Eugene Melnyk, Wagner twins raise crucial awareness for organ donation

Advocates say that high-profile transplant cases, like the Wagner twins or Ottawa Senators owner Eugene Melnyk, are a boost to organ donations, raising awareness and potentially encouraging others to become donors.

High-profile cases bring a bump in organ donor registrations

Critics have slammed Ottawa Senators owner Eugene Melnyk's appeal for a liver donor, saying it amounts to queue jumping. But advocates say the move helps -- not hurts -- others waiting for a donor. (File/Aaron Harris/Canadian Press)

The story of Eugene Melnyk's live liver transplant has drawn some criticism over the past week from those who accuse the Ottawa Senators owner of using his status to get ahead of others in need.

But advocates say that high-profile cases like Melnyk in fact boost organ donations, raising awareness and potentially encouraging others to become donors.

"Every time there has been one of these public appeals, it brings greater attention to the need for organ donors, and we then hope that drives more people to register as organ donors," says Melanie Kearns, a spokeswoman for the Canadian Liver Foundation.

Twins Binh Wagner, left, and Phuoc have Alagille syndrome which affects the function of their livers. Binh received a liver from an anonymous donor after a public appeal. (Wagner family/Canadian Press)

More than 500 volunteers stepped forward after Melnyk, who is now recovering in Toronto General Hospital, issued a public call for a live donor. Twenty-six of those who weren't selected said they wanted to continue the live donation process for others in need of a liver transplant.

"So that's one of the positive outcomes from this. It's sort of a spillover or trickle-down effect," says Kearns. She adds that Melnyk's appeal isn't queue-jumping, as some have claimed, since there is no wait list for live organ donations — only for organs from deceased donors.

There have been other, similarly high-profile cases recently that have also garnered a media attention and a rash of new potential donors.

In April, three-year-old Binh Wagner from Kingston, Ont., received a liver transplant from an anonymous donor two months after her twin sister, Phuoc, underwent the same surgery, having received part of her father's liver.

Helene Campbell, a teen from Ottawa, raised awareness for organ donations on the international stage after documenting her need for new lungs on social media.

Winnipeg girl Allexis Siebrecht, 11, is currently still seeking a new liver after a potential donor turned out not to be a match.

"We do see an immediate uptick in registrations every time organ and tissue donation and transplant is in the news, or when a high-profile campaign is launched," says Ronnie Gavsie, president and CEO of Ontario's Trillium Gift of Life Network.

She adds that the week Campbell appeared on The Ellen Show, the organization saw over 3,000 online registrations through BeADonor.ca, a website where Ontario residents can sign up to donate their organs when they no longer need them.

Canada behind in organ donor registration rates

While the number of registered organ donors has risen slightly over the last two years, only 19 per cent of adults in Canada are currently signed up.

"We're one of the poorest in the world" when it comes to organ donor registration rates, says James Breckenridge, president and CEO of the Canadian Transplant Society.

But he adds that every time organ donation makes the headlines, he sees a spike in traffic to the organization's website, which he hopes means an increase in awareness.

Breckenridge blames our low donor rates to "a lack of understanding and a lot of misconceptions with organ donations."

He says many people think that becoming a donor means their organs can be taken before they die (not true) or that someone's religion or age could make them ineligible to donate (also not true).

Even people who have particular diseases or disorders are still often qualified to donate their organs.

'It's an unbelievable gift'

The recent media coverage around liver donations has also managed to raise public awareness to the fact that it's possible to be a living donor.

"That's not something that most people would have known or ever considered until the story of the Wagner girl and the story of Eugene Melnyk, so that may lead to more people considering becoming a living donor," says Kearns.

It took someone high-profile to bring it into the news and let people know there is a need — there is such a need- Liver recipient Theresa Whalen-Witjes

Theresa Whalen-Witjes, of Kingston, Ont., knows first-hand the importance of live organ donation — she was in liver failure for two years and put on the donor wait list.

According to the most recent data from Canadian Institute for Health Information, in 2013 there were 498 people on the wait list for a liver, of which 86 died before receiving one. (509 transplants were actually performed that same year.)

Eventually, Whalen-Witjes' friend Christine Kyle stepped forward and offered to give her a portion of her liver.

"It's an unbelievable gift and there is absolutely no way for me to say 'thank you,'" says Whalen-Witjes, who is now a member of the Transplant Advocacy Association to help others through the transplant process.

Theresa Whalen-Witjes, right, and her friend and liver donor, Christine Kyle, attend a Celebration of Life event. (Theresa Whalen-Witjes)

Whalen-Witjes says that people in need of a new liver or kidney are lucky because they are able to receive organs from living donors, as opposed to hearts and lungs, which can only come from deceased donors and where a timely transplant is often the issue.

"We're so fortunate in that way," she says.

As for those who slam Melnyk or the Wagner twins for gaining an unfair advantage through publicity, Whalen-Witjes says those critics make her angry.

"It took someone high-profile to bring it into the news and let people know there is a need — there is such a need," she says. "It's not something people want to think about, and it's not something everyone is cut out to do. But if they're aware of the need, people may step forward."

Becoming a donor

Most people who decide to become live organ donors do so to help a family member, but you can also choose to donate to someone on the wait list. In fact, the proportion of living donors who are unrelated to the recipient has increased from 27 per cent in 2004 to 44 per cent in 2013, according to the Canadian Institute of Health Information (this figure also includes spouses).

After submitting an application, potential donors undergo a battery of tests, from cat scans to blood tests.

Volunteers are also interviewed to assess their mental health. "The really want to know why somebody wants to donate and make sure it's not because of some expectation of reward down the road," says Kearns of the Canadian Liver Foundation.

If there's a match, the donor will undergo surgery to remove up to 70 per cent of their liver, which regenerates to its original size in about six to 12 weeks. Recovery time for the surgery is about three months assuming there are no complications. "It's an incredible process, but it is major surgery for the donor," says Kearns.

Canadians who prefer to donate their organs after they die can register online.

"There was a time where the only way to register was by making that decision when you renewed your driver's license," says Kearns. "But now in Ontario, there's online registration, and in a number of provinces across Canada, it's now possible to do that online — so it makes it as easy as possible for people."

To find out where to register in your province, visit the Canadian Transplant Society website.

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