Organ donation numbers suggest time for change

Many thanks to Anne Cahill Lambert for this timely reminder about the decline in organ donation in Australia.

Anne writes:

In the first week of Good Government, it was unfortunate that the bad news genie continued to wreak havoc.  Not many noticed that Senator Fiona Nash, Assistant Health Minister, released Australia’s organ donor report for 2014.  It contained bad news for those who are desperately ill and need a life saving transplant.

Sadly, organ donor numbers dropped between 2013 (391) and 2014 when there were 378 multi organ donors.  My admiration for the families of those organ donors knows no bounds.  It is a selfless and generous act that is life changing for the recipients.  I hope they know what a huge impact organ donation has on those who are lucky enough to be recipients.

I have been a keen supporter of and advocate for the work of the Australian Organ and Tissue Authority (AOTA) over the years, but my loyalty is being tested.  The Minister’s press release was full of positive platitudes, viz., that organ donation numbers have increased by 39% since 2009.  Lovely.  Good Government.  Great Spin.

The Minister also gently chides the community for not having “the conversation” that would enable family members to know organ donation wishes in the event of death.

An analysis of the data that underpins the report shows that:

• Little headway has been made on organ donor rates in New South Wales since data was first collected in 1989.  In that year, NSW had 86 multi organ donors, while in 2014 it had 93 donors.  In 1989, more than one-third of organ donation occurred in NSW but by 2014 that number has reduced to just under one-quarter.
• South Australia was previously the leading jurisdiction for organ donation.   Between 2000 and 2008, SA had the greatest number of donors per million population (DPMP) for all except two years.  Subsequently, and since the introduction of the Authority in 2009, the Australian Capital Territory[*] and the Northern Territory have been the best performers on this indicator with SA slipping away to the middle of the field.
• Victoria is continuing to do the heavy lifting in terms of actual numbers – nearly one-third of actual organ donation occurred in Victoria.  Its DPMP has increased steadily from 14 in 2000 to 20 in 2014.

Why is NSW lagging so far behind every other jurisdiction?  If Australia is to improve its organ donation rate, it needs its biggest jurisdiction performing well, or at least on a par with other jurisdictions.

When the Authority was established, it was very clear that Commonwealth funding was being provided to support the donation process.  AOTA and the Department of Health were very clear that Commonwealth funding ceased once organs had been retrieved.  Thus, the States were responsible for funding actual transplants.

In 2012, a Victorian transplant centre closed its lung transplant unit for a month as a money saving venture.  The impact was significant, not just for Victorian patients but for those further afield including Tasmania, NSW and the ACT.[†]  Interestingly, transplant numbers declined in Victoria in that year, as did organ donor numbers.

I am unsure why a hospital or jurisdictional health authority would not budget for an increase in transplant numbers when they were committed to the establishment of AOTA, as well as a concomitant increase in organ donor numbers.  What did they think would happen when organ donor numbers increased?  Blind Freddy could figure out that transplant numbers would also increase and funding would need to be provided.

My thesis is that in times of budgetary constraint, organ donors will not be ‘found’ in hospitals that are also transplant centres, so that the number of transplants will be contained within budget.

The numbers bear this out.  The jurisdictions that do not have any transplant centres (ACT, Northern Territory and Tasmania) have all doubled the average number of donors since 2009.  They have also at least doubled the percentage of donors as a proportion of the total donor pool.

Victoria has succeeded in doubling its average, but other jurisdictions have not been as successful.

Thus, on DPMP rates, actual numbers and averages, the small jurisdictions are performing well, together with Victoria.  Sadly, this is not enough improvement to give any hope to anyone of the 1,700 people waiting for a transplant.  Or those who are not included in the waiting list because they are unlikely to receive a life saving transplant.

I doubt that the Commonwealth can make any headway on this unless and until it has control over the whole program, including the transplant side of the equation.  To do this, it will need to be responsible for the funding of transplants as well as organ donation.

Best practice in the organ donation sector is often identified as Spain.  That country has a donor rate of around 35 DPMP.  Australia’s rate in 2014 was 16.1.  If every suitable donor had in fact become a donor in 2014, based on AOTA’s report there would have been 640 donors, translating to a rate of about 27 DPMP.   Let’s say that 80% of that would be reasonable in a developing program, which would mean a DPMP rate of 21.6 or actual numbers of 512.  Unless Australia changes the criteria for organ donation, and I am not arguing that it should, it will not get to a DPMP rate above 30 unless death rates increase.

The other issue that is testing my commitment to the Government’s approach is the concept that somehow the community is the baddy (I’m using Good Government language here).

When I was on the Council for AOTA, I argued strongly that the messaging for the new campaign on focusing on having a conversation about organ donation was wrong.  This is because it is impossible to objectively measure a conversation and its success.  And what you cannot measure, you cannot manage.  Rather, I wanted a commitment to the Australian Organ Donor Register (AODR).

As an aside, a campaign that relies so heavily on a conversation but that has little or no money to promote it should be using social media exhaustively.  Since the data was released on 10 February 2015, the Authority has issued five tweets, three of which were re-tweets from others.  It only has 3,600 followers.  Whereas, the Australian Bureau of Statistics has 19,300 followers and has tweeted 18 times in the same period, when it has no report released and nothing in particular to sell.

I speak at a lot of community events on organ donation, and many people are keen to show me their organ donor card at the end of each event.  They are shocked to think that their family can overrule their decision in relation to organ donation.  I am therefore an enthusiastic supporter of the concept of First Person Consent, one that gives primacy to the donor’s decision.  Surely it’s an easier conversation in the ICU to start with “X wanted to be a donor; we’re going to go down that path” rather than “What do you think about donating X’s organs”?

The research from the USA shows that First Person Consent enables a stronger chance that families will endorse the decedent’s decision as well as satisfaction by the family in the whole process.

The Commission of Audit recommended that AOTA be merged with the National Blood Authority (NBA).  The Commission does not appear to have delved into the work of AOTA or indeed the NBA.  The Government has accepted this recommendation and the merger will occur on 1 July 2015.  The Senate Select Committee on Health investigated the merger and has found that the miniscule savings do not justify the merger.  Rather, the loss of focus may result in a decline in organ donor numbers.

It is time to have a good hard look at the role and function of AOTA five years after its establishment.  It has not refreshed its approach since the heady days of 2008 and 2009 during its conception.  Neither has it embraced the technology available to it, such as social media or the AODR.

I would suggest that within the first month of Good Government, the following action should be taken:

• Reverse the decision to merge AOTA.
• Take responsibility for funding transplantation as well as organ donation:  a good deal of negotiation will be required to succeed here, but organ donation will continue to be at the vagaries of jurisdictional budgets unless this is done.[‡]
• Use what we’ve got, particularly the AODR and social media, but the technology around the AODR needs to be enhanced.
• Adopt First Person Consent.

Australia may then have a chance of giving hope to those languishing on waiting lists as well as those who aren’t even able to get a ticket in that lottery.

Thank you again to all the families of organ donors.  The commitment is an enormous one.  Staff in donor hospitals and transplant centres are also magnificent and have worked tirelessly to improve Australia’s performance in the organ donor sector.  We owe it to both these groups of people to ensure that there is Good Government and Good Governance around the sector to support and enhance the health of all Australians.

Anne Cahill Lambert, AM, is a former Council member of the Australian Organ and Tissue Authority and the NHMRC.   She has much to say on a range of matters, especially consumer participation in the health sector.  She’s on twitter @ACLambert