Thursday, March 19, 2009

Canadian Lung recipient supports bill to compensate living donors

Cornwall native breathes life into bill


Alison Wilson is breathing easier, and wants organ donors to have the same liberty.

The 29-year-old Cornwall (Ontario) native, who turns 30 next month, recently underwent a double-lung transplant to battle cystic fibrosis, and is now supporting an Ontario bill tabled earlier this month to increase unpaid leave for people who donate a kidney, liver, lung, pancreas or small bowel.

"Before I was like a deflated hot-air balloon," Wilson said. "(My lungs) took forever to expand. But when the balloon's full of gas and rising, that's what it feels like now. The sky's the limit."

Earlier this month, local MPP Jim Brownell raised Wilson's struggle in the Legislature during the bill's discussion and has visited her while she was in Toronto hospitals before and after her Feb. 16 surgery.

"She is the kindest, most generous, and brave young woman," Brownell told the Standard-Freeholder. "I admire her spirit for life, and I think this comes from her battle with cystic fibrosis, and her desire to educate others."

Wilson was diagnosed with the disease at just two weeks of age. Her husband Derek Proulx is a former student of Brownell's.

Between 1996 and 2005, the number of adult lung transplants increased from 76 to 145, according to the Canadian Institute for Health Information.

There have been 20 lung transplants in Ontario so far in 2009.

The goal of the new bill is to increase the number of people willing to donate organs and to reduce the lengthy wait lists potential recipients must endure, according to Labor Minister Peter Fonseca.

"Job-protected leave for living organ donors would provide support for those compassionate Ontarians who are giving the gift of life to others," said Fonseca as he tabled the bill.

"These are our friends and neighbors, our mothers and fathers and, all too often, our sons and daughters."

The bill could increase unpaid leave up to 13 weeks.

Patients could get an additional 13 weeks if a doctor felt they needed more time to recover.

Some 1,700 people in the province are currently waiting for an organ to be donated. Many have also died waiting.

Wilson was able to jump the queue of about 40 stage two patients for her surgery because the lungs were such a perfect match. She had only been waiting for about 45 days before a nurse poked her head into Wilson's room and announced, "We've got lungs!"

The lungs came from a young woman who died, Wilson said. She's not able to know much more than that.

"We can send thank you letters, but we can't say who we are," said Wilson, who plans to return to Cornwall after her three-month recovery period.

A double lung transplant usually takes about six to twelve hours to complete, but Wilson's took only five-and-a-half hours at Toronto General Hospital. The procedure is common for people with cystic fibrosis due to the bacterial colonization commonlyfoundwithinthepatients'lungs. If only one lung were transplanted, bacteria in the native lung could potentially infect the newly transplanted one.

The bill builds on the launch of the donor expense reimbursement program introduced in Ontario last year, following a pilot project in B. C. Donors are eligible for up to $5,500 in reimbursements for expenses such as meals, accommodations and travel through the government run Trillium Gift of Life Network.

Most notably, donors can also apply for a loss of income subsidy after surgery. It's up to a maximum of $3,200 and $400 per week, or 55 per cent of net earnings, depending on which is less.

According to a Gift of Life representative, about 200 people have applied for reimbursement since the option was introduced in April of 2008.

The families of Ontario residents waiting for an organ can also receive financial aid if forced to relocate to be near a hospital that can provide the operation when an organ becomes available.

"Trillium has been great for us," Wilson said.


But the new bill to give donors more recovery time has its critics. NDP MPP Peter Kormos said the government can't produce one person who has been fired because they took time off work to donate an organ.

He said what is really needed is for the government to mandate informed consent, which would assume people are willing to donate their organs unless they expressly say otherwise.

Austria, Spain, Portugal, Italy, Belgium, Bulgaria, France, Luxembourg, Norway and Denmark are just a sample of countries with a presumed consent model for organ donations.

"If you don't sign an organ donor card, don't expect to get an organ if you need it," Wilson said, echoing the sentiment of an Australian politician fighting for increased donations down under.

Other critics have argued that in-kind rewards for organ donation -such as a down payment on a house, a contribution to a retirement fund, or lifetime health insurance -would prompt more people to donate organs.

But Brownell says that line of thinking misses the point.

"People go into this knowing and desiring to make a difference in a life," he said. "The greatest reward is that difference. So I don't think in-kind rewards are expected or required. One human being's generosity to another is the greatest reward."

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

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