Helen Polley (Tasmania, Australian Labor Party, Shadow Parliamentary Secretary for Aged Care) Share this | Hansard source

I rise to speak on the Australian Organ and Tissue Donation and Transplantation Authority Amendment (New Governance Arrangements) Bill 2016. This bill amends the Australian Organ and Tissue Donation and Transplantation Authority Act 2008 to establish the Australian Organ and Tissue Donation and Transplantation Authority Board, abolish the existing Australian Organ and Tissue Donation and Transplantation Authority Advisory Council and transfer responsibilities currently invested in the CEO to the board.

Before I get into the detail of this legislation I want to briefly comment on the recent history of organ donation policy. The Australian Organ and Tissue Donation and Transplantation Authority, also known as the Organ and Tissue Authority, was established in 2009. It was the Rudd Labor government which established the Organ and Tissue Authority as part of the national reform program to implement a world's best practice approach to organ and tissue donation for transplantation. The program consisted of nine key elements: establish a new national approach and system for organ and tissue donation—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; national eye and tissue donation and transplantation; and undertake additional national initiatives, including living donation programs.

The program was announced in July 2008, and Labor committed $151.1 million over four years to improve access to transplants through a nationally coordinated approach to organ and tissue donation. In July 2013, the Supporting Leave for Living Organ Donors Program was introduced by Labor as a two-year pilot program. Living organ donors make an incredible sacrifice to help the life of someone else, often but not always a family member. Donating an organ is not risk free. Major surgery is required. Donors who work need to take leave while they recover. Consequently they may use up a large amount of their leave or, worse, have to take leave without pay. That can impose a financial burden, which could act as a disincentive to donate in the first place, or could encourage people to return to work before they should do so. The Supporting Leave for Living Organ Donors Program aims to minimise that financial burden. It does so by reimbursing employers for payments or leave credits provided to employees for leave taken to donate an organ and to recover from the operation. Following the conclusion of the pilot program, the coalition increased the support provided and extended funding for the program for another two years.

A review of organ donation and transplantation was also announced in May 2015. Ernst and Young were commissioned to carry out the review, which was completed in August 2015 and released by the government in February this year. The review found:

Since the implementation of the national reform programme in 2009, there has been an overall increase in the dpmp—

deceased donors per million population—

by 41% (11.4 dpmp in 2009 compared to 16.9 dpmp in 2014).

Some time has passed since the review and, whilst in 2014 we saw a slight drop in donation rates, the 2015 figures recovered and improved to 18.3 dpmp, slightly exceeding the 2015 target. There were 435 deceased organ donors in 2015—an increase of 76 per cent over 2009. Those 435 donors made an enormous difference to the lives of 1,241 Australians.

It is clear that Labor's program has been met with considerable success and that this review represents an overwhelming endorsement of our reforms. With organ donation rates, however, particularly as there are more than 1,400 people on a waiting list in any one month, there is always room for further improvement. Meeting the target of 25 dpmp by 2018 will require the rate of improvement to increase. That is not an easy task. However the donation rates for deceased donors per million population vary significantly between states and territories, which in 2015 were: New South Wales, 17.2; Victoria, 21.2; Queensland, 15.1; South Australia, 24.7; Western Australia, 16.2; Tasmania, 17.4; Northern Territory, 16.4; and Australian Capital Territory, 21.2. Those figures demonstrate that 25 dpmp is achievable.

Nevertheless organ availability is low partly because only around one per cent of deaths which occur in a hospital happen in the specific circumstances where organ donation is possible. That leads to just under 1,000 requests to families for donation being made. In 2015, the acceptance rate by families was around 60 per cent. After the request for donation was accepted, around a quarter of those transplants did not proceed for clinical reasons. The acceptance rate is an area where further improvement is possible. When families do not know what the deceased's wishes would have been, they are far more reluctant to agree to donation and only around half agree. Sadly, the request for donation comes at an extremely difficult time for the family and the decision is no doubt much harder to make when the deceased's wishes are unknown. However, if the deceased had registered their decision to donate, over 90 per cent of families agreed to the donation. That means getting more people on the register is crucial to improving donation rates. That has been occurring, and, while there are around six million people on the register, that figure could be much higher. Registration on the Australian Organ Donor Register is normally very simple and can be done online, by a form or even through the Medicare express phone app.

To return to the review: it made 24 recommendations, five of which relate to governance of the Organ and Tissue Authority. Those five recommendations all deal with replacing the existing advisory council with a board of governance. The governance arrangements for the Organ and Tissue Authority are currently advisory only, and the review found that 'the strategic oversight of the DonateLife Network as well as the performance monitoring, succession planning and mentoring of the Organ and Tissue Authority CEO will be improved by the introduction of a board of governance for the Organ and Tissue Authority that will be responsible for these functions.'

The board of governance established by this bill will comprise eight members, including the chair, deputy chair and CEO. The CEO will manage the day-to-day administration of the Australian organ and tissue donation transplant authority, although the board may delegate some of its functions to the CEO. Before appointing a deputy chair, the minister is required to request nominations from each state and territory health minister and consider those nominations. A similar process occurs with respect to other board members with nominations from the COAG Health Council. The deputy chair and the board members are also required to have substantial experience in or knowledge of at least one of a number of healthcare fields. The chair, however, is nominated by the Commonwealth and is only required to have substantial experience in or knowledge of public administration, business or management.

Organ donation policy is an area where a bipartisan approach has been and should be taken. Labor therefore appreciates the government's commitment to consult the opposition on the selection of the chair. Board members' terms are limited to four years. Remuneration will be determined by the Remuneration Tribunal or the remuneration that is prescribed by the regulation if no determination is in operation. The transition from advisory council to a board of governance is expected to cost an additional $200,000, which I understand is to be met from existing funding arrangements.

Aside from the governance recommendations, the review also recommended publication of the breakdown of state and territory funding on the Organ and Tissue Authority website, that organ and tissue donation data be made public on hospital-by-hospital and state-by-state bases, that minimum standards for auditing of organ donation practices be defined, that the DonateLife Network monitor the proportion of ICU specialist staff and trainees in each hospital who have been trained in having the donation conversation with families, that states and territories clearly define who is responsible for organ donation rates in their jurisdiction and proceeding with a one-step online donor registration process. Whilst I do not know the status of each of these recommendations and they are not subject to this bill, the donor registration process is now quick and simple in most cases.

I would like to take this opportunity to thank the Organ and Tissue Authority, the advisory council members, clinicians and hospital staff for their work and, most importantly, the donors and their families for giving such an important gift to others.

In summary, whilst the governance changes are relatively minor, they may improve the accountability and transparency and therefore the operations of the authority. If the result is even slightly higher donation rates than would otherwise have been the case then it will have been a very worthwhile step. But I would also like to place on record that so many of us are touched by either having a family member making a donation or being a recipient. I have to put on record that my cousins Michelle and Robert Polley of Launceston lost their young son very tragically. The amount of lives that he was able to give the opportunity for the greatest gift of all I would like to place on record. I urge everyone in this chamber to support this bill, as I am sure they will. Labor therefore will be supporting the bill, and I commend it to the Senate.