Australians Are you confused about organ donation?

Robyn Riley | Herald Sun

HANDS up if you are as confused as I am when it comes to what’s happening with organ donation in Australia?

First we had former governor-general Michael Jeffery, on behalf of ShareLife, claiming that hundreds of Australians had died waiting for an organ while $151 million set aside by the Federal Government to improve donation rates was being squandered on bureaucracy and ineffective advertising.

If true, that is shameful and every Australian should be up in arms.

ShareLife does not have an axe to grind. It is a not-for-profit advocacy group of about 100 high-profile Australians who are passionate about fixing what it considers a dysfunctional organ-donation system.

But at the same time Major-General Jeffery was calling for more accountability, the Federal Government announced Australia’s best organ donation rates in history, with Victoria achieving the most outstanding results.

Who do we believe?

To be fair, organ donation rates are improving - just not as quickly as they should be if, ShareLife says, the money was being spent in the right way.

ShareLife member and businessman Garry Browne said the Australian Organ and Transplant Authority and the Government may be happy with things so far, but he said the rate was mediocre.

Parliamentary Secretary for Health and Ageing, Catherine King, doesn’t think there is a problem.

She spoke this week about the national reform package and reminded us that the aim was to implement a world’s best practice approach to organ and tissue donation for transplantation.

Sounded like she pretty much thought everything was going to plan.

ShareLife disagrees.

It maintains that much of the $151 million is being directed to the wrong areas and suggests some radical changes. For starters, scrap the organ donation national registry and invest more money in highly trained and skilled doctors and nurses who can seek family consent.

Forget the expensive publicity campaigns, ShareLife suggests.

Australians already have the message about the need for organ donation. It says registering isn’t the problem, offering as evidence that between 2002 and 2006 an extra one million Australians registered to donate organs.

The problem is that over the same period, the level of actual donations declined.

I think part of the problem is the scattergun approach of organ donation in this country. People I have spoken to are unsure if they should register through Medicare, on their driver’s licence, online or through a foundation.

And when they do sign up, family or next of kin still need to give consent before organs can actually be donated.

It is complicated and confusing. We need it to be simple and efficient . . . three years into the reform package we shouldn’t even need to be having this debate.

Experts such as transplant surgeon Dr Deb Verran - also a ShareLife spokesperson - said the registry was not necessary if hospitals had trained teams who could approach families when a loved one was dying.

And I thought that was the exact opposite of what was needed: that the last place a family wanted to talk about a loved one becoming an organ donor was in a hospital waiting room.

“If you have highly trained and skilled professionals, as they do in the US, Spain and other countries, it seems to make a difference,” Dr Verran said.

“This way, it is the professional who is asking for consent.”

Obviously it helps if the family knows the donor’s wishes beforehand, but this method could make it a more streamlined and potentially more productive procedure.

I like it, a lot.

And while there is no doubt Victoria is doing well with its transplant numbers, Dr Verran said that success was not being replicated across the country.

To be honest, I am disappointed it has come to this; that something so important to the health and future of so many Australians is being distracted with confusing debate.

How can we have on the one hand some of Australia’s most senior organ transplant specialists applauding the Government’s performance update and on the other, an advocacy group warning something is seriously flawed with the system?

This shouldn’t be about point-scoring or saving face or politics, we simply need to get behind the best system possible to save the most lives.

In short, we have to be careful not to lose sight of what is really important here.

Let me remind you.

I FIRST met Glenn Tebble about four years ago when the cystic fibrosis sufferer was seriously ill and living in The Alfred, awaiting a double lung transplant.

About two years ago the 37-year-old received a transplant and said his life was now surreal.

“I’m doing all the things I wanted to, and more,” he said. “Words can’t express the gratification I feel.”

Glenn told me that he had 35 years of struggle and hardship and that it was hard to articulate what the transplant meant to him.

“I feel really blessed.”

He knows that without a transplant he would not be here today and said he thought of the donor and the donor family every day.

“ I am going to write to the family next week,” Glenn said. “It has taken me this long to know what I wanted to say.

“I want to tell them what my life is now like, and I want them to see that I treasured the gift they gave me.”

That is what improving our organ donor and transplantation rates is all about.

There is no place for egos and grandstanding in this, not when lives are at stake.