Can policy changes lead to an increase in organ donations?
[Sorry, the video for this story has expired, but you can still read the transcript below. ]
SARA JAMES: It’s just after dawn in one of the world’s most beautiful cities – this misty morning a picture perfect start to the day. And Damien Blumire looks the picture of health. But the image is deceptive.
DAMIEN BLUMIRE: I’ve been waiting for a kidney transplant and I need to keep myself as fit as possible to give myself the best chance of recovering from major surgery.
SARA JAMES: Damien inherited a rare form of kidney disease from his mother. It claimed her life when he was just a boy. The fact that Damien’s kidneys don’t work affects the simplest of rituals – even his choice of morning coffee.
DAMIEN BLUMIRE: G’day, I’ll have a double espresso
SARA JAMES: Cappuccino has too much milk – and he hasn’t had soup in a decade.
Damien must ration all liquid because his body can’t get rid of fluid, putting him at risk of swelling, heart damage, or a stroke from high blood pressure.
DAMIEN BLUMIRE: You have to consider the amount of water that a bowl of rice consumes when it is cooking for example all those things get taken into account and because my body can’t get rid of those things I count all those things over a two day basis
SARA JAMES: Damien’s unquenchable thirst also prompts a dream.
DAMIEN BLUMIRE: Just being able to go to the sink and drink a glass of water, fill my stomach with water. Of all the basic needs, that is it.
SARA JAMES: So every other day Damien does what nearly 400,000 Americans do —
SARA JAMES: So this is where you do dialysis–
DAMIEN BLUMIRE: It is. This is the dialysis room.
SARA JAMES: Without dialysis he would be dead in a few weeks. The machine removes extra water, waste and salt from his body and keeps chemicals like potassium at a safe level in his blood.
The software programmer is tethered to this machine an average of 25 hours a week.
Australia has universal health care and Damien’s dialysis treatment – more than $50,000 a year – is covered by the government. It’s a life-saving procedure, but not a cheap or easy one.
DAMIEN BLUMIRE: The dialysis involves putting a couple of needles in your arm and the machine works as your artificial kidney for 5 hours – unfortunately putting needles in your arm gives your arm a bit of a beating and I’m not looking too pretty these days.
SARA JAMES: But there’s another cost. For more than ten years – more than 3,800 days and nights – Damien has kept his cell phone within arm’s reach, hoping for a call instructing him to rush to the hospital because a compatible kidney has been found. But when we talked to him in February, the call still hadn’t come. The uncertainty is hard on him and his two young sons, and he says it is one reason his marriage floundered.
DAMIEN BLUMIRE: Living with someone who has a chronic illness is almost as difficult as having a chronic illness. It basically changed who we were as people over the ten years.
SARA JAMES: Damien’s story is typical of those in the United States and Australia seeking organ transplants. In Australia, the average wait for a kidney is 4 years; in America it’s three to five years depending on blood type.
But now a new Australian initiative has raised the donation and transplant rates here to the highest level in a quarter century.
YAEL CASS: The key thing that we’ve done is that we’ve picked best practice from around the globe.
SARA JAMES: Yael Cass is the CEO of the Organ and Tissue Authority – set up to oversee the 151 million dollar national reform package, which went into effect in 2009. The Organ and Tissue Authority has intensified efforts to increase community awareness across Australia.
PUBLIC SERVICE ANNOUNCEMENT: My name is Jessica–
SARA JAMES: With public service announcements like this one to encourage more people to sign up as donors.
PUBLIC SERVICE ANNOUNCEMENT: Organ and tissue donation is very important to talk about with your family to know the wishes of your loved ones for when they’re not here so they can give someone a second chance like I got. Because being given the gift of life is the greatest gift.
SARA JAMES: The Australian government has also offered specialized new training to some 600 health professionals. They have the difficult role of talking to family members when the opportunity for organ donation arises as a loved one is dying.
Created Australia’s first paired kidney exchange in 2010 to increase live donor kidney transplants. A sophisticated computer is used to identify matches between sets of would-be donors and would-be recipients.
And instituted paid leave for living donors. The 1.3 million dollar initiative reimburses employers for giving donors time off work to recuperate from major surgery.
The program began last year and Rosemary Wehbe was the first to sign up.
A photography teacher at a Sydney Boys’ School, photos also reveal Rosemary’s greatest love – family. When her brother Simon learned he needed a kidney, she was delighted she proved a match.
ROSEMARY WEHBE: Last year he had three operations and they were quite hard, and seeing your brother suffering I just thought if I can do something I will do it.
DOCTOR: How are you going with the pain?
ROSEMARY WEHBE: Oh getting much better.
SARA JAMES: But it took time to recuperate from surgery – and Rosemary was thankful her time off was paid. She received just over $600 a week for six weeks. Her employer was reimbursed by the federal government.
ROSEMARY WEHBE: I didn’t have to worry that I am using sick pay that I had saved up or using something that I don’t have.
DR. JEREMY CHAPMAN: That’s pretty good kidney function – it’s working very well. That was good of your sister wasn’t it!”
SARA JAMES: Initial signs suggest the new program is encouraging more people to be living donors – helping more people like Rosemary’s brother.
SIMON WEHBE: What is it like to feel like someone saved your life? I owe her my life, really.
SARA JAMES: While living donors are important, some organs can only come from deceased donors, who must register their consent. But since a potential donor’s decision can be overridden by distraught relatives, Cass says training staff for conversations with grieving families is key.
YAEL CASS: Organ donation is actually an incredibly rare event. Less than 1 percent of people that die in hospital are potential for organ donors in Australia. Its’ a small number and we need circumstances to be absolutely perfect
SARA JAMES: All this thinking and planning, Cass says, has contributed to a 60 percent leap in the number of donors in australia in the past four years. But she says much remains to be done.
YAEL CASS: We are not resting on our laurels because we know we can continue to change the way we manage our donation practice in Australia and continue to provide more transplants for people who are waiting
At Westmead hospital, the clinic is humming. Dr. Jeremy Chapman is a renal physician here and the past president of the International Transplantation Society.
DR. JEREMY CHAPMAN: This January we did in a period of three weeks one quarter of the whole year’s transplants. On a daily basis we are busier. It’s quite clear you saw the clinic today, it’s chaos. That’s great. Love chaos. Organized chaos.
SARA JAMES: If you were to give Australia a badge, what would you give it?
DR. JEREMY CHAPMAN: I think we’d have to have the badge for most improved in the last couple of years.
SARA JAMES: And Damien Blumire would agree. He’s indulging in what was for so long a forbidden pleasure.
DAMIEN BLUMIRE: It’s fantastic. It’s something I’ve dreamed about for 10 years!
SARA JAMES: Just days ago, Damien received a call at 5:10 am — a kidney from a deceased donor was a perfect match. He is grateful to the family of that donor – and conscious of a debt he will do his best to repay.
DAMIEN BLUMIRE: As much as i’ve benefited from you know the sadness in their life — it it’s just — I mean I’m only 40 years of age!
So at 40 years old I’ve got so many years ahead of me and I’ve sort of been treading water for the last decade the last quarter of my life this has given me the opportunity to get over that hurdle and just go and grab life by the horns and ride it as hard as I can
SARA JAMES: And he’s only just beginning to picture all the things he can and will do … in his new life.