Social Policy in Ontario

Ontario creates online donor registry

Posted on June 13, 2011 in Health Delivery System

Source: Toronto Star — Authors: Theresa Boyle

TheStar.com – healthzone.ca/health/article
June 13, 2011.   Theresa Boyle,  Health Reporter

After five years and three official recommendations, the provincial government will allow Ontarians to register as organ donors online.

The website, beadonor.ca, is up and running, though the government plans to announce it Tuesday.

“It’s very good news. They are now speaking the (computer-savvy) language of a lot of people, particularly younger people,” said Marc Quinet whose 14-year-old son, Thomas, requires a double-lung transplant.

More than 1,500 Ontario residents are on the wait list for organ and tissue donations, and 399 transplants were done so far this year. In the Greater Toronto Area, 1,014 are on the list and 245 transplants have been done this year.

The statistics vary across the province with 44 per cent of people in London and Sudbury registered to donate, compared to only 13 per cent in Toronto. Province-wide, fewer than 20 per cent of residents have registered to donate.

The creation of the online registry comes after extensive coverage by the Star about the shortage of donors and the plight faced by those waiting for organs and tissue.

The provincial auditor recommended creation of an online registry in his annual report last year, as did an expert panel on transplant wait times in 2009 and a consultant to Trillium Gift of Life Network in 2006.

Until now, willing donors had to register their consent in person at a ServiceOntario Centre or by downloading, completing and mailing a consent form. Registration adds a donor’s name to the health ministry’s database and is required even if an individual has signed a donor card.

By making it easier for people to consent, the province hopes to increase the number of donors.

The registry is the creation of the Trillium Gift of Life Network, as well as the health and government services ministries.

Thomas Quinet, who needs a new set of lungs, has cystic fibrosis, a genetic disease that causes thick mucus to build up on the lungs, gradually destroying them.

Monday marked a sad anniversary for the family. Exactly a year before, they moved to Toronto from Ottawa to be close to the Hospital for Sick Children where the transplant will be performed. They had hoped the transplant would have been done by now.

Making the most of their situation, the family marked the day with an excursion to Niagara Falls and the Buffalo Zoo. They can’t venture more than two hours from Toronto lest they get the call that organs have become available.

“Every time there is a phone call late at night or early in the morning you think it’s the (transplant) call,” Thomas said.

His parents left their jobs behind so they can be by his side. Meanwhile, they continue to pay the mortgage for their Ottawa home.

Thomas said he misses Ottawa and his friends there.

“You don’t know when you are going to come back home,” he said.

This would be Thomas’s second double-lung transplant. He had his first in 2007 but developed bronchiolitis obliterans syndrome, a common cause of rejection. Second transplants required because of this type of rejection have success rates approaching that of first-time transplants.

Janice Morrison, 58, of Oshawa, is also thrilled to hear about the registry. She has suffered from diabetes for more than 50 years and has been waiting for a kidney and pancreas transplant for nine months.

“The anxiety of waiting is gut wrenching. You just hope you are well enough to stay at the standard they need you at to qualify for the operation,” she said.

“We are living in the computer age, so anything they can do to make it easier to register is good.”

British Columbia already has an online registry and Manitoba has plans to create one.

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Tags: Health, standard of living

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