedures deserve our gratitude. It is through their work and research that lives are changed. In an article which appeared in the Adelaide Advertiser last Saturday, 19 November, Professor Toby Coates, director of kidney and pancreatic transplantation at the Royal Adelaide Hospital, commented on some research that was being carried out relating to kidney transplants at the hospital. Professor Coates said of the cold perfusion that is currently used:

… when we preserve an organ, it is put onto ice and kept at 4C until the person arrives for the transplant.

He went on to say:

What we want to do is warm profusion, so instead of chilling the kidney down, we would put it on a pump system to keep it at 37C and ticking over with oxygenated blood.

I commend Professor Coates and his team for the research they are carrying out. I have no doubt many other dedicated medical professionals are also continuously looking at improving the existing procedures.

In closing, I take this opportunity to thank and acknowledge the work of the organ transplant authority advisory council that has existed to date and all of the members that formed part of that council for the good work that they have done. It was, indeed, under their stewardship that the organ donation rates went from about 11 to 18 per million people in this country, which is a considerable increase. I also especially thank David Koch for his contribution as the chair of the OTA for a long period until he stepped down about a year ago. I have no doubt that his contribution was also a significant reason why the rates of donation went up. Labor supports this legislation for the reasons I have outlined. I again thank the minister, who is here at the table, for offering to consult with Labor with respect to the appointment of the chairperson for the board.

Rebekha Sharkie (Mayo, Nick Xenophon Team) Share this | Link to this | Hansard source

I support the Australian Organ and Tissue Donation and Transplantation Authority Amendment (New Governance Arrangements) Bill 2016 because it gives effect to recommendations about governance and accountability in the report Review of the implementation of the national reform agenda on organ and tissue donation and transplantation. One of the observations in the review related to the advisory nature of the governance arrangements for the Organ and Tissue Authority, specifically the fact that they do not provide strategic oversight, performance monitoring, succession planning or mentoring of the CEO. So it is clear that a stronger leadership role would be beneficial at the national level if we are to achieve greater national consistency as well as an increase in donor rates. Stakeholders in the sector are broadly supportive of establishing a skills based board of governance for the Organ and Tissue Authority that will become the accountable authority and will set strategic direction.

We all recognise the complexities surrounding organ and tissue donation and transplantation. These are in part caused by the complexities of our health system and the fact that it is overburdened. But I am concerned that we have spent around $240 million over six years and have only achieved an increase of 3.9 in our deceased donors per million population rate. Over 1,000 Australians die each year because they have not been able to receive an organ transplant, and for many we know this is a preventable death. The waiting and hoping while your health deteriorates must be excruciating. Significantly, only one per cent of people die in circumstances which enable organ donation.

So, while improving governance and accountability is important, I believe we should be learning from the experience of other countries which have higher rates of donation than others. Which country has the highest deceased organ donation rate in the world? Spain. One of the major reasons is that they have an opt-out system. While the families still have a final say, the initial assumption under the law is that the default position of consent to donate organs has been given unless otherwise stated. We see an interesting trend when we compare the deceased organ donation rates in pairs of countries that are similar. For example, Austria and Germany are culturally similar and yet their organ donation rates differ drastically. Germany has only 10.45 deceased donors per million population, while Austria's rate is 150 per cent higher at 25 deceased donors per million population. Guess which country has an opt-out system. Yes, Austria.

Similarly, the Netherlands and Belgium have quite different rates. Belgium, which has an opt-out system, has a deceased donor rate of 27 per million whereas the Netherlands, which, like Australia, has an opt-in system, has a rate of only 17 per million. However, the Netherlands have recognised that his needs to be an area addressed. In September this year, the Dutch parliament considered a bill to introduce an opt-out system, meaning that everyone would be an automatic donor unless they request not to be. It has passed their House of Representatives and is now being considered by the Dutch Senate.

Australia is ranked a disappointing 22nd in the world for its rate of deceased organ donation at 16 per million—just 16 people per million Australians! A relatively small percentage of people do not register as donors because they object on religious or philosophical grounds. And, of course, that is their right; it is perfectly acceptable. But I think that one of the reasons our rate is so low is not because people do not want to donate but because many people are genuinely apathetic. If we are required to take action—for example, to opt into an organ donation scheme—people just do not quite get around to it.

I believe that if this bill passes—and I understand that, with the support of Labor, it will—the newly constituted board should have one of its key priorities the introduction of a nationwide opt-out system for organ donation. Of course, this would require extraordinary cooperation from the states and territories. Importantly, we must ensure that people are able to opt out easily if they have personal objections to organ donation for whatever reason. However, the introduction of an opt-out system is a worthwhile aim. The reversal of the burden will take action and save many lives.

Ken Wyatt (Hasluck, Liberal Party, Assistant Minister for Health And Aged Care) Share this | Link to this | Hansard source

The Australian Organ and Tissue Donation and Transplantation Authority, known commonly as the Organ and Tissue Authority, is responsible for the implementation of the Australian government national reform program on organ and tissue donation for transplantation. On 2 February this year, the then minister from rural health, Senator the honourable Fiona Nash, released the findings of the Ernst & Young review of the national reform program on organ and tissue donation for transplantation. The Ernst & Young review examined the respective contributions to the reform program for the Organ and Tissue Authority, state and territory governments, DonateLife hospitals and clinicians. The Ernst & Young review found that the implementation of the national reform agenda had been broadly effective. However, there is scope for improvement in the areas of governance, transparency and accountability.

To improve these key areas in line with review recommendations the bill will establish a board to govern the Organ and Tissue Authority under the Australian Organ and Tissue Donation and Transplantation Authority Act 2008. These new arrangements will also improve the strategic oversight of the DonateLife network, as well as the performance monitoring, succession planning and mentoring of the CEO.

As part of the bill, the functions of the CEO will transfer to the board once established. The board will assume the role of the accountable authority under the Public Governance, Performance and Accountability Act 2013 and be the decision-making body for the organ and tissue donation authority. The CEO, who will have responsibility for the day-to-day administration of the Organ and Tissue Authority, will also be a member of the board. This arrangement has been instituted to improve transparency and operational efficacy of the Organ and Tissue Authority and will ensure that the strategic and policy objectives of the authority are effectively integrated in the day-to-day operations and activities. The board may also choose to delegate some of its functions to the CEO to ensure the Organ and Tissue Authority remains agile and responsive.

The board will have a skills-based membership, harnessing expertise, experience and knowledge from a broad range of areas. The Commonwealth will nominate the chair of the board. The jurisdictions will nominate the deputy chair, with the remaining five members nominated by the COAG Health Council. All board members will be appointed by the responsible Commonwealth minister. The CEO will be appointed by the Commonwealth minister in consultation with the chair of the board. The bill retains the ability for the Commonwealth minister to give policy principles to the authority about the performance of its functions.

The establishment of the Organ and Tissue Authority board will improve accountability and transparency and will better support the authority to be more effective in achieving its strategic goals: saving lives and improving the quality of the lives of more Australians.

I thank the members for Mayo and Makin for their contribution and I would like to acknowledge the member for Port Adelaide for his prize stewardship when he had responsibility for the authority. I commend the bill to the House.

Question agreed to.

Bill read a second time.