A plan for transplant patients: Look south

By Lisa Priest

February 25, 2006

Having languished on a transplant waiting list for more than four years with no guarantee he would ever obtain a kidney in Canada, Glen Wood put $40,000 (U.S.) down at an American hospital and waited for the telephone to ring.

Last month, in the middle of the night, he received the call he'd been waiting for -- the organ of a dead 49-year-old American was his.

The 75-year-old hastily threw together a bag of clothes, then he and two others made the early dawn drive from his home north of Toronto to the Buffalo-based Erie County Medical Center Corp.

On Jan. 16, surgeons transplanted the kidney into him.

"They're as excited as you are that you are going to get a kidney," Mr. Wood, a former co-ordinator of music for the North York Board of Education, recalled in an interview from his Richmond Hill home.

By getting the transplant, he was able to end his three-times-a-week dialysis sessions. He also struck himself off an Ontario waiting list that may never have provided him the organ he so desperately needed.

This is because Mr. Wood discovered the best-kept secret in the transplant community: Canadians can obtain organs in the United States quicker than they can here, where queues can last many years and hundreds die waiting.

At a time when Canadians are soliciting organs over the Internet or travelling half a world away to pay live donors for kidneys, Mr. Wood found that the answer was as simple as crossing the U.S. border.

Unlike Canada's organ transplant system, which does not allow foreigners on its waiting lists, the United Network for Organ Sharing, or UNOS, allows U.S. hospitals to perform up to 5 per cent of all types of organ transplants on "non-resident aliens."

This policy allows moneyed Canadians to hedge their transplant bets. By putting themselves on two waiting lists -- one in their home province and another in a U.S. hospital -- they improve their odds of receiving an organ.

So long as Canadians can meet the hospital's financial requirements -- paying a comparable rate to that of a U.S. citizen or insurer -- the place they occupy in the organ queue is no different than that of an American.

No figures are available on how many Canadians have received transplants at U.S. hospitals. However, figures from UNOS, which administers the only organ procurement and transplantation network in the United States, show that 3,365 non-resident aliens obtained organs from Jan. 1, 1988, to Oct. 31, 2005.

Several Canadians have gone to the Miami-based Jackson Memorial Hospital to get transplants, mostly kidneys, its spokeswoman, Lorraine Nelson, confirmed. She refused to provide further details on the associated costs and the length of time these Canadians wait for organs.

In Canada, the scarcity of organs is exacerbated by the lack of a national system. Since most donor kidneys stay within provincial boundaries, highly sensitized patients who are incredibly difficult to match due to antibodies they have against donor tissue, can linger on a list for up to two decades.

Manitoba's solution to this problem has been to send these hard-to-match patients to Minnesota to receive donor kidneys.

"Until we have a Canadian system, there is no other option for individuals in Manitoba," said Peter Nickerson, a transplant nephrologist at Winnipeg's Health Sciences Centre.

This particular subset of patients, most of whom developed antibodies during pregnancy or childbirth, can linger in the organ queue for 16 to 20 years, he said. That compares against other patients without those sensitivities who wait three to four years in Manitoba.

"Over all, the real solution is for Canada to develop its own strategy," he said.

Dr. Nickerson stressed that the Minnesota solution is only for those highly sensitized Manitobans requiring kidneys and it would not be used for patients like Mr. Wood, who had no known compatibility problems.

Whatever the case, many may think it odd that Canadians are dealing with the scarcity of organs by travelling to the United States, a country experiencing the same dire need.

As of yesterday afternoon, 91,159 patients were waiting for U.S. organs, including 65,450 who need kidneys. In 2004, some 6,737 patients died while waiting for an organ transplant in the United States. Of those, 3,981 were awaiting kidneys, said Annie Moore, UNOS spokeswoman.

In a telephone interview from Richmond VA, Ms. Moore said organ donation is a humanitarian act, and since not all countries offer transplants, the program gives patients a chance they would never otherwise have.

She said it is also a way to give back to Canadians on behalf of Americans who have received transplants from Canadian organ donors who died in the United States.

Ms. Moore said figures show that 24 Canadians who died in the United States between January of 2000 and October of 2005 were organ donors.

"Some have theorized that if the United States wishes to use these organs for transplantation, probably for U.S. citizens, it would be hypocritical to deny transplantation to foreign citizens," she wrote in an e-mail.

Arthur Caplan, chairman of the department of medical ethics at the University of Pennsylvania and director of its centre of bioethics, said that while most Americans have no idea foreigners are in the transplant pool, they wouldn't be offended to learn that some of them are Canadians.

"On the whole, I suspect that Americans would like to believe that American organs go to Americans first and that Canadian organs go to Canadians first," Dr. Caplan said in a telephone interview from Philadelphia. "When that principle is undercut, I do think it raises a moral red flag, but it isn't undercut very often, and when it's undercut for a Canadian, it wouldn't raise the flag very high."

The relationship of sharing organs between the two countries is a robust one, with Canadians providing organs it can't match in Canada to Americans. Typically hearts and lungs, such organs must be transplanted in a matter of hours.

Some 38 organs that could not match a suitable patient in Canada were sent to the United States, according to figures from 1999 to 2005, said Margaret Keresteci, manager of clinical registries for the Canadian Institute for Health Information.

During the same period, Canadians received some 213 organs from Americans, more than half of which were hearts. Only eight were kidneys, she said.

For Mr. Wood, whose kidneys were ravaged by polycystic disease, a genetic disorder characterized by the growth of fluid-filled cysts, he felt he had to seek other transplant options.

He asked the Ontario government to finance the out-of-country transplant, but it refused. He appealed to the province's Health Services Appeal and Review Board, arguing that he would suffer irreversible tissue damage or die should he not receive a kidney.

That board dismissed his appeal in January of 2003. At the time, it said it could not make a finding that the delay in obtaining a transplant for Mr. Wood would be avoided by travelling to Buffalo.

"If the kidney were to become available in Buffalo before it becomes available in Ontario, it may be that another panel of the Board would be satisfied that there is a requisite delay in this case," the decision said.

Perry Brodkin, a health lawyer in private practice who used to represent the Ontario Health Insurance Plan, said that for Mr. Wood's appeal to succeed, he would have to prove that he would have died or had irreversible tissue damage between the time of his transplant, in January of 2006, and when he would have obtained one in Ontario.

Mr. Wood has launched another appeal with the same board, hoping he can not only recoup his transplant costs, but open the door for others to get financing for transplants in the United States. Obtaining a donor organ from a deceased American is hardly different, he said, from cancer patients gaining access to timely treatment outside Canada.

"I thought that every year that passed without getting one, I was less likely to get one," Mr. Wood said. "If I arrive at the top of the list just as a 23-year-old or 16-year-old does, guess who gets it? If I had to wait for another five years, I would be 80."

In a prepared statement, the Erie County Medical Center Corporation said that Mr. Wood was chosen as its first Canadian patient because he was an acceptable transplant candidate and due to his advanced age and the long wait he faced, it was "determined that, in Canada, Mr. Wood would have essentially been excluded from such a procedure."

Canadian transplant experts insist that age does not exclude patients from obtaining organs, although they say older patients may have more complicating health issues that could push them off the list. Still, they insist, a healthy 80-year-old is a suitable transplant candidate.

Whatever the case, patients queuing for organs still face these sobering facts: 3,974 patients last year were waiting for all types of transplants in Canada, and 275 patients died waiting in 2005, Ms. Keresteci said.

And waiting times can vary dramatically between institutions as well as provinces.

The London Health Sciences Centre has average waiting periods for kidney transplants of 1,054 days, while St. Joseph's Hospital in Hamilton is almost double that at 2,053 days. St. Michael's Hospital in Toronto, where Mr. Wood received treatment, has a waiting time of some 1,880 days, said Frank Markel, president and chief executive officer of Trillium Gift of Life Network.Jeffrey Zaltzman, director of the renal-transplant program at St. Michael's Hospital, said he sees nothing wrong with patients, who would otherwise languish on waiting lists, travelling to the United States for organs. Some patients, he pointed out, can wait up to nine years for a transplant in Toronto.

"My own view is that if patients need help, they should get it," Dr. Zaltzman said. "If you're in that situation, I don't see why they shouldn't have the opportunity to go somewhere else. It's very heartbreaking to see these people."

Mr. Wood was told by the Buffalo-based hospital that the wait would range from 10 months to 1½ years.

When he put down the full fee of $40,000 (U.S.) in March of 2003, it covered his surgery, anesthesia, hospital stay, two follow-up visits and an eight-day supply of anti-rejection drugs and other medications that would last until a visit with a Canadian kidney specialist. The organ, of course, was free.

After two false starts, it was just two months shy of three years before he got the actual transplant.

"If I hadn't gotten treatment when I did, there was a possibility of getting worse and worse," he said.

Although he tried to help himself the best way he knew how, at least one ethicist doesn't agree with it.

"It's a type of transplant tourism. It smacks as a bit of that," John Dossetor, a retired kidney specialist who sits on the Canadian Council for Donation and Transplantation, said in a telephone interview from Ottawa. "Of course, transplant tourism refers to live donors of kidneys. But it's still a question of getting preferential treatment because of money."

Others suggested that because the two countries have a relationship of sharing organs, it is ethically acceptable.

Copyright © 2006 Bell Globemedia Publishing Inc.

This article posted March 12, 2006.