Vital signs weak for transplants

Harris promise to double rates flops

Political leadership lacking say critics

Valerie Hauch

Staff Reporter

George Marcello admits he is obsessed.

Driving on a highway through Montreal, the 49-year-old Toronto man modestly describes himself on a cellphone as passionate and vocal about organ and tissue donations.

An activist, Marcello is on his way to meet 14-year-old Kristopher Knowles and his father to take the ferry to St. John's where, last week, they began the eastern leg of Kristopher's Wish.

Knowles needs a liver transplant and is walking in communities across Canada to raise awareness about the acute need for organ and tissue donations. Marcello, who met and inspired Knowles in Sarnia while completing his own cross-country walk in 2000, is organizing and staging the events.

Marcello also walked across Ontario and started off his public campaign by walking from Ottawa to Toronto two years after he received a most precious gift.

In 1995, three years after being diagnosed with terminal liver disease, his liver failed. He was rushed to hospital where he was given two days to live.

Miraculously, someone donated a matching organ during that time. It saved his life. "Right after I got out of the hospital, I was obsessed with trying to make a change. I haven't looked back," Marcello said.

The former fitness promoter claims it was his walk and unrelenting correspondence that led to then-premier Mike Harris's bold announcement in the 1999 throne speech that Ontario would double organ donation rates over five years.

"We thought we were off to a great, great first step," Marcello said. "Now looking back at everything, nothing has changed."

In 1999, 642 organ transplants were performed in Ontario, just below the 661 completed last year.

The organ donor rate has barely moved -- from 12.3 donors per million people in 1999 to 12.5 at the end of 2003, according to the Trillium Gift of Life Network, the provincial agency responsible for managing organ donations that was born out of Harris's announcement.

Ontario, the most populous province in the country, has one of the lowest deceased donor rates in Canada, just ahead of B.C. and Manitoba, according to statistics compiled by the Canadian Institute for Health Information. Ontario's total number of donors has remained around 400 for the past five years, with a high of 421 in 2000-01. Donors can donate more than one organ for transplantation.

Canada as a country ranks low when it comes to organ donations, with a rate of 13.5 donations per million that's been stagnant for the past 10 years. Five patients died in Canada every week last year while waiting for a transplant, according to the institute.

Marcello likens the 4,000 Canadians, and more than 1,800 Ontarians, waiting for organ transplants to people stuck in a burning building, one where the public and officials can see a safe exit but fail to lead them through.

"I'm doing this alone and I shouldn't have to do this alone," Marcello said.

In Ontario, the Trillium network didn't get up and running until April 2002 and, in June of this year, the fledgling institution took a hit when Darwin Kealey, the network's founding president and chief executive, resigned. A replacement is expected to be named this fall.

"Can we do better? Absolutely. Will we do better? Absolutely. But it takes time ... we've really just been at it over a year," said Sue Wilson, Trillium's acting CEO.

She points out that there was a significant time lag between the "double in five years" promise and when the Trillium group actually got going.

But Marcello believes it'll take more than time for Ontario to get back on the track Harris promised.

"I'm not questioning the premier's intention. What's happened since is that it slowly left his hand and became a bureaucratic snowball," said Marcello.

"We were aiming for gold and somehow the desire and passion to get the gold got dropped."

Ontario Health Minister George Smitherman says Kristopher Knowles, Marcello's protégé, is "one of my health-care heroes," a Grade 8 student with the strength to inspire.

Yet the health minister acknowledges that it takes more than walkathons to deliver results on transplant rates.

The Liberal government has now "tied funding to reducing wait time in key areas -- including organ transplants," Smitherman said, and set a target of 425 extra transplants a year by 2007/08.

And through the 2004-05 hospital allocation, the province has provided an additional $8.8 million for 152 additional organ transplants, he said.

Marcello said the current system where the family can deny a dying member's wish to donate their organs needs to be changed to similar ones that exist in Spain, Austria and Belgium where consent to donate the organs is presumed unless an opt-out clause is exercised.

According to Spain's National Organization of Transplants, Spain is a world leader in organ transplantation with a 33.7-per-million donation rate in 2002 -- compared to Canada's 13.5 -- followed by Latvia with 24.4, Austria with 24.3 and Belgium with 21.7.

`I think we've reached the saturation point with the education campaign ... we need to talk about the nature of bodily remains. They (organs) are quite frankly surplus' Peter Kormos, NDP MPP

The U.S. rate is 21.5 -- high for a country with a system similar to Canada's, requiring consent on donor cards along with relatives' consent, but understandable given the level of leadership and awareness in some states. Wisconsin passed a bill this year that gives organ donors tax deductions for expenses incurred. A similar bill is being proposed in 14 other states.

Presumed consent is something the Ontario government should consider, says New Democrat Peter Kormos (Niagara Centre). He intends to bring forward this fall a private member's bill that will focus on presumed consent for organ donation.

He said it will include an option to "opt out'' for religious or personal reasons, and noted parents would continue to have jurisdiction over the bodies of their children.

Although private member's bills rarely become law, Kormos said he's "very serious about getting it to committee" and making sure it gets attention and debate.

"It seems to me that the opting-in program doesn't work," he said. "I think we've reached the saturation point with the education campaign ... we need to talk about the nature of bodily remains. They (organs) are quite frankly surplus."

Dr. Gary Levy, medical director of the transplantation program at the University Health Network and University of Toronto feels Spain's "presumed consent" program is just part of the solution.

"The simple reality is they're doing much better than us,'' Levy said. It helps enormously that doctors and nurses work for Spain's procurement agency as well as the fact that the country's political leaders and even its king have made it a point to speak in favour of organ donation, he said.

Here in Canada such leadership is lacking, he says, "from top to bottom ... I don't see the same level of commitment here. I haven't heard Paul Martin talk about this ... or Jean Chrétien ever address it."

For example, the Trillium Gift of Life Act, passed toward the end of 2000, has a section making it mandatory for all Ontario hospitals to notify an organ donation network when any potential donor dies. But that part of the law has not yet been proclaimed.

Wilson said this is expected to happen by late spring or summer of 2005. Although many hospitals already notify Trillium about deaths involving possible donors, "there is no hospital right now that contacts us about every death," said Wilson.

Marcello said the government also needs to be more creative and imaginative to raise awareness.

"You need a really good marketing plan so that this issue would become more popular," said Marcello. "I've gone around the province and nobody's heard about Trillium."

Wilson said the priority now is awareness and education within hospitals, with the public and especially in multicultural communities.

Other action to make donation easier would help, such as re-establishing an organ-donor check-off on licences. When the drivers licence system went to plastic cards, a detachable paper organ donation slip disappeared. It could be reinstated on the plastic cards as a permission code, Wilson says.

"The other thing that's stopping us from achieving our goals is misinformation -- some people feel they are too old, or that their religion won't let them donate. There is a lack of awareness and knowledge in the community."

Still, there are pockets of hope.

The region of London has a rate of 25.6 donors per million, the highest in Ontario.

Michael Bloch, transplant donor co-ordinator at London Health Sciences Centre, attributes this to the hospital's long-standing reputation with transplants and the fact that the hospital has had a transplant co-ordinator since opening in 1972.

The London program also has a high-profile working relationship with high school students, and even a popular transplant-themed T-shirt line with messages like "Life -- pass it on."

Such public awareness measures are also on the horizon for Trillium, said Wilson.

"Our role at Trillium, in addition to getting people to sign (donor) cards in the first place, is supporting hospital staff in identifying those patients who might be eligible for organ donation and providing families with information so they can make an informed decision at the time,'' said Wilson.

That's where donor co-ordinators come in.

Trillium currently has 12 donor co-ordinators at Ontario "trauma centre'' hospitals (including five in the GTA) who have all had specialized training and who work directly with hospital medical staff in emergency and critical care areas "educating them and making them aware of people who could be potential donors."

They also support staff in other areas where there could be potential for tissue donation. The donor co-ordinators also work directly with families of possible donors, offering any support that's necessary.

Wilson is hopeful about getting the go-ahead to hire another eight organ donation co-ordinators to work in more hospitals this fall.

Marcello is hopeful the new CEO will take charge.

"Deep down, they know they aren't getting it right," he said. "They need a general that will set the tone, lead the charge and address the issues and get the job done."

With files from Jon Willing/GUELPH MERCURY.

Copyright © 2004 Toronto Star Newspapers

This article posted November 1, 2004.