North fights for nocturnal home hemodialysis

North fights for nocturnal home hemodialysis

Richard St. Amour (left) and son Jessie at their home in Sudbury

Richard St. Amour is no quitter.A Sudbury contractor and self-proclaimed advocate for nocturnal home hemodialysis, St. Amour got a crash course in kidney disease and the various forms of dialysis when both his wife and son Jessie were diagnosed with hereditary nephritis.Jessie began in-centre dialysis at Sudbury Regional Hospital in late 2006, but the three to four hours, three times per week regimen wasn’t doing the trick. His creatinine levels were still sky high and his glomerular filtration rate was in the 13 per cent range typical for in-centre dialysis.

St. Amour began doing some research.

“At first, we looked at peritoneal dialysis. Then we found out about nocturnal home hemodialysis. We had a family meeting, discussed it thoroughly, considered all of the different pros and cons and came to the conclusion that nocturnal was his best option.”

Unfortunately, nocturnal home hemodialysis wasn’t offered in Sudbury or anywhere else in Northern Ontario. Chronic kidney disease patients in Toronto and other locations in southern Ontario could opt for it, but in Northern Ontario, the choice was between in-centre “adequate maintenance” and peritoneal dialysis, the latter requiring the surgical insertion of a catheter in the patient’s abdomen and the removal of waste products through regular daily exchanges of fluid.

The St. Amours decided against peritoneal dialysis, concluding that it was too intrusive for an active, 17-year-old high school kid.

Nocturnal home hemodialysis, performed six days per week for up to eight hours every night does a much better job cleaning the blood and frees patients to go about their lives with the least amount of disruption.


Pilot program

The province funded a pilot at Humber River Regional Hospital in Toronto in 1994 – 15 years ago – and still claims to be studying its effectiveness.  Over the years, a number of other hospitals in southern Ontario began offering nocturnal home hemodialysis by diverting funds from global budgets, but cash-strapped Sudbury Regional Hospital dug in its heels.

Jessie was finally referred to St. Michael’s Hospital in September 2007 and was five minutes away from an appointment with a nephrologist in Toronto when he received a phone call from London Health Sciences Centre informing him that a kidney was available for a transplant. Now 21 and studying carpentry at Cambrian College, Jessie is in excellent health.

Most parents may have just dropped the matter, but St. Amour is determined to continue battling for nocturnal home hemodialysis on behalf of other chronic kidney disease patients in Northern Ontario.

“What bothers me the most is that we finally have a home hemodialysis program starting in Sudbury, but we’re only going to allow patients to do three or fours hours a night, three times a week,” he complained. “It’s just like in-centre dialysis, so what’s the purpose of putting it in their homes? Sure, it’s more convenient, but our kidneys work 168 hours a week. Three times a week for four hours is inadequate. It’s not even close.”

Ironically, the pilot program at Humber River Regional has attracted attention from across Canada and around the world, inspiring health authorities in British Columbia, Australia, New Zealand and other jurisdictions to introduce nocturnal home hemodialysis.

“After 14 years of pilot programs and studies, you still don’t know?” asked St. Amour.

“The Ministry of Health sets aside $220 million per year for chronic kidney disease patients in Ontario. Is that money being distributed equitably in the province? I don’t think so.”


Renal Network

However, the recent establishment of the Ontario Renal Network by the Ministry of Health and Long-Term Care offers some reason for hope.

Spearheaded by Cancer Care Ontario, the Ontario Renal Network is promising to ensure “timely access to quality (chronic kidney disease) services regardless of where a patient lives in the province,” “promote home modalities where appropriate” and “support and encourage self care/self management and autonomy.”

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