RAGE AGAINST THE MACHINE

RAGE AGAINST THE MACHINE
While Jennifer Laferriere plugs into dialysis equipment every night, a Winnipeg doctor works to fix Canada's 'mediocre' organ donation system
By: Gregory Di Cresce
Posted: 1:00 AM |

There are days when Jennifer Laferriere wants to smash "The Machine."
It's not that she's ungrateful. She knows it keeps her alive -- it does the job her kidneys can't. But 15 years of dialysis is enough.
"Yesterday, hooking up the machine, I thought, 'I'm going to have to do this forever.' It's just depressing," says Laferriere, 41, a mother of two teenage daughters.
At age 15, after a routine doctor's visit, she learned she had a rare kidney disease. By age 26, four months after the birth of her second child, she started dialysis.
Her girls -- Kristie, 18, and Karlie, 15 -- can't remember a time when their mom didn't need to plug into a machine.
Three years ago, she got a bad infection, probably from her cat or her dog.
It forced her to switch from peritoneal dialysis to hemodialysis; although she can do the therapy at home, she is literally tethered to the dialysis machine all night long. It turned her bedroom into a lab, with The Machine towering beside the bed, a centrifuge on her desk and in her closet, under her colourful skirts and blouses, a reverse osmosis unit.
Around this time, Laferriere decided to put her name on the province's kidney transplant wait-list. She soon discovered she wasn't going to be an easy match.
"They told me that I was highly sensitized and that I matched only 10 per cent of the population," she says. A cousin, a friend, and her boyfriend each offered a kidney, but lab tests determined none of the organs was a match.
"I kinda knew that's how this would all be," says Laferriere, and laughs with a sort of sadness doused in resignation. "I always have to do what's different. It's just how it goes."
But Dr. Peter Nickerson, medical director of transplantation at Canadian Blood Services (CBS), says it isn't how it has to go. Nickerson is associate dean of research for the University of Manitoba's Faculty of Medicine and a key architect in the ongoing construction of a first-class national organ donation and transplantation system.
"We have a mediocre system today," Nickerson says from his sunny office in the CBS building on William Avenue. "I don't want to be mediocre. I don't think Canadians or Manitobans, if we want to talk locally, want mediocre either. Why shouldn't we be the best?"
This year, maybe as soon as late spring or early summer, CBS will unveil two new national organ registries: NOW and HSP. The National Organ Waitlist (NOW) registry will be a real-time list for those in urgent need of organs other than kidneys; the Highly Sensitized Patient (HSP) registry will be a nationwide matching service for hard-to-match kidney candidates like Laferriere. These electronic registries will replace an "archaic," patchy, and opaque paper-based system that depends on weekly updates, fax machines and urgent phone calls.
The aim of these national registries is to more efficiently and effectively compile and wed these specific types of organ recipients with a supersized donor pool, which, ideally, is fashioned from provincial intent-to-donate databases. Manitoba is expected to launch an online intended donors registry this month. Those who want their organs to be donated after death will be able to register online and make their wishes known. If organ donation becomes a possibility, medical staff can access the registry and share those wishes with the family.
If the CBS can get the kind of buy-in it anticipates from the Canadian public and provincial governments, which largely legislate heath-care policy in this country, then almost 1,000 more transplants could occur annually, says Nickerson.
In 2010, 2,153 transplants were performed in Canada from 1,017 people, a combination of living and deceased donors. Every year since 2001, approximately 2,000 people fail to obtain an organ transplant, the vast majority of whom need kidneys. And each year, somewhere between 230 and 250 people die waiting for an organ.
While it appears from the outside that the system is, at best, treading water, Nickerson insists a closer look reveals a different story. Perhaps the best evidence of this -- at least in his opinion and in the opinions of many others in the transplant community -- is the remarkable success of the first national registry the CBS initiated in 2009, the Living Donor Paired Exchange (LDPE) registry. It's both a donor and a recipient registry that optimizes the use of kidneys from living donors. Donors and recipients are registered in pairs and if a cross-matching pair is identified, a "swap" can be made. As of this February, 316 pairs have registered in the LDPE, 122 transplants have been done, and 27 more are scheduled. This registry has resulted in approximately an additional 50 transplants per year, or roughly a 10 per cent increase in living donation.
Those sorts of numbers were enough to convince most doubters in the medical community that the CBS is the right interprovincial vehicle to drive this system.
"I think that right now the transplant community that was hesitant and reluctant at the beginning is fully onside," says Dr. Sam Shemie, a critical care physician in Montreal and Nickerson's counterpart as the medical director of donation at the CBS. "Quebec took the approach, show us that it works and we'll join in, as opposed to join in and we'll make it work. But that's OK. It was overt and upfront. And the proof is in the actions. Quebec is wanting 'in' on all three registries."
Here in Manitoba, Nickerson, with the support of the Winnipeg Regional Health Authority and the province, has also quietly racked up a series of impressive successes. Besides making the lab work done here in matching organs the national standard, he's helped turn a province with the worst donation rate in the country, at five donors per million population in 2004-05, to 15.3 donors per million population in 2010. This brought a 76 per cent provincial bump in kidney transplants. To realize this gain cost the province approximately $4.3 million in program funding, but because so many more kidney transplants resulted, it actually saved $6.3 million in dialysis costs.
But such improvements, provincially and nationally, don't send Nickerson in search of a La-Z-Boy. He sees countries like the U.S., Spain and Italy scoring donation rates between 22 and 30 donors per million population and says: "Why not us?" Shemie shares his attitude and his sense of urgency, born, in part, from an understanding of the bedside pains of those who wait for an organ.
"There's a saying: How long you wait depends on which side of the bathroom door you're on," Shemie says. "Thus far, this process has all been typically Canadian, a gradual, incremental increase in co-ordination. But if I'm on the transplant waiting list, I'd be pretty frustrated by the lack of pace and urgency I'm seeing in certain places... This gradual inertia is related to the federal-provincial relationships and the division of heath-care responsibilities in our country."
Such constitutional concerns appear far removed from The Machine in Laferriere's bedroom, but there's no doubt what side of the "bathroom door" she's on. There's also no doubt what she hopes these new registries and a better national system amount to: that phone call.
"If that ever comes, I'm probably going to be crying and happy and scared," she says. "It'll just be crazy and the kids will be so excited and we'll just get through it. I'm just hoping that day comes."
gdicresce@yahoo.com
Republished from the Winnipeg Free Press print edition April 8, 2012

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