Kidney Link Spring 2014 by The Kidney Foundation

Kidney Link Spring 2014

The Kidney Foundation of Canada – Quebec Branch

The Kidney Walk OF THE KIDNEY FOUNDATION OF CANADA

On May 25, The Walk is back! The annual Kidney Walk is set to take place in 16 cities across Quebec on May 25, 2014. This outstanding event gives voice to all those volunteers who promote the fight against kidney

The Foundation’s efforts to increase the number of kidney transplants are already paying off

disease. Each in their own way, they share their experiences of kidney disease and transplantation. The Foundation is very grateful for their involvement in this year’s Kidney Walk More on page 3

Ever consider donating a car to the Foundation? It’s for a good cause!

The Foundation is pursuing its campaign to raise the number of kidney transplants performed in Quebec to 350 by 2017, and its efforts are already paying off. More on page 9

On the occasion of the Foundation’s 50th anniversary, we pay a special tribute to our volunteers. Thanks to their involvement, the Foundation can pursue its mission to improve the lives of people suffering from kidney disease, promote organ donation and fund research. More on page 6

Bernard Brault

Fifty years of volunteering

Not only will the car you donate be towed away for free, but you’ll also get a tax receipt from the Foundation. More on page 11

Jacques Duval, Kidney Car Program spokesman

Message from the Executive Director and the President .. 2

Organ donation ............................................................ 8

The 2014 Walk ............................................................ 3

Research .................................................................... 10

Fifty years of volunteering ........................................... 6

Patient Services .......................................................... 11

News from the Chapters............................................... 7

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 kidney transplantation. 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 PRODUCTION Ardecom CONTACT 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 f r o m k i d n e y f a i l u r e, t h e s e publications provide valuable information on the Foundation’s services and activities, including the latest findings on kidney d isease 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 • Spring 2014

Message from the Executive Director and the President

Securing concrete results for patients Our organization has been around for 50 years and in that time, successive generations of volunteers and staff have tried to make their team efforts lessen the burden of kidney failure on patients, their loved ones and society as a whole. We do not work in a vacuum. Our successes are often the product of teamwork and factors such as the structure of the healthcare system, public investment in health, advances in research, demographics and the economy, all of which can have a positive or negative impact on the burden of kidney disease. The kidney transplant waiting list got shorter in 2013 The Foundation’s Organ and Tissue Donation Committee launched a major campaign to convince the Government of Quebec to adopt several measures aimed at increasing the number of kidney transplants performed each year to 350 from the current 250. In 2013, the Foundation submitted a report to Quebec’s Minister of Health and Social Services. The report contained six recommendations on how to better structure the healthcare system in order to promote the transplantation of organs from both deceased and living donors. With the help of spokespeople Hélène Héroux and Gaétan Frigon, we held a media tour to promote living donation. We were clearly in the public eye as we appealed to the decision-makers in defence of patients’ interests. As a number of our recommendations are being implemented, Dr. Michel Pâquet, Chairman of the Organ and Tissue Donation Committee, with our help, is drafting a reference document that will be used to continue the successes achieved by CHUM in the area of living donor kidney transplants. In addition to these developments, we wish to point out that the number of deceased-donor transplants hit an all-time high in 2013 and that, for the first time in years, the number of people on the kidney transplant waiting list actually decreased. Improving dialysis in Quebec Encouraged by advances in the field of kidney transplantation, the Foundation set up a working group to identify the issues surrounding dialysis in Quebec in order to develop an action plan aimed at providing patients with quality treatments at home or nearby. Raising public awareness about kidney health Over half a million people in Quebec have kidney disease, but a majority of them are unaware of it. Lack of awareness of their health status can influence the progression of the disease and their overall condition. For that reason, the Foundation dedicates energy and resources to better informing Quebecers and encouraging them to pay more attention to their kidney health. To do so, we launched a new online self-evaluation tool for kidney health, readily available to everyone (http://www.kidney.ca/RiskAssessment). We also take our kidney health clinics for at-risk populations to public spaces and workplaces, where people can meet with nurses to have their blood pressure and glucose level measured. The Kidney Walk Of all fundraising activities organized by The Kidney Foundation of Canada, The Kidney Walk has grown the most. The Walk is a perfect opportunity for patients, their loved ones and health professionals to come together in an activity that raises public awareness of our cause and the associated challenges. In 2014, the number of Walks will rise from 9 to 16. Present throughout Quebec To deliver patient services, raise public awareness and promote organ donation, seven chapters provide a presence for the Foundation in their respective regions. Yet even that that is not enough. We are working hard to launch new chapters so that the Foundation might one day span the entire province. In fact, two new chapters will open in 2014.

Christopher Gobeil National President

Research Last year, the Quebec Branch contributed nearly $1 million to research and national programs. Research helps reduce the impact of kidney disease by improving treatments while generating concrete benefits for patients. The Quebec Branch’s contribution, together with those of the other branches, has enabled the Foundation to invest over $110 million in research since it was created 50 years ago. Playing a key role in patient well-being The combined efforts of volunteers and donors throughout Quebec, supported by a small team of skilled and dedicated employees, have enabled the Foundation to fund promising research initiatives, provide patients with better service, raise our cause’s profile with the general public and government, and secure funding from tens of thousands of donors and businesses.

Together we can make a difference

Martin Munger Executive Director

Walking The Walk in 16 cities in Quebec Dolbeau Dollard-des-Ormeaux Gatineau Joliette Saint-Bruno (Longueuil agglomeration) Maniwaki Montreal Quebec City

Rouyn-Noranda Saguenay Saint-Georges de Beauce Saint-Jean-sur-Richelieu Saint-Jérôme Sherbrooke Trois-Rivières

Also, the Tour de rein cycling event will be held in Laval on May 24.

Claire Lacaille (Maniwaki)

Sylvie Lefebvre (Gatineau)

Claire Lacaille knows all about kidney disease, having spent the past three years at the side of her husband, Michel Roy, who suffers from granulomatosis with polyangiitis. Formerly known as Wegener’s granulomatosis, the disease first attacks the blood vessels and then vital organs such as the kidneys. On March 27, 2011, Michel wasn’t feeling well. He had lost his appetite, felt very weak Claire Lacaille, organizer of The Kidney Walk in Maniwki and was unable to urinate. He and his wife Claire decided to go emergency at Maniwaki Hospital, and he was later transferred to Hull Hospital for more exams. The next day, the diagnosis was in and Michel was immediately put on dialysis. From that point on, he underwent dialysis at Maniwaki Hospital three times a week. Early this year, some good news finally arrived. Michel was put on peritoneal dialysis at home in February, which was a major relief for both him and Claire. They naturally considered a kidney transplant, but because Michel has had cancer twice, he has to wait nearly two years before being put on the transplant waiting list. “I had no idea so many people had kidney disease,” admitted Claire, who now wants to get involved with the Foundation, not just because of what Michel has gone through, but also because she wants to help children with the disease. Claire, who is president of the Aumond Optimist Club for youth, believes that no child should have to suffer. She is organizing the Maniwaki Kidney Walk, to be held on May 25, 2014. She and her committee hope to raise $5,000 and to see at least 50 people turn out to walk The Walk in Maniwaki. “I’m pretty sure we’ll reach our goal,” said Claire, who wants to raise as much money as possible for kidney research.

“Team Lefebvre” at the Gatineau Kidney Walk in 2013

“This year, The Kidney Walk will have a special meaning for the Lefebvre family,” explained Sylvie Lefebvre, who just lost her father, Claude, only a few weeks ago following a battle with terminal kidney failure. “Our father started having complications due to kidney failure in 2004,” she said. In the past 10 years, he had two kidney transplants. In 2007, his younger sister gave him one of her kidneys. “That first transplant was a true gift of life,” said Sylvie. Unfortunately, due to complications, he had to go back on dialysis after only nine months. In 2011, he was given a second chance when a kidney from an anonymous donor became available. Thanks to thrice-weekly plasmapheresis treatments to keep antibodies from attacking the donor kidney, the graft served him well until March 2014. “In the last 10 years, we supported him through the ups and downs of his kidney disease,” said Sylvie, who will be taking part in The Kidney Walk with her family and friends for the fourth year in a row in honour of her father, Claude Lefebvre. “We’ll take part in The Walk forever, because it was important to our dad,” she added. Sylvie promotes organ donation by encouraging people to sign their health insurance card and support those with kidney disease. Kidney Link • Spring 2014

Your donation goes a long way at The Kidney Foundation

The 2014 Kidney Walk Sylvie Charbonneau (Montreal) In December 2012, Sylvie gave her son Benoît the best Christmas gift ever: she gave him life by donating one of her kidneys to him. At 27, Benoît found out that he suffered from a form of degenerative kidney disease and that his renal function was at 25% of normal. Only two years later, it was down to 15%, edging ever closer to the 10% level that would inevitably mean dialysis. Sylvie Charbonneau donated one In the meantime, Sylvie had of her kidneys to her son Benoît seen a report on organ dona-

tion and was ready to give Benoît a kidney. Sylvie and her husband are both compatible potential donors for their son, so they decided that they would both undergo the evaluation tests, which started in late summer 2011 and lasted a year. In the end, Sylvie’s kidneys were found to be healthier than her husband’s, so it was decided that she would be the one to donate a kidney to their son. The operation was scheduled for December 2012. Sylvie confessed to being petrified of falling ill in the three months leading up to the operation, as the slightest illness would have disqualified her from donating. But that did not happen: the surgery was a success and would be remembered by Sylvie as the happiest day of her life. She had just given a new lease on life to her son, who is set to become a father in late 2014. After the operation, Benoît’s greatest joy was to be able to drink apple juice, a pleasure denied him over the years because of his failing kidneys. President and cofounder of change-management firm Brio Conseils and professor at HEC Montréal, Sylvie Charbonneau first got involved with The Kidney Walk last year. “Life’s been very good to me, so it’s only natural that I pay it forward by helping thousands of people suffering from kidney disease regain their health,” said Sylvie, who feels that more people need to know about the Foundation.

Christina Tanguay-Dumas (Quebec) After my husband was diagnosed with kidney failure, I decided to get involved with The Kidney Foundation of Canada. That was nearly two years ago. Today, I am a member of the Walk Committee and I sit on the Board of Directors. Your participation has a real impact I encourage you to take part in your region’s Kidney Walk on May 25, 2014. By participating, you’ll have an impact Christina Tanguay-Dumas, in many areas. You’ll help member of the Quebec City raise public awareness of kidWalk Committee and the ney failure, highlight the imQuebec City Chapter Board portance of organ donation of Directors and raise funds to support research that will ultimately lead to better quality of life for people with kidney failure. The people who take part all have one thing in common: they or someone they know and love has been affected by kidney failure. That’s why a shared sense of belonging energizes Walk participants, who feel as though they are part of a huge family. People interacting, cooperating, supporting each other with a smile on their face—this is the way things get done! The Kidney Walk: fun for the whole family! Running around in our daily lives, most of us probably wish we could spend more time with the people we love. The Walk is a perfect opportunity to get together with family and friends and share some great moments. You can even use the occasion to go on a picnic or have dinner with the people you love. Special moments are meant to be shared with family, because they’re the ones who are there for us when we need support. Have a good Walk! We look forward to seeing you in Quebec City!

She has set herself a personal fundraising goal of $3,000 and wants her team to raise $10,000. These are ambitious goals, but as Sylvie puts it, “The Walk is an important source of funding, and it’s thanks to the research the Foundation supports that my son is here today,” said Sylvie, who admits getting a kick out of asking businesses to support The Kidney Walk.

Kidney Link • Spring 2014

Together we can make a difference

Lyne Cartier (Saint-Jean-sur-Richelieu) For the second time, Lyne Cartier will be organizing the Saint-Jeansur-Richelieu Kidney Walk to be held May 25. Lyne is all too familiar with the effects of kidney disease, which is what led her to organize the first Walk there in 2013. Her mother passed away in 2000 after suffering from kidney failure for seven years, and her daughter, 29, has had kidney problems since she was only six months old. Her experience with the disease pushed her to act. After participating in the Montreal Kidney Walk a few times, Lyne approached the Foundation with the idea of holding a Walk on the South Shore, which she thought would benefit area patients. At last year’s event, the area’s first, Lyne and all the volunteers raised nearly $5,000.

Lyne Cartier, organizer of the Saint-Jean-sur-Richelieu Walk

For the second edition of the St-Jean-sur-Richelieu Walk, Lyne put her experience organizing events to good use to do even better and reach her $8,000 target. “The Kidney Walk is a unique opportunity to make people from the region aware of the realities of kidney disease. And it’s also an important boost for doctors, patients and their families,” said Lyne, who hopes to reach out to as many people as possible to help make sure kidney research is properly funded. The five-kilometre Walk will be held on the athletics track at the Canadian Forces Leadership and Recruit School (CFLRS) in Saint-Jean-sur-Richelieu. Participants are asked to arrive at 9 a.m. And naturally, registration is free!

Véronique Fournier (Saint-Jérôme) April 11, 2014, will mark the 6th anniversary of Véronique Fournier’s transplant. A nurse in the Hemodialysis Department at Saint Jérôme’s Hôpital Hôtel-Dieu, Véronique suffered from congenital nephropathy, although her illness was not detected until 2005, when she was 18. After undergoing constraining Véronique Fournier, Honorary Chair hemodialysis treatments of the Saint-Jérôme Kidney Walk, for three years at Hôtel- with her daughter Jenny, age 2½ Dieu, her father donated one of his kidneys to her. In Véronique’s words, the transplant, performed at Royal Victoria Hospital on April 11, 2008, was “the gift of life.” Thanks to her new kidney, Véronique and her husband David Léveillé were able to have little Jenny, who is now two and a half years old. In fact, Jenny is the third baby born to a mother who had a kidney transplant at Montreal’s Royal Victoria Hospital. “It’s a wonderful chapter in my life story,” said Véronique. To raise awareness of the benefits of organ donation, Véronique produced a video entitled Sensibilisation au don d’organes, 2014, which is available on YouTube. “When I was sick, I had a lot of support, so it only makes sense to give back,” said Véronique, who is the Honorary Chair of this year’s Kidney Walk in Saint-Jérôme. Through her involvement, she hopes to inform the public about organ donation and dispel the myths that surround it. She and the entire organizing team hope to raise $5,000 and attract over 200 walkers to the event.

Put a team together and walk with us on May 25!

Support kidney health and organ donation Register by going to kidney.ca/quebecwalk 1. Select the city where you would like to walk 2. Register 3. Start raising funds 4. Meet up, come walk and get set for an unforgettable day with friends and loved ones Kidney Link • Spring 2014

Your donation goes a long way at The Kidney Foundation

Let’s make The Kidney Walk a huge success Here are a few simple ways to raise funds for The Kidney Walk: • Solicit individual donations from your friends, loved ones, coworkers and connections. There is no minimum individual amount to raise, but last year, participants raised an average of $250 each. • You can also organize a gathering or special event, adding the proceeds to your personal Kidney Walk target. • Encourage the members of your team (be it a two- or threeperson team, family or group) to use these simple and effective means to reach the objective you have set. • The important thing is to state clearly why you plan to attend this year’s Kidney Walk. By expressing your enthusiasm for the Foundation’s cause, you will rally others to your side.

Fiy years of volunteering By the Kidney Foundation of Canada – Quebec Branch Volunteer Resource Committee

hen The Kidney Foundation of Canada was created in 1964, its small group of founders knew all too well that they had their work cut out for them because of their lack of human and financial resources. Back then, they weren’t called volunteers like the thousands of people who followed in their tracks; they were called visionaries. But volunteering was now the way forward. Without the volunteers’ conviction that kidney disease needed to become an ongoing concern, today’s kidney patients would probably not enjoy the many benefits resulting from research and well-developed patient services. In their small way, these founders set out on a mission to mobilize a core group of volunteers who would lay the foundations of what would eventually become the organization we know today. And now more than ever, this same motivation drives us to go even farther to widen our network of people who give generously of their time, ideas and initiatives, while giving us access to their personal and professional connections in order to help us achieve our fundraising goals. Recruiting volunteers and keeping them involved with the Foundation are two recurring challenges we face each year. The quality of care and treatments is such that, today, more and more patients and their loved ones join our ranks as volunteers. In addition to their daily contributions, they subtly bring us back to what is essential—striving for a better world for kidney and dialysis patients, and transplant recipients.

Kidney Link • Spring 2014

The Foundation is slowly but surely reaching more and more of Quebec, so that volunteers can reach out within their respective parts of the province to spread the word, raise funds and ensure their chapter’s longevity by actively recruiting other volunteers to take the reins when the time comes. And on it goes… For 50 years now, our many volunteers have made their mark on the Foundation’s history. Wherever possible, the Foundation has fostered involvement by volunteers where they can achieve personal fulfilment and, if they so wish, grow as part of a group. And no task is too small or too great. On behalf of all kidney patients, may our volunteers past, present and future accept our humble appreciation and our expression of sincere gratitude and recognition!

Presidents of the Quebec Branch of The Kidney Foundation of Canada since it was founded in 1964 Arthur Boidman (Founding President) 1964 Harold W. Ashenmil 1969-1970 Charles Roth 1970-1971 David Ornstein 1971-1974 Louis Lapierre 1976-1978 Jean-Jacques Bégin 1980-1982 Claude Maillet 1982-1985 Raymond Girard 1985-1987 Mark Tourangeau 1987-1989 Denis Marquis 1989-1990

We're behind you all the way

Sylvain Thibault Clément Lemieux Jean Rousselle Danielle Poulin Patrice Waché Michel Perron Denis Marquis Claude Pigeon Alain Ouimet Christopher Gobeil

1990-1993 1993-1995 1995-1998 1998-2000 2000-2002 2002-2004 2004-2006 2006-2009 2009-2011 2011-2014

News from the Chapters GATINEAU A new president for the Outaouais Chapter At the annual meeting of the Outaouais Chapter held March 9, members of the Foundation gathered to discuss what lies ahead and the activities planned for 2014. It was the perfect opportunity to introduce members to the action plan for kidney disease prevention and raise awareness of organ donation in the region. Richard M. LeBlanc was elected President of the Outaouais Chapter for the coming year. He will be assisted in his mandate by the other members of the Board: Joanne Anka, Laureen Bureau, Joanne Godbout, Francine Houle and Jean Simon Leblanc.

Chapter priorities for 2014 The Chapter is proud to announce that a second Kidney Walk will be held in the region on May 25 thanks to the efforts of Claire Lacaille and her group of volunteers. The event will take place in Maniwaki and host many participants from the nearby Algonquin community of Kitigan Zibi.

The Aimé-Charon Golf Tournament benefitting the Foundation is back for its 20th year. Join us on June 5 at Club de golf Héritage in Notre-Dame-de-laPaix. Again this year, our members plan to attend all the major regional events and set up stands to encourage prevention Richard M. LeBlanc, and promote organ donation. President of the We will also continue to hold Outaouais Chapter our public awareness talks on the importance of organ donation. We expect to hold ten or so talks this year. We wish to thank Laureen Bureau for her involvement and enthusiasm in making this important part of our mission a reality.

Upcoming

golf

QUEBEC CITY Group cooking classes for patients of Lévis’ Hôtel-Dieu hospital Patients at Hôtel-Dieu in Lévis can now attend group cooking classes. This all-new activity coordinated by the Foundation will work with recipes from the Kidney Community Kitchen website and the cookbook series, Spice It Up! Giving Zest to Your Renal Diet. Upcoming classes take place on May 28 and June 18 from 1 p.m. to 4 p.m. at La Chaudronnée, 4 Charles Rodrigue Street, Lévis, G6V 6L8. For more information, go to www.chaudronnee.org. To register, contact Maryse Néron at 418-683-1449 or maryse.neron@rein.ca.

tournaments

Mark Your Calendar June 5 - Aimé-Charron Golf Tournament organized by the Outaouais Chapter and held at Club de golf Héritage in Notre-Dame-de-la-Paix (for information, contact Bruno Tousignant at 819-661-5079) June 6 - Cunningham’s Golf Tournament at Hudson’s Falcon Golf Club (for information, contact Meskerem Berhanu at 514 938-4515, ext. 229) June 13 - Quebec City Chapter Golf Tournament (for information, contact Maryse Néron at 418-683-1449) September 15 - Founder’s Award Campaign Golf Classic (for information, contact Meskerem Berhanu at 514 938-4515, ext. 229)

The foundation of kidney care

Kidney Link • Spring 2014

Organ Donation More than 500 people received a transplant in 2013 and the number of patients on the waiting list for a transplantation decreased by 15%, marking the first decrease in eight years! By Transplant Québec

n 2013, some 503 people benefitted from a transplantation thanks to 165 deceased donors in Quebec and their families, a significant increase of 45 donors compared to 2012. The number of people on the waiting list decreased by 15% from 1,250 people at the end of 2012 to 1,047 on December 31, 2013, thus matching the number of people on the list eight years ago. Also in 2013, a total of 38 deaths were reported among people on the waiting list, some 31 fewer than in 2012. That said, a single death is still one too many.

Transplant Québec is pleased, and there are grounds for cautious optimism Transplant Québec is proud to present a positive update. For the first time, Quebec has attained the benchmark of 20 deceased donors per million inhabitants (dpmi) with a rate of 20.2 donors. This also marks a first in Canada. “The efforts deployed by all stakeholders in the organ donation and transplantation system over the past three years and the measures undertaken by the government to support organ donation have begun to pay off,” said Louis Beaulieu, the organization’s CEO. “It is vital that we continue to build on this momentum.” At the same time, Transplant Québec remains cautiously optimistic. “When it comes to organ donation, nothing can be taken for granted,” added Mr Beaulieu. Indeed, if all the conditions were right each time organ donation was possible, the maximum number of donors per year would be slightly more than 300, according to the estimates of the Collège des médecins du Québec . Transplant Québec will continue to support these collective efforts as actively as possible by collaborating closely with health and social services establishments when it comes to identifying all potential donors in critical care units and bringing the organ donation process to a successful conclusion. The organization once again invites citizens to officially signal their intentions regarding organ donation after death by registering their consent and duly informing their loved ones. Awareness promotion, public education and training are among the keys to success.

Kidney Link • Spring 2014

“As a representative of the families of donors and recipients on Transplant Québec’s board of directors, it is important that I remind people that organ donation can make all the difference in the lives of recipients and their families, but also for donor families – and they attest to this on a regular basis,” said Ms. René Dussault, president of the board. Transplant Québec wishes to remind people that organ donation enables the health system to achieve savings, largely because the vast majority of kidney transplant recipients no longer require dialysis treatment. There were 275 deceased donor kidney transplants in 2013, and an additional 53 kidney transplants from living donors. In addition, a more timely organ transplant not only saves lives, but it also promotes speedier recovery times and reduces the significant costs incurred by lengthy hospitalizations, which are the norm for many people waiting for a vital organ such as a heart, liver or lung. “With a higher number of donors meeting the medical and legal criteria for organ donation, there is a higher probability of finding a donor more quickly, and hospitalization times and the risk of death are reduced as well. At the end of the day, our society as a whole benefits,” said Mr. Beaulieu.

Declaring one’s intention to become a potential donor Transplant Québec invites every citizen to learn more about organ donation, signal their intention to their loved ones, and take concrete action in one or more of the following ways. (www.signezdon.gouv.qc.ca): • Sign the form titled Con-

sent to Organ and Tissue Donation issued by the Mr. Louis Beaulieu, Executive Director, Transplant Québec Régie de l’assurance maladie du Québec. The consent form is included with the

Together we can make a difference

renewal of health insurance card. It may also be ordered at any time by calling 1 800 561-9749. • Sign the consent sticker upon reception of your new health insurance card and affix it to the back of the card. • Register your consent (or refusal) with the Registre des consentements au don d’organes et de tissus administered by the Chambre des notaires du Québec

About Transplant Québec Transplant Québec has a mandate from the Minister of Health and Social Services to save lives and improve the

health of persons in need of a transplant by coordinating the organ donation process, ensuring the equitable allocation of organs, supporting best clinical practices through consensus-building and the mobilization of its partners, and promoting organ donation in the society at large. Transplant Québec therefore works to ensure that the greatest possible number of Quebecers waiting for an organ can benefit from a transplant in as timely a fashion as practicable. 1 Potential organ donors in Quebec-based hospitals in 2009. 2 Based on figures available from transplantation programs

The Foundation’s efforts to increase the number of kidney transplants are already paying off

he Foundation is continuing its campaign to raise the number of kidney transplants performed in Quebec, from both cadaveric and living donors, to 350 by 2017, and its efforts are already paying off.

To reach this target, a number of recommendations were made to Quebec’s Minister of Health and Social Services to stress the urgency of the situation. An economic study and a report, Soutenir la pratique de la greffe rénale au Québec : pourquoi et comment (Supporting the practice of kidney transplants in Quebec: why and how), both clearly demonstrate the financial benefits of transplantation. These efforts have already yielded results: in early March, the Foundation met with Dr. Louis Couture, Assistant Deputy Minister at the Directorate General of Health Services and Academic Medicine in Quebec. A number of recommendations tabled by the Foundation have already become pilot projects. Among these recommendations, the Foundation suggested putting a physician in charge of coordinating, in conjunction with a resource nurse, all steps in the deceased donor organ retrieval process. This measure will be implemented at 10 to 12 medical centres in 2014. Next, the Foundation recommended that a pilot project be launched with an eye to structuring and supporting organ retrieval and transplantation activities at specially selected institutions, which would be given a special budget for this purpose. This pilot project is under way at Montreal’s Sacré-Cœur Hospital and the results to date are very promising. Should the evaluation of the pilot project be conclusive, three or four more retrieval centres could be accepted.

In terms of living donor kidney transplants, the Assistant Deputy Minister has asked the Chair of the Foundation’s Organ and Tissue Donation Committee, CHUM nephrologist Dr. Michel Pâquet, to develop a framework for promoting the adoption of his practices at other transplant centres. The CHUM transplant centre, often noted for its efficiency, has seen the most significant growth in the number of living donor transplants. And lastly, the Foundation is currently developing an informative website for people interested in becoming a living donor. Every year, approximately 250 transplants are performed in Quebec. The Kidney Foundation of Canada is delighted to see transplant rates grow by 15% in 2013. In addition to the 275 grafts from deceased donors, 53 kidneys from living donors were also transplanted, bringing the 2013 total of kidney transplants to 328. Without taking all the credit for this increase, we are convinced that the Foundation’s major campaign to promote kidney transplantation helped raise the profile boost the visibility of organ donation in the media. Yet despite this, the number of patients awaiting a transplant remains very high. On December 31, 2013, 1,047 Quebecers were on the waiting list for an organ transplant, 785 (75%) of whom were waiting for a kidney. And many people pass away while still on the waiting list. The number of people suffering from kidney failure continues to climb, and all signs indicate that the trend is unlikely to ease anytime soon, due mainly to the aging population and the rise in the incidence of diabetes and high blood pressure, which are precursors to kidney disease. Kidney Link • Spring 2014

Your donation goes a long way at The Kidney Foundation

Research Research facts - Investments 2013-2014 The Kidney Foundation is investing $4.5 million Since 1964, The Kidney Foundation has invested in 74 research grants awarded with partners for over $110 million to support kidney-related research. a total of $7.2 million. The Kidney Foundation 2013-2014 Grant Distribution by Areas of Focus

Does not include the KRESCENT Program.

The Grant totals includes funds disbursed directly by the Alport Syndrome Foundation (USA), the Canadian Institutes of Health Research (CIHR), Kidney Cancer Canada, the NephCure Foundation as well as the organizations mentioned below for the KRESCENT Program.

Did you think of making a donation in your will?

KRESCENT total includes amounts disbursed directly by Canadian Institutes of Health Research (CIHR) $479,184, Fonds de la recherche en santé du Québec (FRSQ) $67,454, Canadian Diabetes Association $35,000, Universities and Research Institutes $125,000, Canadian Child Health Clinician Scientist Program (CCHCSP) $17,500 and New Brunswick Health Research Foundation (NBHRF) $24,000.

Kidney Link • Spring 2014

If you would like to find out more about making a gift in your will, please contact Martine Riopelle at martine.riopelle@rein.ca or 1-800-565-4515 • www.kidney.ca/planned-giving

Together we can make a difference

Patient 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

A new free dialysis service for Southern Florida I

s it possible to get dialysis treatments in Southern Florida for free? For all the Quebecers who travel to this part of the US each year, it is now! Thanks to his contacts in the pharmaceutical industry, Yves Dubé, a Quebecer who has been on dialysis for three years, established a partnership with the Universal Kidney Center (UKC), a major dialysis clinic with five centers in Southern Florida. From now on, Quebecers vacationing in Southern Florida can have their dialysis treatments at any UKC centre without having to foot the bill. Quebec’s health insurance plan, RAMQ, will pay the $220 cost of each treatment directly to the clinic. Only the initial $150 set-up fee is not covered by RAMQ. UKC’s five centres are located throughout Southern Florida, in Fort Lauderdale, Boynton Beach/Palm Beach, Margate/ Coral Springs, Davie and Pembroke Pines/Miramar.

Bernard Brault

Recycle your old jalopy with the Kidney Car program

aunched in Quebec in 1995, Kidney Car is a fundraising program created by the Foundation. The concept is remarkably simple: if you have an old car you would like to part with, you can donate it to The Kidney Foundation of Canada. The Foundation has agreements with a number of Quebec auto recycling partners that will tow your vehicle away for free. Once your old car is off the road, it is broken down into parts to be either re-sold or fully recycled. You’re not only contributing

This new service is excellent news for the thousands of Quebecers on dialysis. Until now, if they wanted to continue their dialysis treatments at a clinic in Florida, they had Yves Dubé is behind this to pay the fees up front and new partnership with the request a reimbursement from Universal Kidney Center in RAMQ once they returned to Southern Florida Quebec, where processing often takes several months. The cost of weeks’ worth of dialysis treatments can reach several thousand dollars in the US, which can create a financial burden for people with limited funds. To find out about availability at the dialysis centres or for any other question, visit universalkidneycenters.com or call 786 290 4270 (service is available in French at the Pembroke Pines clinic).

“As The Kidney Foundation of Canada celebrates its 50th anniversary this year, I am particularly pleased to be the spokesman for the Kidney Car Program and to be able to help promote this worthy endeavour. I am particularly drawn to this humanitarian cause, which incidentally helps boost road safety.” Jacques Duval to a good cause, you’re also helping reduce greenhouse gases and doing something good for the environment. In addition to free towing, you’ll get a tax receipt from The Kidney Foundation of Canada for the value of your donation. For more information on the Kidney Car program, visit kidney.ca/kidneycar.qc Kidney Link • Spring 2014

Your donation goes a long way at The Kidney Foundation

The Kidney Foundation of Canada 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

www.kidney.ca/quebec

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2014

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