Organ donor registry in Ontario, Canada choked by red tape

Every U.S. state has an online organ donor registry (or has approved it's activation) but the only Canadian province to have one is British Columbia. I've been advocating for an on-line registry in Ontario for several years now only to be met with frustration and excuses such as it would cost too much or privacy issues had to be overcome before a registry could be implemented. I've told the powers that be that young people are not going to go on-line, download a form, print it out, complete the form and mail it in via snail mail. I pointed out they were missing a wonderful opportunity with young people with the Recycleme.org program by not offering a chance to register to be an organ donor on-line. All to no avail. I'm glad the Toronto Star has brought attention to the situation. Let's hope that someday soon Ontario will do something positive to increase the rate of organ donation in this electronic age.

By Barbara Turnbull, Living Reporter The Toronto Star

Linda Hogarth believes it is her duty to register as an organ and tissue donor. It’s certainly fortunate the 70-year-old former saleswoman is committed, because not everyone would have had the time and patience to endure the hassle she experienced.

Her odyssey began when she visited www.giftoflife.on.ca, the website of Trillium Gift Of Life, the agency that coordinates organ and tissue transplants in Ontario. Hogarth printed out the donor form, filled it out, signed it, and mailed it.

Then, she waited six months for a sticker to affix to her red-and-white health card. When none came, she contacted Trillium and was told there was a bottleneck processing forms in Kingston, where the donor registry is maintained.

“I know that the government moves slowly in all its branches, but this is nuts,” Hogarth told the Star.

Hogarth tried again to get a donor sticker, making several trips to Service Ontario offices, where she dealt with three employees before getting the sticker.

“I’m outraged by it,” Hogarth says. She is not alone. A year-long look into Ontario’s organ-and-tissue donation system shows that provincial red tape and jurisdictional overlap is impeding efforts to get Ontarians listed on the organ and tissue registry.

One major flaw in the system: Ontario’s old red-and-white health cards.

Hogarth is among almost 4 million Ontario residents — about 35 per cent of the population over 16 — who kept their red-and-white cards when the province introduced photo identification health cards in 1995, the same year a database was created to help match willing donors and the 1,500 children and adults awaiting transplants at any given time.

But all of these 4 million may never be asked for their consent to be organ donors — a fact reflected by the provice’s low sign-on rate.

Twenty-seven per cent of people with the photo health cards in Ontario (roughly 1.9 million of 7.2 million people over 16) have joined the organ and tissue donor registry. In contrast, just 0.4 per cent of red-and-white cardholders (15,000 of almost 4 million) are registered.

Experts say creating an online donor and tissue registry would reduce the time and effort required to join, but the province has declined to do so despite agreement from several government departments that a web registry is the way to go.

Consider the American experience. By the end of 2009, 37.1 per cent adult of U.S. residents were enrolled in state donor registries, all but three of them online. Nationally, Canada lags behind eight other countries.

“For a social democracy, it’s not a good track record,” says Dr. Gary Levy, head of the multi-organ transplant program at Toronto General Hospital. “It’s not the patients’ fault; it’s the system’s fault. There’s a logjam, there’s inertia.”

Levy is well-placed to make that judgment. He led the Organ and Tissue Transplantation Wait Times Expert Panel, which met in 2008 and 2009 and whose 26 recommendations have been examined by Ontario’s Auditor General Jim McCarter. Levy says he expects McCarter will embrace the panel’s recommendations when he makes his annual report today. The report is expected to address the old health cards and online registry issues, as well as wait times and the dearth of tissue donation from Ontarians.

The low sign-up rate is a multi-faceted problem Levy says, with some obvious fixes. For starters, “Get rid of the red and white cards immediately.” There is irony here: Levy himself hasn’t upgraded to the new photo health card, he admits, “And I’m the head of the transplant program.”

The approach to registration, Levy says, is another major impediment. Service Ontario staff are trained to renew driver’s licences and health cards. The organ and donor registry is not their primary mandate. “You’ve got the wrong people sitting behind the counter,” he says. “They haven’t been trained properly, they are no necessarily passionate about it, they may not understand what we are doing, there may be cultural issues.”

Last year, Trillium spent $600,000 on Recycle Me a campaign aimed at people ages 15 to 25 that involved 12 weeks of online banner ads, transit ads and a social-media drive. It has been judged a success by Trillium, generating 60 stories in various media, receiving 118,000 unique hits and 3,500 members on the Facebook page.

But Frank Markel, president of Trillium Gift of Life, doesn’t know how many of those 118,000 visitors registered to be organ donors. There was no way to register on the site — at the very moment Trillium held a potential donor’s attention.

“Trillium’s position for several years now, publicly, privately, with government, has been that we need an online registry,” Markel agrees. “The Ministry (of Health) agrees with us intellectually about that.”

He should talk to Penny Clarke-Richardson of B.C. Transplant. She says targeting a younger audience is what led her agency to establish an online registry nearly three years ago. Younger people, she says, just won’t print and mail forms. Since the online addition in June 2008, nearly 18 per cent (19,679) of new registrations in British Columbia have been made online, “and we have caught the demographic of the 19- to 40-year-old we were aiming for,” she says.

The systemic intertia Levy blames for the donor logjam stems in part from the fact that three groups have their fingers in the pie: two provincial ministries and the Trillium agency.

The Ministry of Health and Long-term Care takes the lead on organ donation and last summer put together a working group to plan and implement an online registry, an initiative that harks back to a recommendation in 2006 by the Citizens Panel to Increase Organ Donation. Meanwhile, the Ministry of Government Services is responsible for issuing health cards and drivers’ licenses.

Even Levy’s panel of experts found it difficult to determine where specific recommendations should be directed.

“In fairness to the public, we can make it more convenient,” Health Minister Deb Matthews told the Star.

Matthews suggested families get themselves and friends registered for Christmas this year. “Have a party and you can’t come in unless you’ve shown (proof of registration),” she suggests.

“I can’t imagine a better gift.”

HOW TO REGISTER

There are currently two ways to register as a donor in Ontario: Like Hogarth did, visit www.giftoflife.on.ca and download the form; or at a ServiceOntario office.

Each time a new health card is acquired or renewed at a ServiceOntario office, the employee is supposed to ask whether the client is aware that he or she can register there to be a donor and if they would like to give their consent. Though driver’s licenses are issued by the same employees at the same offices, organ donation is not raised at the time of renewal. A donor form, along with self-addressed postage-paid envelope, is mailed to people with their new driver’s license.

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario at Trillium Gift of Life Network NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org 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 or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You