The Kidney-Link Winter 2010 by The Kidney Foundation

Living Donor Transplant

Kidney-Link Volume 22 • No. 3 • Winter 2010-2011 The Quebec Branch of The Kidney Foundation of Canada (KFoC) would like to thank all its volunteers for their generosity and their continuous commitment and dedication to people living with kidney disease. In addition to being volunteers, they are the Foundation’s cornerstone, as they provide the means for the Foundation to carry out its mission.

Fleurette Bilodeau, An Extraordinary Volunteer

Fleurette taking part in the Kidney Walk in Montreal on May 16, 2010

Eighty-year-old Fleurette Bilodeau is still a woman of action with a big heart. She is well known in Longueuil, where she has raised over $60,000 since 2003 for the Summer Camp for Dialysis and Transplant Children, which is run by the Quebec Branch of the Kidney Foundation of Canada, by canvassing her neighbours and friends in both Longueuil and her native Lac-Saint-Jean. Moved by the story of a young man who made a public appeal on television for a kidney transplant, Fleurette decided to volunteer with The Kidney Foundation of Canada and contribute in her own way to improving the daily lives of kidney patients.

Important news about Bill no. 125: An Act to facilitate organ and tissue donation ................................................... 8 The 2011 Kidney Walk .................................................. 3 Interviews with Volunteers ................................. 4 and 5

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Your Health

Quebec Branch Newsletter

In this special issue of Kidney-Link, we highlight volunteers’ outstanding contributions to the fight against kidney disease. We will introduce you to some of the volunteers who work tirelessly, each in their own special way, in the Foundation’s various Quebec chapters to improve the quality of life of people living with kidney disease.

But this wasn’t Fleurette’s first volunteer endeavour. Every year for the past 40 years, she has organized a Christmas dinner for the elderly, people with disabilities, shut-ins and people in need. Thanks to her efforts, on December 11, 2010, more than 350 people enjoyed a wonderful Christmas dinner. As far as volunteers go, Fleurette is a real dynamo. In addition to working with seniors, people with disabilities and The Kidney Foundation of Canada, she lends an open ear to young people in difficulty, at all hours of the day and night. The high point of Fleurette’s volunteer career came in 1985, when Reader’s Digest profiled her in an article that would be translated into 17 languages. When Fleurette turned 73, fellow volunteers began to worry about her health and suggested that she stop fundraising. But for this woman who just can’t sit still, throwing in the towel was out of the question. At 80 years young, Fleurette Bilodeau still isn’t ready to pack it in and plans to keep helping others, something she has done so well for over four decades now. Thank you, Fleurette, for your tremendous dedication. Interviews with volunteers continued on page 4.

Organ Donation ........................................................... 6 Patient Services ........................................................... 9 News from the Chapters ............................................ 10 Research .................................................................... 13 Bulletin Board ............................................................ 14

The foundation of kidney care

The personal information you have provided is used only to send you this newsletter. To stop receiving it, please e-mail us at infoquebec@kidney.ca or call us at 514-938-4515. Readers: You can help enrich our newsletter by sharing your experiences with kidney disease or transplants. Please send a text of no more than 300 words, along with a high-resolution photo, to infoquebec@kidney.ca. COORDINATION AND WRITING Antoine Ardiley GRAPHICS AND PUBLISHING Ardecom PRODUC TION Ardecom CONTAC T US: The Kidney Foundation of Canada – Quebec Branch 2300 René-Lévesque Blvd West, Montreal, QC H3H 2R5 TELEPHONE 514-938-4515 or 1-800-565-4515 FAX 514-938-4757 E-MAIL infoquebec@kidney.ca Circulation: 10,000 copies The Kidney-Link newsletter and Your Health insert are published three times a year by the Quebec Branch of The Kidney Foundation of Canada. Distributed in English and French to all people suffering from kidney failure, these publications provide valuable information on the Foundation’s services and activities, including the latest findings on kidney disease and organ donation. The opinions expressed in Kidney-Link and Your Health do not necessarily reflect those of the Quebec Branch of The Kidney Foundation of Canada, its directors, employees or members. Moving? Please let us know at infoquebec@kidney.ca. Articles may be reproduced provided that the source is quoted.

Kidney-Link • Winter 2010-2011

A word from the Executive Director Organ donation: The Kidney Foundation of Canada, an important player in the adoption of new government measures A kidney transplant can radically improve the life of someone with kidney failure. About 80% of people on the province’s organ transplant list are awaiting a kidney. That’s why promoting organ donation is an integral part of The Kidney Foundation of Canada’s mission. The Quebec Branch of The Kidney Foundation of Canada created an Organ and Tissue Donation Committee years ago to raise public awareness about organ donation, and to call on governments to implement measures that would facilitate organ donation from living or deceased donors. November 11, 2010, marked a major milestone for people awaiting a transplant, for the Foundation and, more particularly, for the Organ and Tissue Donation Committee. Dr. Yves Bolduc, Quebec’s Minister of Health and Social Services, announced a series of measures, two of which were introduced by our organization. Health Minister agrees to two of The Kidney Foundation of Canada’s requests The minister announced that, from now on, the Quebec government would participate in the Canadian Living Donor Paired Exchange Registry. Participating in a complex, Canada-wide, paired living donor and recipient system will increase transplant opportunities when no compatible related donor kidney can be located. The Government of Quebec will also establish a living donor expense reimbursement program. Anyone who donates an organ will be reimbursed for certain expenses, such as

travel, meals, accommodation and loss of employment income, a measure sure to limit the potential drawbacks of giving so selflessly. Two other praiseworthy measures: Minister Bolduc has also announced that Quebec’s labour laws will be amended in order to protect the living donor’s employment following the operation. Since the bill was adopted, a leave of absence for organ donation is considered sick leave. Lastly, with the new Act to facilitate organ and tissue donation, the Régie de l’assurance maladie du Québec (RAMQ) has a mandate to develop a provincial registry for organ donations at the time of death. As a result, in addition to signing the back of their health insurance card, people who wish to donate their organs upon their death can add their name to the registry. Upon the donor’s death, health professionals will refer to the registry to ascertain the deceased donor’s final wishes. On behalf of the Quebec Branch of The Kidney Foundation of Canada and the more than 900 Quebecers awaiting a kidney transplant,* I extend my thanks to Minister Bolduc for all the measures that have been taken. I would also like to thank the Foundation’s volunteers and employees who, under the leadership of Dr. Michel Pâquet, introduced some of these measures.

Together we can make a difference

Martin Munger * As of December 31, 2009. Source: Québec-Transplant

The Kidney Walk

The 2010 Kidney Walk attracted more than 1,000 people and raised $130,000.

Did you know that in 2009, 14,700 Quebecers were either diagnosed with or treated for kidney failure?

Help The Kidney Foundation of Canada set new records by joining us on Sunday, May 15, 2011, to promote organ donation and help people suffering from kidney disease.

Of those people: • 6,400 use the services of a renal protection clinic (pre-dialysis) • 4,600 are on dialysis • 3,700 have received transplants

This year, the Outaouais Chapter will join the five other chapters participating simultaneously in the Kidney Walk. The Kidney Walk will take place in the Eastern Townships, the Mauricie, Montreal, the Outaouais, Quebec City, and Saguenay/Lac-Saint-Jean. The fundraiser seeks to help finance research and raise public awareness about kidney disease and the importance of organ donation. It’s a perfect opportunity for dialysis patients, transplant recipients, donors’ families, living donors, the medical community and the general public to support the advancement of renal health and organ donation. “Beyond saving lives, organ donation also improves the lives of the friends and family of transplant recipients,” said Louis Charest, President of the Montréal-Métropolitain Chapter of The Kidney Foundation of Canada, and father of 10-year-old Pénélope, who is alive and thriving today thanks to an anonymous donor.

Organ donation needs have risen sharply due to the rapid increase (about 10% per year) in the number of people living with kidney disease. The shortage of transplantable organs is a harsh reality for thousands of people in Canada. As of December 31, 2009, 1,200 Quebecers were on a waiting list for an organ transplant, 941 (78%) of whom were waiting for a kidney. For more information, and to register online, please visit www.kidney.ca/kidneywalk

REGISTER ONLINE TODAY You may also mail or fax us the registration form. Please print. Tear off and mail your registration form in a sufficiently stamped envelope, or fax it to: The Kidney Foundation of Canada – Quebec Branch 2300 René-Lévesque Blvd West, Montreal, QC H3H 2R5 Fax: 514-938-4757 In which region would you like to walk?

Eastern Townships Mauricie Montreal Outaouais Quebec City Saguenay/Lac-Saint-Jean

For more information about the Foundation, please call us at 1-800-565-4515.

• www.kidney.ca/kidneywalk First name Last name Address

City/Postal code Telephone

E-mail address

Mobile phone

Employer

Relationship to the disease Team name

Team leader

Kidney-Link • Winter 2010-2011

Your donation goes a long way at The Kidney Foundation

Profiles of volunteers who promote the Founda Dr. Martin Plaisance Eastern Townships Chapter Dr. Martin Plaisance has served as a nephrologist at Sherbrooke Hospital since 1999 and is an associate professor in the faculty of medicine at Université de Sherbrooke.

“Some people I’ve met at the dialysis unit can’t get around without a wheelchair. I’m incredibly lucky to be fully independent and to be able to move around freely despite the inconveniences this disease causes,” he said, always looking on the bright side of life.

For a number of years now, Dr. Plaisance has played a key role in organizing the Eastern Townships Chapter’s annual oyster party to support the Foundation’s initiatives.

With the invaluable support of Lévi Trottier and 230 volunteers, Nelson Bellavance organizes the door-to-door campaign for the Abitibi-Témiscamingue Chapter of The Kidney Foundation of Canada every March, which raises $50,000 a year.

Josée Parenteau, President of the Eastern Townships Chapter, contacted Dr. Plaisance in early 2010 and asked him to help organize that year’s event.

The Kidney Foundation of Canada is proud to have such an exceptional volunteer at its side—so exceptional, in fact, that in summer 2010, Nelson cycled an unbelievable 4,500 kilometres!

“Organizing a fundraiser takes a lot of time and dedication, but in the end, it’s very rewarding. We know that the fruit of our labour goes directly to helping people living with kidney failure,” said Dr. Plaisance.

Noëlla Gagné Saguenay/Lac-Saint-Jean Chapter

Why is Dr. Plaisance so committed to the Foundation? Because it funds research. A number of his colleagues have received grants from The Kidney Foundation of Canada, and even though the benefits of research are often felt only years later, research provides a real opportunity to improve the lives of thousands of people living with kidney failure.

Nelson Bellavance Abitibi-Témiscamingue Chapter Kidney Foundation volunteer Nelson Bellavance has been working actively for 10 years now and, in 2003, he became president of the Abitibi-Témiscamingue Chapter.

four hours of dialysis, three times a week. After 12 years on dialysis, not to mention 15 major operations since he was 17, Nelson is still a powerhouse of energy.

Born with only one kidney, Nelson Bellavance has been living with kidney failure since he was 17. In 1998, at the age of 50, Nelson was told that his single impaired kidney would not function properly without Kidney-Link • Winter 2010-2011

Noëlla Gagné has been a Foundation volunteer since early 2007, and in early 2009, she became the president of the Saguenay/LacSaint-Jean Chapter. After five years of dialysis treatments, she received a transplant in May 2006. Noëlla Gagné has always been a fighter. After retiring at age 45, she wanted to get involved and give of her time to help improve the lives of the dialysis patients she came to know so well and, above all, to promote research into kidney disease. “Volunteering makes me feel useful, and to be honest, it just makes me feel good about myself. So offering my services to the Foundation just came naturally,” she said. Teaming up with Nathalie Saulnier and a few other volunteers, Noëlla Gagné organizes a number of events. The second Saguenay/Lac-Saint-Jean Chapter Kidney Walk was held on May 16, 2010, and was attended by Dr. Bélisle, whose role as Foundation spokesman has helped mobilize many of the region’s nephrologists.

We're behind you all the way

ation Noëlla also organizes a number of Coffee Club Meetings for patients with kidney failure. “During these laid-back gatherings, patients can listen to professionals giving advice on concrete matters, such as tax credits for people with kidney failure. These events really help people lead better lives,” she adds.

Nicole Therriault Outaouais Chapter Nicole Therriault has been an organ and tissue donation resource nurse at Hull Hospital (CSSS de Gatineau) since 2003. Her role is to provide the help specifically requested by patients and their families, and to support them through the decision-making process. Once they’ve made an informed decision, she provides them with psychological and moral support, as well as a physical presence. After being contacted by The Kidney Foundation of Canada in 2004, she became the Outaouais Chapter’s organ and tissue donation specialist. Ever since, she has been a member of the committee tasked with raising public awareness about organ and tissue donations. In addition to educating dialysis nurses at Hull Hospital about organ donations, she is also a fully committed volunteer in the chapter’s various activities. “Since 2004, we’ve been organizing a golf tournament that raises $20,000 each year for people with kidney failure,” said Nicole Therriault. This year, for the very first time, the Outaouais Chapter will host its own Kidney Walk on May 15. The chapter also recently began organizing Coffee Club Meetings designed to inform people living with kidney failure about measures they can take to improve their day-to-day lives. “We’re delighted that new activities are being organized for this chapter of the Foundation, because we need to raise public awareness about organ donations and change people’s attitudes,” notes Therriault, who sees the recent arrival of a new head for the Outaouais Chapter as a good thing.

Louis Charest Montréal-Métropolitain Chapter June 28, 2004, will forever be etched in Louis Charest’s mind. That day, after three difficult years of dialysis, Louis’s fouryear-old daughter Pénélope had a kidney transplant, bringing hope that she would finally be able to live a normal life, just like other kids her age. Fully aware of the new lease on life this transplant had given his daughter, Louis wanted to devote himself to sensitizing the public to the realities of kidney disease and the importance of organ donation. In 2006, he took part in his first Kidney Foundation of Canada event. Thanks to Louis Mousseau, then-president of the Montréal-Métropolitain Chapter, Louis Charest joined the board of directors in 2007. That May, he was put in charge of organizing the city’s first Kidney Walk, which was held at Lafontaine Park and raised $5,000. In 2009, Louis became president of the Montréal-Métropolitain Chapter’s Kidney Walk Committee. The 2010 Kidney Walk in Montreal got 600 people moving and raised over $80,000 for people living with kidney disease and for research. “The Kidney Walk is a unique occasion for the Foundation to focus the spotlight on the crucial role our kidneys play in our body, and on the importance of keeping them healthy. It’s also an ideal opportunity to raise public awareness about the need for organ donation,” said Louis Charest, who will be doing his best to make the 2011 Kidney Walk the most successful yet.

Would you like to become a Foundation volunteer and support its work? Contact Joëlle Turck, Director, Volunteer Resources, at 514-938-4515, ext. 233.

The foundation of kidney care

Kidney-Link • Winter 2010-2011

Organ Donation CODA Gala On October 22, 2010, the Canadian Organ Donors Association’s traditional donor recognition ceremony took place at Sherbrooke’s Saint-Michel Cathedral. The Kidney Foundation of Canada would like to thank the 14 living donors honoured that day for having made a generous, life-giving donation to a loved one. Of course, we cannot fail to mention the 232 donors from Quebec who received the posthumous honour of Health Ambassador for having handed down the most precious inheritance According to a 2008 of all, life itself. Impact Recherche survey, a huge gap still exists between one’s willingness to donate organs The Honourable (9 out of 10 people) and actually Pierre Duchesne, signing the organ donation section Lieutenant Governor on the back of one’s health insurof Quebec, awarding ance card (5 out of 10 people), the Good Samaritan Medal to Lyne Beaulieu, which is why it’s vital to tell loved who gave one of her kidneys ones how important organ to little Raphaëlle Gosselin donation is to you.

(6½ years old).

“Gift of Life” Humanitarian Award 2011 “GIFT OF LIFE” HUMANITARIAN AWARD NOMINATION PERIOD The “Gift of Life” Humanitarian Award was created to recognize and express gratitude to businesses that, through their humanitarian work, have in some way facilitated kidney transplants or donation for one or more of their employees. The award seeks to raise awareness among Quebec businesses about the importance of supporting their employees during the kidney donation or transplant process. For instance, did your employer provide support by continuing to pay your salary while you were on leave to either give or receive a kidney, or allow you to take leave

Kidney-Link • Winter 2010-2011

to attend medical exams? If so, and if you would like to express your gratitude publicly, nominate your employer today by sending in a duly completed nomination form. You can obtain a form:

• • •

From the Foundation’s Web site (www.kidney.ca/quebec) under “Organ Donation” From an employee at your nearest transplant centre By calling 514-398-4515

Together we can make a difference

Organ Donation Respecting their last wishes is about respecting life By Simon Brodeur, member of the board of the Quebec Branch of The Kidney Foundation of Canada Just about every day, the media reports on tragic accidents and events that cost people their lives. Without warning, people’s precious lives are taken away. It can happen to any of us, and there’s little we can do about it. Families are always greatly affected by the loss of a loved one. And one of the hardest parts comes when the family is told that the doctors can’t do anything more, and that it’s time to say goodbye. Last Remembrance Day, Quebec Health Minister Yves Bolduc announced important measures that would facilitate organ donation, including the creation of a donation consent registry. For that, I would like to congratulate him. Unfortunately, this kind of news rarely makes headlines. We mustn’t forget that the list of patients awaiting an organ donation grows longer every year, not because of the lack of surgical space in our hospitals, but because of a lack of available organs. The list is now 1,200 potential transplant patients long; 78% of them are awaiting a kidney, and until they get one, each patient’s dialysis costs the healthcare system $40,000 a year. In this case, the lack of available organs can’t be blamed on the health minister or the healthcare system. It’s our own doing. Over the past few years, a multitude of public awareness campaigns have attempted to make people realize the importance of organ donation. Thankfully, each year more people are affixing a sticker on the back of their health insurance card, thereby informing others that,

after thoroughly considering the matter, they want to donate their organs upon their death in an ultimate act of generosity. Did you know that a single donor can save a number of lives, the lives of people in need of a heart, a kidney, lungs, a liver, a pancreas, intestines and more? Did you know that nearly one out of three families refuses to donate a loved one’s organs upon his or her death,1 even when that loved one had clearly consented to it after giving it serious thought and affixing a sticker to that affect on the back of his or her health insurance card? What moral right do any of us have to refuse to respect our loved one’s explicitly expressed last wishes? On what arguments do we base our refusal to acknowledge that one life lost can mean many lives saved? When the doctor gives you the heartbreaking news that there’s no more hope, there’s still one more difficult but precious step you can take: you need to agree to organ donation. This one act can save the lives not only of future transplant recipients, but also of their immediate families, because they too are desperately awaiting a better life. Unless and until the day when explicit consent to organ donation acquires the force of law as it has in other countries, we must recognize the vital importance of organ donation, life’s ultimate gift. If you have consented to organ donation by affixing the appropriate sticker on the back of your health insurance card, I highly encourage you to speak with your family to remind them that, should the unthinkable ever happen, you would like them to honour your last wishes. It’s a moral issue that’s really about having deep respect for life. Simon Brodeur

1 Source: “Approaching families for organ donation - the Quebec experience,” Québec-Transplant 2006 Kidney-Link • Winter 2010-2011

Organ Donation An Act to facilitate organ and tissue donation On December 8, 2010, Quebec’s National Assembly adopted the Act to facilitate organ and tissue donation. This unprecedented law is extremely important to The Kidney Foundation of Canada, which has been a fervent proponent of organ donation for many years, particularly as kidney transplants account for 75% of the transplants carried out in Quebec each year. This law covers four measures designed to promote organ donation:

1 - Organ donation consent following death and verification Consent for organ donation upon death can now be given in three different ways: By signing up with the Régie de l’assurance maladie du Québec (RAMQ) consent registry for post-mortem organ and tissue removal (new);

2 – The Canadian Living Donor Paired Exchange (LDPE) Registry Quebec’s participation in the Canada-wide Living Donor Paired Exchange (LDPE) Registry will enable patients and willing but incompatible donors to agree to an exchange in order to find compatible pairs. Once listed in the LDPE registry, people awaiting a kidney transplant will greatly improve their odds of finding a compatible living donor. Moreover, the lifespan of the transplanted organ is longer (18 years on average) when it comes from a living donor.

By registering with the Chambre des notaires du Québec;

3 - Living Donor Expense Reimbursement Program

By signing and affixing an organ donation sticker on the back of one’s health insurance card.

Living donors often need to travel to undergo medical exams, miss a few weeks of work and incur other expenses. As a result, their altruistic act can have a major financial impact. Thanks to this program, donors will be entitled to reimbursements of up to $5,715 to cover lost revenue and certain expenses, including travel, accommodation, meals and parking.

As a complement to the other sources of proof that a deceased person, or someone whose death is imminent, has consented to organ donation—informed family members, the sticker on the back of the RAMQ card and the registry held by the Chambre des notaires — the RAMQ registry will allow hospital staff to check quickly, via an accredited intermediary organization, whether that person is listed in the registry and has signed an organ and tissue donation consent form. It will also make it easier for families to carry out their loved one’s last wishes; this is particularly important considering that one of the leading factors for families’ refusal to consent to organ donation is that they are unaware of their loved one’s wishes.

The healthcare facility will thus be better able to carry out its mission of identifying potential donors, which is a key factor in increasing the number of transplants.

Kidney-Link • Winter 2010-2011

4 – Changes to Quebec’s Labour Standards The Act to facilitate organ and tissue donation also modified the province’s labour standards in order to protect donors’ employment and to make any absence required by the act of donating considered as sick/accident leave. These legislative changes should further encourage people to donate organs.

We're behind you all the way

Your Health The Kidney Foundation of Canada, Quebec Branch

Volume 22 • No. 3 • Winter 2010-2011

Living Donor Transplants People with severe kidney failure usually suffer a slow but progressive deterioration in their kidney’s ability to filter blood. When patients’ kidney’s filtration capacity hits a critical low—between 10% to 15% of normal—they must undergo a blood purification procedure to avoid the serious complications that can endanger their lives. Three options exist, each with its own advantages and potential complications: hemodialysis (usually three treatments a week at the hospital), peritoneal dialysis (at home) or a kidney transplant. A kidney transplant provides the greatest benefit in comparison to the two other blood purification techniques: better quality of life, more freedom to engage in daily activities and travel, better overall state of health, as well as a longer life. Unfortunately, getting a transplant is not always easy. First of all, the potential recipient must undergo a complete medical workup to ensure that the transplant can be carried out safely. The required exams and time involved can vary significantly depending

on the recipient—anywhere from a few weeks to several months. Once the workup is done, the patient is placed on the waiting list for a kidney from a deceased donor. Although Quebec has consistently maintained Canada’s highest post-mortem donor rate year after year, far from the required number of kidneys can be found for all those people awaiting a transplant. Currently, over 900 Quebecers are waiting for a kidney, and only 450 transplants are performed each year. What’s more, the number of new patients on the waiting list each year outpaces the number of transplants performed, leading to more people remaining on the ever-growing list. Moreover, the average waiting time for a kidney transplant (in cases of kidneys from deceased donors) is currently around two years, a timeframe that is also on the rise. To help offset the increasing organ shortage, a number of measures are being taken to raise awareness about the problem among the general public and health professionals, with the ultimate goal of increasing the number of donors.

This issue of Your Health was made possible through the financial support of

YOUR HEALTH • Winter 2010-2011

Your Health

Comparison between living and post-mortem donation

Prerequisites for a living donation

Kidney transplants can be done through living donors, an option that has a number of benefits over transplants from deceased donors. For one, this is the only way to provide a transplant quickly while ensuring the safety of both donor and recipient. Transplanting a kidney from a living donor brings together all the best conditions possible. Success rates are higher than those obtained when transplanting a kidney from a deceased donor: better kidney function, fewer post-operative complications, lower rejection rate and a significantly higher average lifespan for the transplanted kidney— 18 to 20 years, compared with 12 years when the kidney comes from a deceased donor. Faster access to a transplant, when a living donor is available, is beneficial not only because the time spent on dialysis can be reduced, but also, and more importantly, because the total duration of dialysis treatments can have a marked influence on transplant success, if the transplant takes place at all. When the total time on dialysis is reduced by as few as six months, rejection rates decline, the lifespan of the transplanted kidney increases, fewer cardiovascular complications arise in the years following the transplant, and the recipient’s lifespan increases. However, it is important to note that the number of living donor kidney transplants in Quebec today is too low. In fact, only one in five kidney transplants involves a living donor, whereas in the other Canadian provinces, the rate is one in two.

A living donor transplant can take place only if a number of conditions are met. To begin with, someone interested in donating a kidney to a loved one must personally and directly contact a transplant centre. This person will then be informed of the benefits to the recipient, the other options available to the recipient (dialysis, transplant from a deceased donor), and the potential risks of donating a kidney. Next, the transplant team has to ensure that the donor is in good physical and psychological health, and that the decision to donate a kidney is a well-informed one being made of one’s own free will. This typically entails a number of meetings with members of the transplant team, as well as several exams. This assessment usually takes under two months, but may also take considerably longer.

YOUR HEALTH • Winter 2010-2011

The total time the kidney donor has to spend in hospital is typically less than a week, and the donor can get back to his or her regular routine, including work, around six weeks after the leave began. Donating a kidney is very safe as long as all the above criteria are met. The risk of complications is extremely low, and for the donor, it’s business as usual without restrictions. Of course, like everyone, the donor should maintain a healthy lifestyle, which includes maintaining an appropriate weight, eating right, exercising regularly and not smoking. The transplant team conducts annual followups on people who have donated a kidney in order to quickly and effectively deal with any

Your Health medical problems that could potentially arise as a result of such an operation.

First transplant from a living donor The experience gained from the past 50 years or more has shown that people who donate a kidney do not have shorter lives than those who still have two kidneys, and are at no greater risk of developing kidney failure or one day requiring dialysis. The very first kidney transplant involving a living donor took place in Boston in 1954. In fact, that donor attended the 2004 celebration highlighting the 50th anniversary of this medical milestone.

A is able to donate to recipient Y, and that donor X can donate to recipient B. When the blood types and test results indicate that these two “crossed” transplants are compatible, we refer to it as a Living Donor Paired Exchange (LDPE).

The Canadian Living Donor Paired Exchange (LDPE) Registry

In order for both transplants to be successful, the surgeries on both donors take place at the same time, and both transplants immediately follow the removal of the donated kidneys. To maximize the odds of finding donor-recipient pairs to take part in such an exchange, a large number of incompatible donor-recipient pairs need to be identified. A Canada-wide registry was created in April 2009, but it was not until Living Donor Paired Exchange December 2010 that Quebec signed on. To To ensure the success of a living donor trans- date, five provinces have registered patients, plant, the donor’s and recipient’s blood types which has led to a number of transplants that need to be compatible. Specific laboratory would not otherwise have been possible. tests are also carried out prior to the transplant procedure to make sure that the reci- Living Donor Compensation pient’s blood does not react negatively to the Program donor’s cells. In cases where the donor and recipient are deemed incompatible, the risk of Although all costs involved in evaluating potenrejection becomes too high to attempt the tial donors (many exams and medical appointtransplant. However, one recent approach has ments) as well as surgical and hospitalization managed to overcome this particular obstacle. fees are currently covered by Quebec’s public health insurance plan (RAMQ), it was not until Let’s look at an example. Donor A wants to do- December 2010 that the Act to facilitate organ nate a kidney to recipient B, but the tests show and tissue donation was adopted, adding covthat their blood types are incompatible. It is pos- erage of a number of other expenses associated sible that another donor-recipient pair (donor X with donating: travel, accommodation and and recipient Y) are also incompatible for the meals, as well as, in some cases, loss of revenue same reason. However, it is possible that donor during the hospitalization and convalescence YOUR HEALTH • Winter 2010-2011

Your Health periods. Donors can therefore be reimbursed been taken in this respect by The Kidney Founfor expenses up to $5,715. dation of Canada, which plays a key role in raising awareness among the general public, The implementation of this expense reimburse- patients, health professionals and government ment program for living donors is a way to re- representatives so that more kidney patients ward acts of altruism by generous people who in Quebec can benefit from this preferred wish to donate a kidney to help a loved one. It treatment. is important to recognize that this is not a matter of paying someone to donate a kidney; it is Michel R. Pâquet* a question of reimbursing the donor for ex- Nephrologist, Montreal’s Notre-Dame Hospital penses incurred during the donation process. Chairman of The Kidney Foundation of Canada’s Provincial Organ Donation Committee In short, living donor kidney transplants are currently the best treatment for people living * Text written in September 2009 and upwith severe kidney disease. In Quebec, the dated in January 2011 following the Quenumber of kidney transplants occurring thanks bec National Assembly’s adoption of the to living donors is much higher than in other Act to facilitate organ and tissue donation on Canadian provinces. Many measures have December 8, 2010.

YOUR HEALTH • Winter 2010-2011

PATIENT Income tax Did you know that people living with kidney failure are entitled to tax credits? To find out more, refer to the Web sites of the Canada Revenue Agency (www.cra-arc.gc.ca) and Revenu Québec (www.revenu.gouv.qc.ca). You may also obtain the required forms and get advice from the Quebec Branch of The Kidney Foundation of Canada’s programs director.

Pagers Get a free pager! Bell Mobility offers people awaiting a kidney transplant a free pager for a renewable one-year period. Ask the Foundation’s programs director for the appropriate forms; her particulars are listed opposite. Note that in order to renew your subscription, you will need to complete a new registration form at the end of the 12month period.

Services

To receive documentation and information about the programs offered by the Quebec Branch of The Kidney Foundation of Canada, refer to the “Patient Programs and Support” and “Organ Donation” sections of our Web site at www.kidney.ca/quebec, or contact: Hélène Boisvert, Programs Director The Kidney Foundation of Canada – Quebec Branch 2300 René-Lévesque Blvd West Montreal, Quebec H3H 2R5 Tel.: 514-938-4515, ext. 224, or 1-800-565-4515 E-mail: helene.boisvert@kidney.ca

Prevention Mauricie Chapter hosts symposium on kidney failure prevention The symposium on kidney failure prevention organized by The Kidney Foundation of Canada was held on October 22, 2010, in Quebec’s Mauricie region and was attended by 80 people. Aimed at health professionals (general practitioners, nurses, dieticians, pharmacists and hospital administrators from the Mauricie region), local community health centres (CLSCs), nursing homes (CHSLDs), private clinics and medical centres, as well as representatives of the Agence de santé et de services sociaux de la Mauricie, the symposium’s main objective was to raise awareness about the realities of chronic kidney failure. However, the symposium had many specific objectives, including to: • Give participants a sense of the realities of chronic kidney disease in Quebec. • Demonstrate the importance of prevention when it comes to chronic kidney failure. • Inform participants about kidney failure’s impact on patients, society and the economy. • Inform participants about the risk factors leading to chronic kidney failure. • Inform participants about the medical means to prevent chronic kidney failure (prevention).

• Inform participants about the means used to recognize and treat the medical complications of chronic kidney failure. • Inform participants about the right time to direct a patient toward kidney substitution treatments (dialysis and kidney transplant). This event was made possible thanks to the hard work of the following Organizing Committee members: Chairman: • Dr. Pierre Nantel, Nephrologist, Sorel-Tracy’s Hôtel-Dieu Hospital Members: • Dr. Pierre Cartier, Nephrologist, Saint-Jérôme Hospital • Louise Corneille, Nephrologist, Centre hospitalier ambulatoire régional de Laval (CHARL), Laval’s Citéde-la-Santé Hospital Thanks to our sponsors: Ortho-Biotech, Bristol-Myers Squibb Canada, Sanofi Aventis and Shire.

The foundation of kidney care

Kidney-Link • Winter 2010-2011

News from the Chapters Quebec City Christmas Party The Kidney Foundation of Canada hosted a breakfast for kidney failure patients at Hôtel Québec, where more than 200 people enjoyed music and received door prizes. That day, at the same time, a party for dialysis patients was held at Quebec City's Hôtel-Dieu Hospital. Left to right: Gaétan Rhéaume, President of the Quebec City Chapter; Marcel Bédard, Outgoing President of the Quebec City Chapter; Pierre de Beaumont, Vice-president of Communications for the Quebec City Chapter.

Saguenay/ Lac-Saint-Jean Christmas dinner The traditional Christmas dinner for kidney failure patients took place on December 20 at Chicoutimi Hospital, where some 180 people including patients, staff, doctors, nurses and dietitians shared great holiday food and warm moments.

Eastern Townships Oyster party The traditional oyster party in honour of Jean-Jacques Bégin took place on October 8 at Sherbrooke’s Centre Julien Ducharme, giving over 100 people an opportunity to enjoy succulent oysters! Thanks to attendees’ generosity, the event raised nearly $10,000. From the left: Martin Munger, Executive Director of the Quebec Branch; Josée Parenteau, Eastern Townships Chapter President and Oyster Party Coordinator; Dr. Martin Plaisance, Nephrologist and Organizing Committee member.

Kidney-Link • Winter 2010-2011

Together we can make a difference

Montréal-Métropolitain FOUNDER’S AWARD CAMPAIGN Seventeen kidney transplant athletes receive the 2010 Founder’s Award

Held on November 24, 2010, The Kidney Foundation of Canada’s 20th annual Founder’s Award Gala was a tremendous success. At the event, 17 kidney transplant athletes who participated in the 2010 Canadian Transplant Games were given the Founder’s Award. The Gala brought to a close the 2010 Founder’s Award Campaign, which had been chaired by Luciano D’Ignazio, CA, of Schwartz Levitsky Feldman LLP, and Honorary Chairman Tony Loffreda, CPA, Regional Vice-president, Western Quebec & Place Ville-Marie, RBC Royal Bank. Thanks to their invaluable participation and dedication, as well as that of Founder’s Award Campaign Committee members, the event raised over $800,000, bringing the campaign’s 20-year fundraising total to over $14 million. “Organ donation is the ultimate act of generosity, a true gift of life. We thought it was important to honour these 17 remarkable people during our 20th annual Gala. They are living proof of what this gift of life can truly accomplish,” said Mr. Loffreda, Honorary Chairman of the Founder’s Award Campaign.

Front (left to right): Tony Loffreda, Honorary Founder’s Award Campaign Chairman, Nadine Ogonowski, Lloyd Mangahas, Rosa Shields, Carmen Boudreau, Luciano D’Ignazio, Founder’s Award Campaign Chairman. Middle (left to right): Jean-Christophe Nicolas, Lise Plamondon Guay, Riitta Kaarre, Elizabeth Ingram, Laureen Bureau. Back (left to right): Sarah Ferron, Sébastien Larochelle, Jonathan Émond, Gordon Denison, Guy Peterson.

This year’s Gala is proof that life really can be prolonged through organ donation, and in this particular case, through kidney donation. Every year, hundreds of Quebecers watch their health deteriorate due to kidney disease. Because they don’t have the opportunity to receive a transplant, they need medical care to stay alive. Initiatives like the Gala are essential, because they support

research that will one day find a cure for kidney disease and help everyone living with it today,” said Mr. D’Ignazio, Founder’s Award Campaign Chairman. As proud contributors to the measures included in the Act to facilitate organ and tissue donation, which was recently defended by Quebec Health Minister Yves Bolduc and subsequently adopted into law, the Foundation took the opportunity to honour these 17 kidney transplant athletes and celebrate the new act.

Kidney-Link • Winter 2010-2011

Your donation goes a long way at The Kidney Foundation

News from the Chapters Founder’s Award Campaign Golf Tournament The 12th annual Founder’s Award Campaign Golf Tournament took place under sunny skies at the Royal Montreal Golf Club on Île-Bizard on September 20, 2010. The event, which could only be described as a hole in one, raised $120,000 for the Foundation. We salute and extend our most heartfelt thanks to all the golfers and sponsors for their immense generosity. Their ongoing support will help the Foundation improve quality of life for people living with kidney disease. Luciano D’Ignazio, Founder’s Award Campaign Chairman, and Tony Loffreda, Founder’s Award Campaign Honorary Chairman.

Headliners’ Happy Hour The Headliners’ Happy Hour (5@8 Têtes d’affiches) took place at the Corona Theatre on November 17, 2010. This new concept, which was launched by the Montréal-Métropolitain Chapter of The Kidney Foundation of Canada, seeks to shine the spotlight on young Montreal entrepreneurs who stand out in their respective fields. Over 90 people took advantage of the warm and laid-back atmosphere of this all-new event to mix, mingle and network with the evening’s five headliners. By the end of the evening, the Foundation had raised over $4,000, which will be used to improve the day-to-day lives of people suffering from kidney disease. On the left, one of the headliners, Michael Charest, Human Resources Partner at ADP Canada, and Michel Lamoureux, Partner at Raymond Executive Search.

Soul of Hope Concert On October 23, 2010, at St-Hyacinthe’s Hôtel des Seigneurs, Pierre Lucien, a singer well known in the region, performed a benefit soul music concert for The Kidney Foundation of Canada before an audience of over 100 people. “All proceeds from the event went to The Kidney Foundation of Canada to help people with kidney disease. In fact, I’m one of those people, and I have to undergo dialysis several times a week, so it just made sense for me to try to make a difference,” said Mr. Lucien.

Kidney-Link • Winter 2010-2011

We're behind you all the way

RESEARCH The Kidney Foundation of Canada awards its 2010 Medal of Excellence to Dr. Kevin D. Burns Dr. Kevin D. Burns stands out as a pioneer dedicated to putting the fruits of his research to work for patients, and as a clinical researcher who is committed to training future scientists. For that reason, The Kidney Foundation of Canada awarded him the 2010 Medal of Excellence in Research. Dr. Burns is the former president of the Canadian Society of Nephrology and is currently directing the management committee of the Kidney Research Scientist Core Education and National Training Program (KRESCENT), a national basic sciences and clinical research program that he had a lead role in launching. “After playing an active part in creating the KRESCENT Program, Dr. Burns continues to show incredible leadership and devotion in providing young scientists with the best possible training so that they’ll be in a position to develop innovative multidisciplinary research programs themselves,” said Dr. MarieJosée Hébert, who holds the Shire Chair in Nephrology and Renal Transplantation and Regeneration at Université de Montréal. Dr. Burns’s work deals mainly with the function of the hormonal system in the kidneys that regulates blood pressure and fluid levels (renin-angiotensin system or RAS). His laboratory recently made some discoveries about the activity of an RAS enzyme called ACE2, which could provide protection against kidney disease. Dr. Burns is always seeking to find practical applications for his research, which could serve to help patients with kidney disease.

About Dr. Kevin D. Burns After graduating from McGill University, Dr. Burns went on to perform a research fellowship in the Division of Nephrology at Tennessee’s Vanderbilt University before returning to Canada, where he currently holds a large number of high-profile positions. Dr. Burns is Professor and Head of the Division of Nephrology at the University of Ottawa and at the Ottawa Hospital, Director of the Kidney Research Centre at the Ottawa Health Research Institute of the Ottawa Hospital, not to mention Vice-president of Research at the Department of Medicine at Ottawa Hospital. Dr. Burns has 80 original publications to his name, has had countless articles published in prestigious journals, and has either authored or co-authored seven book chapters.

DID YOU KNOW? The Kidney Foundation of Canada was founded by a group of devoted people who mobilized in 1964 after realizing how little kidney research was being done.

For the year extending from July 1, 2009, to June 30, 2010, the Foundation funded 61 projects in 27 centres, for a total of some $3 million.

Since it was created, The Kidney Foundation of Canada has awarded grants totalling nearly $100 million to support a variety of research projects nationwide, and the financial support it provides each year continues to increase.

The foundation of kidney care

Kidney-Link • Winter 2010-2011

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Chapter Volunteer Aw ard

Martin Munger, Executi ve Director of the Queb ec Branch, handing out the Chapter Volunteer Aw ard to Esther Girard (centr e), Vice-president of Pa tie nt Services for the Saguen ay/Lac-Saint-Jean Chap ter , along with Noëlla Gagn é, President of the Saguenay/Lac-Saint-Je an Chapter.

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Kidney-Link • Winter 2010-2011

rooke eting in Sherb e M b lu C e e écal Coff thèque Eva-Sén lio ib B at , 11 0 2 March 30, 2011 paign – March m a c r o o -d to Door, 2011 Day – March 10 y e n id K d rl o W Week an Donation National Org 24, 2011 from April 17 to 2011 alk – May 15, W y e n id K e h T ral Meeting Annual Gene , 2011, May 28 and 29 in Val-d’Or

Together we can make a difference

PROVINCIAL RECOGNITION AWARDS handed out at the AGM 1.

ral Annual Gene Meeting ranch The Quebec B Foundation of The Kidney hold its annual of Canada will g (AGM) general meetin d 29, 2011, on May 28 an tel Suite at L’Escale Hô in Val-d’Or. no later than Kindly register y contacting May 2, 2011, b ud Jocelyne Rena 15, ext. 230, at 514-938-45 5-4515. or at 1-800-56

BECOME A MEMBER OF THE FOUNDATION Complete the form on the back of this newsletter.

THANKS FOR YOUR SUPPORT

PRESIDENT’S AWARD This award is given to an exceptional volunteer who has actively contributed to the Foundation’s mission in an out-of-the-ordinary way.

2. MORTY TARDER AWARD Young Montreal architect Morty Tarder died of complications brought on by kidney failure. His family got together to create an organization to raise funds for research that would lead to a better understanding of this disease. The award is given to the chapter that has provided the Foundation with exceptional support in all its activities. 3. COMMUNICATIONS AWARD This award is given to a journalist, media representative or media organization in recognition of efforts made to raise the public’s awareness of the Foundation. 4. FINANCIAL DEVELOPMENT AWARD This award is given to an individual, group or chapter whose efforts to help the Foundation reach or surpass its non-corporate fundraising goals is deemed extraordinary. 5. MICHEL PERRON AWARD In April 1993, a week after receiving a kidney transplant, Michel Perron decided to become a Foundation volunteer in order to help promote organ donation. His commitment to the Foundation’s work, his contribution and his accomplishments have made their mark on the Foundation. This award is given to a company that makes a major financial contribution, by either donating directly or organizing a campaign to benefit the Foundation. 6. JEAN-JACQUES BÉGIN AWARD Jean-Jacques Bégin supported the Foundation and all its activities. He chaired a number of patient services committees, and served as President of the Eastern Townships Chapter and of the Quebec Branch from 1980 to 1982. His unremitting work led to considerable improvements in patient services. This award is given to an individual, group or chapter whose commitment to providing patients with programs and services is deemed extraordinary. 7. ORGAN DONATION AWARD This award is given to an individual or group whose outstanding commitment to the Foundation’s programs and activities has helped promote organ and tissue donation. 8. CHAPTER VOLUNTEER AWARD This award is given to a volunteer whose efforts have constituted a remarkable contribution to the growth and development of the chapter’s activities. 9. GIFT OF LIFE HUMANITARIAN AWARD This award seeks to recognize an employer whose efforts facilitated the kidney donation or transplant process for one or more of its employees.

Kidney-Link • Winter 2010-2011

Your donation goes a long way at The Kidney Foundation

The mission of The Kidney Foundation of Canada The Kidney Foundation of Canada is the national volunteer organization committed to lessening the burden of kidney disease through: • funding and stimulating innovative research; • providing education and support; • promoting access to high quality healthcare; and • increasing public awareness and commitment to advancing kidney health and organ donation.

www.kidney.ca/quebec

Quebec Branch 2300 René-Lévesque Blvd West Montreal, Quebec H3H 2R5 Tel.: 514-938-4515 1-800-565-4515 Fax: 514-938-4757 infoquebec@kidney.ca

2011

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Kidney-Link • Winter 2010-2011

Your donation goes a long way at The Kidney Foundation