Retirees back battle for better dialysis; Support teen's fight

[okarol]

Retirees back battle for better dialysis; Support teen's fight for home kidney treatment they say would save his life

Carol Mulligan
Tuesday, July 10, 2007 -  © 2007  The Sudbury Star

Tuesday, July 10, 2007 - 09:00

Local News - Groups representing thousands of Sudbury retirees are lending their support to a life-or-death battle by a Sudbury teenager and his father.

Jessie St. Amour, 18, and his father, Richard, have been fighting for months to gain access to a better form of dialysis to treat Jessie's kidney failure.

Jessie undergoes conventional hemodialysis three days a week, four hours a day, at Sudbury Regional Hospital.

But both the teenager and his father know a superior form of blood filtering is available to residents in southern Ontario communities. It's called nocturnal home hemodialysis and it has been the subject of pilot programs at several hospitals in Ontario for more than a dozen years.

It has become the gold standard for dialysis around the world, although the Ministry of Health and Long-Term Care has yet to approve it for widespread use in Ontario.

Nocturnal home hemodialysis is performed slowly, overnight, while a person sleeps, and more closely resembles the function of normal kidneys.

Receiving the treatment would make a world of difference to Jessie, who suffers constant fatigue and malaise.

Jessie's kidney's failed as a result of Alport syndrome, a hereditary disease that causes hearing loss and kidney failure. He has been receiving conventional dialysis since December, but the treatment has side-effects.

One of the greatest risks is to his heart, and Jessie is on at least five medications to prevent heart disease.

The ideal for Jessie would be a kidney transplant, and he and Richard recently travelled to London Health Sciences Centre so the teen could be assessed to determine if he was a suitable candidate. He is, but it could be months, even years, before a kidney becomes available.

In the meantime, both are determined to gain access to the home hemodialysis.

The St. Amours have a powerful ally in longtime workplace health and safety activist Homer Seguin, 73.

Seguin and Jessie St. Amour are an odd couple, but both suffer kidney failure. Seguin has lost all but eight per cent of kidney function after years with diabetes.

The senior was touched by the plight of a young man whom he says has his whole life ahead of him. So Seguin turned to a constituency with whom he holds formidable sway - thousands of mining retirees.

Seguin has already sent a petition to Ontario Health Minister George Smitherman, demanding the treatment be made available in the North. Smitherman has said that is unlikely, given it hasn't been approved yet in Ontario.

Neither Seguin nor the St. Amours were satisfied with the minister's response.

At a meeting Monday at the Steelworkers' Hall, representatives of groups representing thousands of seniors in the city signed Seguin's petition to Smitherman.

Jessie St. Amour, who just graduated from St. Charles College, spoke to the seniors about how his failing health.

Last winter, Jessie played hockey for St. Charles College's hockey team, but that wouldn't be possible the way he is feeling now.

Seguin is convinced that if "fair-minded people" knew more about nocturnal home hemodialysis, they would support a pilot program being established in Sudbury.

Aside from its health advantages, the treatment would result in significant cost savings to the health care system.

Seguin hopes an organized lobby will put pressure on Smitherman and his Health ministry before the Oct. 10 provincial election.

In recent years, senior lobbyists persuaded the province to stop transferring long-term care residents out of Sudbury to beds in Parry Sound and on Manitoulin Island.

Sudbury Regional Hospital officials have said they are ready to run a nocturnal home hemodialysis program if they received funding for it.

The hospital is already spending more on conventional dialysis than it is being funded for, says senior vice-president Joe Pilon.

cmulligan@thesudburystar.com

Printed from www.thesudburystar.com web site

[Black]

Retirees back battle for better dialysis; Support teen's fight for home kidney treatment they say would save his life

Carol Mulligan
Tuesday, July 10, 2007 -  © 2007  The Sudbury Star

... Aside from its health advantages, the (home) treatment would result in significant cost savings to the health care system.  ...

Printed from www.thesudburystar.com web site

This is the key that will allow all of us to bring the medical community into the 21st century and provide the quality of care and quality of life that all dialysis patients deserve.  When all is said and done the $$$ are what will carry them.  Health care is after all a business and being cost effective to increase their profit is their goal.

Bill Peckham has worked hard on education.  Karol regularly posts informative articles.  Epoman started this site; others have taken over for him.  We all should be educating everyone around us, and I believe all of us involved in home dialysis carry an extra burden of responsibility.  I made sure that one of my Seantor's employees saw Mike's NxStage and is aware that we are saving Medicare many thousands of $$$.  I will make sure that she will be reminded several times a year.  We may be traveling on business again in September, and if we do, I am going to try to get the newspaper there to do a piece on Mike and his NxStage and make sure they emphasize the $$$ savings.

[okarol]

Sudbury teenager will get home dialysis after all; But he'll have to travel to Toronto for training, monitoring

Carol Mulligan
Local News - Thursday, August 30, 2007 @ 09:00

Word that a Sudbury teenager suffering kidney failure has been accepted into a home dialysis program in Toronto is good news for his family, but it comes at a price.

The treatment will improve Jessie St. Amour's health and quality of life, but the 18-year-old will have to put college on hold to get care that could - and many argue should - be available in Sudbury.

St. Amour has kidney disease as a result of a rare genetic disease called Alport syndrome. He has been receiving conventional dialysis since December at Sudbury Regional Hospital.

Jessie visits the hospital three days a week, four hours at a time, so his blood can be filtered through a machine that does the work of normal functioning kidneys.

His father, Richard St. Amour, has been fighting to gain access for his son to a form of dialysis available to residents of southern Ontario, which is not offered in Northern Ontario.

Jessie should be attending Cambrian College next month to study business administration, but instead he will travel to Toronto for four to six weeks of training at St.
Michael's Hospital.

St. Michael's will also provide the teen, who will turn 19 on Sept. 15, with a home machine so he can dialyse himself more often and for longer periods of time.

Currently, he receives 12 hours of treatment weekly in Sudbury.

Many home patients dialyse at night, while they are sleeping, to minimize its impact on their lives.

Nightly dialysis is called nocturnal home hemodialysis and has been offered in pilot programs at several southern Ontario hospitals for years.

It has tremendous benefits for kidney patients over conventional, three-times-a-week hospital dialysis.

Because it's gentler, patients aren't as exhausted the day after treatment. They can stop taking several medications to treat high blood pressure, and they have more freedom to eat and drink normally.

Proponents of home dialysis argue it is less expensive in the long run because it eases pressure on hospital resources.

Health Minister George Smitherman has told The Sudbury Star that home dialysis is a "fantastic" treatment for kidney patients.

But he says the province can't afford the start-up costs to offer the program throughout Ontario, including the North.

Richard St. Amour is relieved his son has been accepted at St. Michael's, but is furious his family has to leave the North to obtain the best treatment for Jessie.

"It doesn't have to be like this," he said Wednesday.

He is confident Jessie can be quickly trained to do dialysis at home because he has taken a self-care course at Sudbury Regional Hospital.

Jessie is on the Ontario Support Disability Program because of his illness, so the province will be paying the full cost for the teenager and his father to travel and stay in Toronto for several weeks.

This week, Richard St. Amour is busy renovating his Flour Mill area home so a technician from St. Michael's can install plumbing and electrical hookups for the dialysis machine.

Jessie is on a waiting list for a kidney transplant, and home dialysis is a stop-gap measure until the family gets the call it is waiting for from London Health Sciences Centre.

Sudbury Regional officials have said they are ready to launch a home dialysis program as soon as they receive funding, and are training conventional dialysis patients to administer their own treatment.

Jessie and his father will have to return to Toronto monthly so the teenager can be monitored. It's a situation Richard St. Amour calls "ridiculous, absolutely ludicrous" because it will end up costing the Ontario government more than if it funded the program here.

Now that his son has the opportunity to obtain a better form of dialysis, Richard St. Amour says he isn't giving up the fight to get the treatment in Sudbury.

At least one other Greater Sudbury resident, Norm Fex, is currently receiving home dialysis from St. Mike's and other kidney patients have been pressing the local hospital and the province to receive it.

http://www.thesudburystar.com/webapp/sitepages/content.asp?contentid=673595&catname=Local+News&classif=

[okarol]

Teen fighting for home dialysis gets a kidney

Posted 2 days ago

Jessie St. Amour, the poster child for northerners demanding a better form of kidney dialysis, had a dream come true this week.

Instead of recovering from his first day of training in home dialysis Tuesday, the Sudbury teenager was rushing by taxi from Toronto to London Health Sciences Centre for a kidney transplant.

"It's a beautiful day," said an ecstatic Richard St. Amour in a telephone interview Wednesday afternoon from London, where his son was recovering from the six-hour surgery.

"He's doing exceptionally well."

Rather than spending a month on what St. Amour considers the mean streets of Toronto, he and wife Anne will remain by their son's side in London as he recovers from the transplant.

Saturday, they will celebrate Jessie's 19th birthday - and his new lease on life.

The St. Charles College graduate has been undergoing conventional hemodialysis at Sudbury Regional Hospital since December when his kidneys failed, a complication of a hereditary disease called Alport Syndrome inherited from his mother.

Anne underwent a kidney transplant when Jessie was six, and she and Richard were devastated when their youngest son later developed kidney complications.

Despite being ill, Jessie continued in school and competed with the St. Charles Cardinals on the football field and the ice rink until the end of both seasons last year.

Since Jessie's kidneys failed, his father has been fighting to gain access to a better form of kidney dialysis offered at many hospitals in southern Ontario.

Jessie's cause captured the attention of retired mining health and safety activist Homer Seguin, who enlisted powerful seniors' groups in the city to press Health Minister George Smitherman to fund the treatment here.

Smitherman says that nocturnal home hemodialysis - long, slow blood filtering that resembles normal kidney function - is the superior form of treatment.

He has also said his government doesn't have the money to offer the treatment provincewide.

He shouldn't think the point is moot now that Jessie has received a new kidney. His father is vowing never to give up the fight on behalf of dialysis patients in Sudbury.

For now, though, Richard is celebrating the fact his son's new kidney is an exceptional match.

"It was better than perfect," he said.

St. Amour said the family knows the kidney came from a young person "and that's unfortunate."

He and Jessie have talked many times about how his transplant would come at the cost of someone else's life, "but we've put that to rest for now," said St. Amour. "We'll deal with that later."

St. Amour said the mood was jubilant at St. Michael's Hospital when he and Jessie learned a kidney was available.

"Jessie was taken aback. He was shocked, but there was no fear."

He and his son were well prepared "to handle anything," said Richard.

"We've been through this so many times. We've never had a negative conversation about what we were trying to do. We prepared for the worst, but we expected the best."

He and Jessie were so excited when they got the phone call from Sudbury, they couldn't wait to catch a bus from Toronto to London. Instead, they asked the cabbie who drove them from St. Mike's to their Toronto hotel to take them to London.

St. Amour was surprised when the hotel clerk waived all fees for their brief stay, and the cab driver exchanged his rundown taxi for a Lincoln Continental while father and son were hastily packing for London.

They drove in style - and in record time.

When word came that a kidney was available for Jessie, Anne left Sudbury and arrived in London just 10 minutes before her son went into surgery at 4 a.m.

Eldest son Steven remained in Sudbury, celebrating his birthday he thought would be forever associated with the terrorist attacks in the United States on Sept. 11, 2001. Now, Sept. 11 will bring memories of a better time.

Richard wasn't sure how long Jessie would have to remain in hospital, but he expected his son to be up and walking as early as Wednesday night or Thursday morning.

"I really don't know. He's a tough kid."

cmulligan@thesudburystar.com

http://www.thesudburystar.com/ArticleDisplay.aspx?e=691229&auth=Carol+Mulligan