Kidney community newsletter | Winter 2018

WINTER 2018

The Kidney Foundation of Canada – Quebec Branch

newsletter

ORGAN DONATION

A new recognition program for living donors page 7

SPECIAL FEATURE

Transplanted four years ago thanks to a living donation

Polycystic kidney disease, an expensive drug available

page 6

pages 2, 8 and 9

The personal information you have provided is used only to send you this newsletter. If you no longer wish to receive it, please e-mail us at infoquebec@kidney.ca or call us at 514-938-4515.

Dear readers: Help enrich our newsletter by sharing your experiences with kidney disease or transplants! Please send a text of up to 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 newsletter is 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 news about kidney disease and organ donation.

The opinions expressed in this newsletter are not necessarily those of the Quebec Branch of The Kidney Foundation of Canada, its directors, employees or members.

Moving? Write us at: infoquebec@kidney.ca.

Articles may be reproduced provided that proper credit is given.

WORD FROM THE EXECUTIVE DIRECTOR

PEOPLE WITH POLYCYSTIC KIDNEY DISEASE DESERVE FREE ACCESS TO THE ONLY DRUG THAT SLOWS THE DISEASE’S PROGRESS. Autosomal dominant polycystic kidney disease (ADPKD) is a hereditary, chronic and progressive disease that causes a five- to ten-fold increase in kidney volume and invariably leads to end-stage renal failure. Currently, there is no cure or way to stop the deterioration of renal function. However, tolvaptan slows the process and can significantly delay the start of dialysis.

The use of tolvaptan in Canada has been approved by Health Canada. Pharmaceutical company Otsuka Canada markets a medication called Jinarc™ whose active ingredient is tolvaptan. A year’s supply of Jinarc™ costs $30,000, an expense reimbursed by most private health insurance companies in Canada. However, the Institut national d’excellence en santé et en services sociaux (INESSS) refused to place Jinarc™ on the list of drugs reimbursed by Quebec’s health insurance board, the Régie de l’assurance maladie du Québec (RAMQ). Otsuka Canada is now preparing to submit a new request to have Jinarc™ included on the basis of the significant findings of a new study. In the interest of patients with ADPKD, the Quebec Branch of The Kidney Foundation of Canada is asking INESSS to accept the request.

Why take this stance?

Tolvaptan is approved by Health Canada, while in Europe, specifically in France, it is reimbursed as long as certain criteria are met.

Currently the majority of patients in Canada who take JinarcTM are reimbursed by their private insurer. However, these patients are vulnerable because of the risk that they would lose their private insurance if they were to lose their job.

Nephrologists can ask that their uninsured patients benefit from the Exceptional Drug procedure in order to be reimbursed by the government. This individual procedure is sometimes applied for a short time (even in cases of chronic illness) but is sometimes refused, causing wellwarranted worries, additional risks and delays in receiving a treatment with so much potential.

According to the nephrologists we consulted, administering Jinarc™ helps slow the increase in kidney volume and slow kidney function deterioration, thus delaying the start of dialysis for patients by an average of three years.

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The Kidney Community Newsletter WINTER 2018

Although Jinarc™ is expensive ($30,000 a year), a year of dialysis costs approximately $90,000.

While taking the medication can bring a risk of liver toxicity, this can be controlled by regularly monitoring the patient.

Simply put, tolvaptan is the only treatment available to slow the development of ADPKD. The current situation is unfair to patients who do not have private insurance for whatever reason. The Quebec Branch of The Kidney Foundation of Canada is therefore asking INESSS to add Jinarc™ to the list of drugs reimbursed by the Régie de l’assurance maladie du Québec (RAMQ).

Martin Munger Executive Director The Kidney Foundation of Canada Quebec Branch

KIDNEY CAR

THE KIDNEY CAR PROGRAM AND THE KIDNEY FOUNDATION OF CANADA TEAM UP TO FIGHT KIDNEY DISEASE The Kidney Car Program has been around for 25 years!

The program gives you a chance to help the Foundation by donating your car, truck or other vehicle and making a huge impact along the way. In exchange, you’ll get free towing and an income tax receipt for $300.

This act of generosity not only helps protect the environment and improve road safety, but it also contributes to the fight against kidney disease.

New and improved!

For higher-value vehicles and in a few other cases, vehicles are evaluated and may be deemed fit for resale. If that happens, they can be resold, at which point the vehicle’s previous owner will receive an income tax receipt for more than $300*

NEW KIDNEY CAR PROGRAM WEBSITE: KIDNEYCAR.CA

Donate a vehicle – 24/7 service!

With a new website dedicated exclusively to the Kidney Car Program, you can now donate your old (or not-so-old) jalopy day or night. Simply complete the online form and a call centre employee will get back to you within two business days.

Don’t wait: donate your car to Kidney Car by completing the form at kidneycar.ca.

PROUD PARTNER OF THE KIDNEY CAR PROGRAM

*Based on the assessed value at the time of donation

GIFT OF LIFE HUMANITARIAN AWARD

THE FOUNDATION IS SEEKING CANDIDATES FOR THE GIFT OF LIFE HUMANITARIAN AWARD In 2006, the Quebec Branch of The Kidney Foundation of Canada launched the Gift of Life Humanitarian Award to recognize the humanitarian efforts businesses have made in a variety of ways to facilitate kidney transplants or the kidney donation process for one or more of their employees.

HYDRO-QUÉBEC, ONE OF THE RECIPIENTS OF A GIFT OF LIFE HUMANITARIAN AWARD

This award is the result of a situation where 850 Quebecers are currently on the province’s organ donation list, and 70% of them are awaiting a kidney.

Despite the fact that 331 kidney transplants were performed in 2016, nothing can be taken for granted when it comes to organ donation.

Consequently, the Foundation continues striving to raise public awareness and wishes to remind everyone of just how vital organ donations are for people on the waiting list hoping for a new kidney.

Nominating your company is as easy as 1 - 2 - 3 - 4. Go to kidney.ca/humanitarian, print and complete the form, and send it off to us. Assuming that all the criteria have been met, we will get in touch with you to get the awarding process underway. It’s that easy.

What better way to recognize the support you or someone you know received during the donation or transplant process?

In 2017, the Foundation awarded four Gift of Life Humanitarian Awards: Costco Drummondville, GLC Audio Vidéo (Mont-Laurier), Hydro-Québec (Beauharnois) and TUAC 501 (Montreal).

The Kidney Community Newsletter WINTER 2018

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OUR EVENTS & ACTIVITIES IN REVIEW

OVER $65,000 RAISED THROUGH THE NEW LEASE ON LIFE CONCERT Nearly 200 people came out for the third edition of the New Lease on Life Concert for The Kidney Foundation of Canada, featuring the Orchestre Métropolitain, on October 20, 2017, at the Maison symphonique. The concert shone the spotlight on mezzo-soprano Marjorie Maltais, who gave her rendition of a work by José Evangelista under the direction of Alain Trudel.

The event raised money for the Quebec Branch of The Kidney Foundation of Canada to fund medical research, deliver patient services, advocate for access to quality healthcare for all Quebecers suffering from kidney disease and promote organ donation.

The Foundation would like to thank everyone who came out, as well as the volunteers who helped organize the event and the sponsors who supported it.

Thank you to the sponsors of this evening:

PROUD PARTNER OF THE KIDNEY CAR PROGRAM

THE JEAN-JACQUES BÉGIN BENEFIT DINNER RAISED $17,200 FOR THE FOUNDATION

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OUR EVENTS & ACTIVITIES IN REVIEW

$5,520 RAISED AT THE SECOND EDITION OF THE MADELEINE VALLÉE SPAGHETTI LUNCHEON Bravo to the volunteer organizers of the Madeleine Vallée Spaghetti Luncheon, held October 15, 2017, in Trois-Rivières, which raised $5,520 for The Kidney Foundation of Canada.

This second edition of the event made for smiles all around as diners got to enjoy a delicious lunch and a performance by vocal ensemble ZoneJazz in the early afternoon.

UPCOMING ACTIVITIES

THE FOUNDATION WILL AGAIN TAKE PART IN THE SCOTIABANK CHARITY CHALLENGE Do you enjoy running and challenging yourself? We’ve got just the thing for you! Join the Foundation and take part in the next Scotiabank Charity Challenge. It’s a chance to take part in a major sporting event while raising money for a good cause.

The Scotiabank Charity Challenge will take place on April 21 and 22, 2018, at Jean-Drapeau Park in Montreal. The event will feature a number of races: choose between the Montreal kids’ race and the 5K, 10K and 21K races.

In 2016, the 66 participating charities raised a total of $1.2 million.

For more information, contact Dany Babin at 514-938-4515, ext. 232, or dany.babin@kidney.ca.

THIRD-PARTY EVENTS Third-party events are organized by volunteers dedicated to the fight against kidney failure.

Here’s what one person did. Sylvie Charbonneau, President of the Quebec Branch of The Kidney Foundation of Canada, took part in the St-Alphonsede-Granby Christmas market, where she sold little socks, hats and mittens that she’d knitted herself. She then donated the proceeds from those sales to The Kidney Foundation of Canada.

If you have ideas for special events that you would like to organize for The Kidney Foundation of Canada’s benefit, get in touch with Dany Babin at 514-938-4515, ext. 232, or dany.babin@kidney.ca.

SYLVIE CHARBONNEAU’S TABLE AT THE ST-ALPHONSE-DE-GRANBY CHRISTMAS MARKET

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ORGAN DONATION

WHO COULD IMAGINE A MORE WONDERFUL GIFT? For the past four years, I’ve been living with a new kidney, an unexpected gift from my little sister. Today, we’re both in great shape and living life to the fullest.

In 2012, after a decade of suffering from kidney failure — nephrologists didn’t know what caused it — I met the staff at the Notre-Dame Hospital transplant clinic, and to this day, I am grateful for their professionalism, understanding and dedication.

My kidney function wasn’t even at a vital minimum, so I needed outside help, and that meant long-term dialysis and a somewhat diminished quality of life. They explained my options to me: a kidney from a deceased or living donor.

My husband automatically offered me one of his. But for medical and compatibility reasons, the team couldn’t consider his offer.

After that let-down, I was talking to my family one day when my sister Josée suggested that she get assessed by the donor program. The process just flowed naturally from there and as soon as she met the medical team, she was at ease with the whole thing.

Given the time it takes to carry out the tests and prepare for the transplant, I had to undergo dialysis for three months before having the transplant. After that, the operation went smoothly and the new kidney kicked into action right away.

COLETTE LABONNE (RIGHT) RECEIVED A KIDNEY FROM HER YOUNGER SISTER JOSÉE

And because it was from a family member, the outcome couldn’t have been better!

For my sister and me, it was a huge success. Josée is very proud of what she did for me and realizes just how much she helped change my life. And for me, it was truly life-changing: I have more energy, my appetite has improved, and I’m in better shape than I’ve been in for a long time. What she did for me really brought us closer!

We’re all winners in this story!

And of course, I have to mention the time I spent recovering at the Maison des greffés. I consider myself very lucky to have been able to benefit from all their services, which are vital to an effective recovery: proximity to the hospital, their dedicated staff, the accommodation and the food.

Colette Labonne

KARINE’S FIGHT FOR HER DAUGHTER NAÉLIE, WHO SUFFERS FROM A RARE KIDNEY CONDITION Karine Fournier is a true fighter. A single mother from Saint-Lazare-deBellechasse, near Quebec City, she has to cope with the fact that her fouryear-old daughter Naélie suffers from KARINE FOURNIER AND HER DAUGHTER NAÉLIE focal and segmental glomerulosclerosis, or FSGS. This rare disease, whose cause is unknown, makes the body’s glomerules secrete blood protein into the urine, which in half of cases leads to the development of chronic kidney failure within 10 years of diagnosis.

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It all started with a seemingly trivial urinary tract infection on returning from a trip to Cuba in May 2016. During a check-up the following week, Naélie’s pediatrician noticed that her blood pressure was abnormally high. The doctor ordered an ultrasound and additional tests and followed up with a biopsy, which revealed that Naélie had this rare disease. The news hit Karine hard — she had never heard of the disease and knew that there was no family history of kidney-related diseases.

In late October 2016, the disease progressed quickly, and Naélie’s kidney function dropped to 40%. She was immediately transferred to the Montreal Children’s Hospital. Three months later, Karine had to come to terms with the fact that her daughter, whose kidney function was still declining, would have to start peritoneal dialysis. That called for the insertion of a catheter, but it got blocked quickly during the initial dialysis sessions. In early April 2017, after a few complications, Naélie finally started dialysis in earnest, and soon afterwards, the decision was made to remove both her kidneys. 

ORGAN DONATION

Following the nephrectomy, mother and daughter returned home, but with zero renal function, Naélie had to undergo peritoneal dialysis nightly for 12 hours.

three to four times a week. At that moment, after giving it serious thought, Karine decided to give one of her kidneys to her daughter. The transplant was scheduled for October 30.

“It’s really hard, but we have a routine and we’ve gotten used to it.”

Karine

“Giving one of my kidneys to my daughter was a hard decision to make. I’m a single mother and I didn’t want anything to happen to me. I wanted to make sure I’d be around for my daughter.” Karine

Good news: a transplant may be possible The possibility of a transplant arose in November 2016. Karine asked if she could be assessed as a potential living donor. In March 2017, she received confirmation that she qualified as a donor for her daughter. At around the same time, Karine found out that Naélie’s illness was not genetic, but idiopathic — its cause was unknown. Given her young age and the speed at which the disease was progressing, there was a high risk that it would return after the transplant.

In August, further complications arose, and Naélie had to have a new catheter inserted, one that would allow her to do her dialysis treatment

THE FOUNDATION HAS LAUNCHED A NEW LIVING DONOR RECOGNITION PROGRAM Every year, living people donate one of their kidneys to help someone suffering from advanced renal failure who needs a transplant to regain their health.

Giving a kidney to provide a better quality of life to someone who is suffering is an act of great generosity, and we believe that it deserves to be highlighted.

A MEDALLION1 WILL BE GIVEN TO ALL LIVING DONORS AS A SIGN OF RECOGNITION

Living donation, a gift of life In 2018, we plan to recognize living donors. If you are a donor or someone who has had a transplant thanks to a living donation, get in touch with us so that we can recognize this gift of life.

Resource person: Philippe Vincent, Coordinator, Patient programs and services. Phone: 514-938-4515 or 1-800-5656-4515, ext. 222 – philippe.vincent@kidney.ca 1

Size of a 5 cents coin

Faced with the constraints, Karine decided to rent an apartment in Montreal because she couldn’t imagine travelling 300km three times a week, back and forth between the hospital and her home, near Quebec City.

Unfortunately, Naélie caught a cold the day before the operation, so it had to be cancelled.

A second attempt was made on November 27, and this time around everything went smoothly. Karine’s kidney was harvested at Royal Victoria Hospital, and the transplant took place at the Montreal Children’s Hospital, next to the Glen site.

THE DOCUMENTARY HUMAN HARVEST HIGHLIGHTS A MAJOR ORGAN TRAFFICKING SYSTEM IN CHINA On October 5 at UQAM’s Sherbrooke Pavilion, a special screening was held of the documentary Human Harvest, which sheds light on China’s gigantic organ trafficking system.

Thousands of organs on the market: in the early 2000s, how did China manage to offer any foreigner wanting a transplant the opportunity to have one within just a few weeks? Where did the organs come from? Prisoners? Members of the Falun Gong movement?

This disturbing documentary revisits the investigation conducted in 2006 by Canadians David Kilgour and David Matas, who uncovered an appalling, industrial-scale organ trafficking trade.

This investigation earned the pair the prestigious International Human Rights Award in 2009, as well as a nomination for the Nobel Peace Prize in 2010. The screening was followed by a discussion with David Kilgour and Dr Marie-Chantal Fortin.

David Kilgour, who was an Independent MP for 27 years, co-authored the investigation into organ trafficking in China with David Matas. He was Secretary of State, Asia-Pacific, in 2002 and 2003. Dr Marie-Chantal Fortin is a physician at CHUM’s nephrology department and a clinical professor at Université de Montréal’s faculty of medicine. Her work deals with the ethics of transplantation and organ donation.

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SPECIAL FEATURE – POLYCYSTIC KIDNEY DISEASE

POLYCYSTIC KIDNEY DISEASE, A MEDICINE AVAILABLE BUT EXPENSIVE Autosomal dominant polycystic kidney disease (ADPKD) is the most common hereditary cause of renal failure and the fourth most common reason kidney patients require dialysis.

The term polycystic kidney — polycystic means “several cysts” — was first used in 1888 by Félix Lejars1 in his doctoral thesis to describe the presence on both kidneys of cysts causing clinical symptoms.

The disease causes the formation of numerous cysts in the kidneys and may also affect the liver, spleen, vascular system, seminal vesicles and intestines. Affected kidneys can reach the size of a football and weigh up to 30 pounds each.

ADPKD is a progressive disease, meaning that it worsens over time. It is characterized by the presence of cysts and by kidney fibrosis. The formation of the cysts that characterize the disease begins in utero, and decades can pass before kidney function is affected. Patients generally experience no symptoms of the disease when they are first diagnosed. Symptoms generally begin appearing between the ages of 30 and 50. Between 45% and 70% of patients will see the disease progress to end-stage kidney failure before their 65th birthday.

The abdominal ultrasound is the main, standard method for diagnosing ADPKD.

Signs and symptoms The most common signs and symptoms of ADPKD are: • Hypertension (high blood pressure) • Urine concentration anomalies accompanied by minor polyuria (abnormally abundant urine) • Palpable kidneys • Microscopic or macroscopic hematuria (blood in the urine) • Recurrent urinary tract infections (UTIs) • Prolonged episodes of widespread back pain • Acute episodes of intense pain (caused by rupturing cysts) • Pain or feeling of heaviness in the abdomen or side • Shortness of breath caused by abdominal swelling • Early satiety • Tiredness and weakness Because there are other kinds of cystic kidney disease, the decisive factors leading to a diagnosis of ADPKD are renal hypertrophy, the presence of cysts on both kidneys and a family history of the disease.

Cysts may also be present on the liver.

Available treatments Jinarc™ (tolvaptan) is the first drug-based treatment available in Canada to ADPKD patients. The only other treatments for symptoms of ADPKD are dialysis and transplants.

Sources: The editorial content of this article was sourced from a number of documents published by OTSUKA Canada and the Canadian Society of Nephrology (CSN).

This article is intended for general information purposes only and does not constitute informed medical advice.

1.

Marie Louis Félix LEJARS (1868-1932) was a surgeon and professor of clinical surgery at the Faculté de médecine de Paris, member of the French Académie de Médecine and commander of the French Legion of Honour

DO YOU SUFFER FROM POLYCYSTIC KIDNEY DISEASE? Complete our survey available at kidney.ca/quebec. It aims to better demonstrate the impact of the disease on patients.

Thank you for your valuable participation.

INTERVIEW WITH DR. DANIEL G. BICHET, NEPHROLOGIST AT MONTRÉAL’S SACRÉ-CŒUR HOSPITAL What is autosomal dominant polycystic kidney disease (ADPKD)?

To begin with, it’s a hereditary disease, meaning that if one of your parents had it, you are at risk of getting it too. The cysts originate from the nephron’s tubules and compress healthy renal tissue. As kidney volume gradually increases, kidney function declines. The increase in volume can be measured using magnetic resonance imaging (Fig. 1). Renal failure reaches the end stage at around 55 years of age in type 1 polycystic kidney disease, the most common type. In the case of type 2 PKD, it’s after 70 years of age. Eight percent

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of dialysis patients suffer from hereditary polycystic kidney disease. Cysts can also affect the liver, and intracerebral aneurysms are more common among people with polycystic kidney disease than the general population.  DR. DANIEL G. BICHET

SPECIAL FEATURE – POLYCYSTIC KIDNEY DISEASE

Recognizing PKD in at-risk families using a renal ultrasound is straightforward. Other symptoms of the disease are high blood pressure, kidney stones, and blood in the urine due to hemorrhaging within cysts. Transplanted PKD patients have positive outcomes— the PKD will not affect the new kidney.

What is the incidence of PKD among the general population and how does it compare with other diseases?

An estimated 30,000 to 60,000 people in Canada suffer from PKD. It’s the most common monogenic disease and is more prevalent than all of the following diseases combined: Huntington’s disease, sick-cell anemia, cystic fibrosis, myotonic dystrophy and hemophilia.

Is there a cure for ADPKD? No, ADPKD cannot be cured. The only option is to detect the disease early via renal ultrasound, diagnose high blood pressure and cerebral aneurysms early on and treat them, and delay the onset of renal failure using tolvaptan as demonstrated via two randomized controlled studies published in the New England Journal of Medicine (Torres V.E., et al. N. Engl. J. Med. 2012;367(25):2407-18;Torres V.E., et al. N. Engl. J. Med. 2017; 377(20):1930-42).

Health Canada has approved Jinarc™, whose active ingredient is tolvaptan, as a treatment to slow the progression of ADPKD. Is the treatment effective? And what are the benefits and risks for the patient?

On February 25, 2015, Health Canada approved tolvaptan “to slow the progression of kidney enlargement in patients with autosomal dominant polycystic kidney disease (ADPKD). In ADPKD, increased kidney volume reflects the kidneys’ cystic load.” The European and Japanese regulatory bodies have also shared this indication since 2015. The US Food and Drug Administration (FDA) has called for further data, which has just been published in the REPRISE study, before ruling on this indication for tolvaptan in treating ADPKD. The FDA’s decision is expected in 2018.

Treatment using tolvaptan is effective: in the TEMPO 3:4 study, tolvaptan was found to slow the rate of decline in glomerular filtration by 26% (over a three-year period). In the REPRISE study, tolvaptan slowed the rate of decline in glomerular filtration by 35% (over a 12-month period). For optimum results, it is important to start taking tolvaptan in the early stages of kidney failure. Patients who take it have fewer cyst ruptures and fewer episodes of hematuria and kidney stones. Most patients who started tolvaptan as part of these research studies have continued taking it, and my centre has a decade of experience in its use.

The main side effect is caused by the drug’s mechanism of action: tolvaptan “blocks” the receptor of the antidiuretic hormone vasopressin. It induces polyuria, which increases urine production to between 6 and 7 litres per 24 hours, and increases thirst, called polydyspepsia, which compensates perfectly for the increased urine loss. It’s the blocking of vasopressin in the kidney that protects against increases in kidney cysts and the deterioration of renal function. No polyuria, no effect, so that fact needs to be accepted.

There are other diseases, such as nephrogenic diabetes insipidus, where the antidiuretic hormone receptor does not work.

These patients’ vasopressin receptor is blocked, so they produce 10 to 12 litres of urine in 24 hours. But overall, they adapt well.

While use of tolvaptan brings a risk of liver toxicity, this can be prevented through the monthly monitoring of hepatic enzymes during the first 18 months of use and then every three months thereafter. This monitoring is compulsory, and if the patient does not have monthly blood tests, the treatment is interrupted. In the presence of increased liver enzymes above a certain threshold, the treatment is interrupted and liver function always returns to normal, but this monitoring is vitally important, compulsory and rightly imposed by Health Canada.

Jinarc™ costs $30,000 a year. Do patients have to pay for it themselves?

Most private health insurance policies reimburse the cost of tolvaptan, and in Quebec, some patients receive an exceptional reimbursement after their file is examined by the Régie de l’assurance maladie du Québec (RAMQ), the province’s health insurance board. The REPRISE study showed that a patient with a glomerular filtration rate of 40% could delay the start of dialysis by three years. One year of dialysis costs $90,000.

In your opinion, should Jinarc™ be covered by RAMQ? Quebec’s nephrologists hope to be able to work with RAMQ to establish precise criteria for the use of tolvaptan based on the TEMPO 3:4 and REPRISE studies. Patients with ADPKD are the ones who will benefit most from this collaboration. No other drug slows the progression of polycystic kidney disease. In 2017, a group of Canadian experts published specific recommendations for treating ADPKD with tolvaptan. (Soroka S., Alam A., Bevilacqua M., Girard L.P., Komenda P., Loertscher R., McFarlane P., Pandeya S., Tam P., Bichet D.G. Assessing Risk of Disease Progression and Pharmacological Management of Autosomal Dominant Polycystic Kidney Disease: A Canadian Expert Consensus. Can. J. Kidney Health Dis. 2017 Mar 1;4:2054358117695784.).

Figure 1: Severity of polycystic kidney disease illustrated by an MRI image in which the tissue is replaced by white formations that represent hundreds of cysts; this image is an excerpt from the recent publication: Émilie Cornec-Le Gall, et al. JASN January 2018 vol. 29 no. 1 13-23 Conflict of interest: Dr. Bichet’s laboratory received grants from Otsuka Pharmaceuticals to conduct the TEMPO 3:4 and REPRISE studies. He is a member of the Otsuka Pharmaceuticals speakers’ bureau.

Dr. Bichet was not paid to write this text.

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VOLUNTEERING

DECEMBER 5 WAS INTERNATIONAL VOLUNTEER DAY As we do every year, we took this occasion to underscore the invaluable work of our volunteers, who are the cornerstones of the Foundation.

Their contribution is vital to the fight against kidney disease.

Without them and the hard work they put in helping the Foundation in countless ways, it would be impossible for us to fulfil our mission.

We are grateful to all these selfless people who invest generously and with great humanity.

PORTRAIT OF A VOLUNTEER: DANIEL TURCOTTE In Daniel’s family, four of the nine children have received the same diagnosis: glomerulonephritis, a degenerative disease affecting the renal glands.

They had to undergo a number of dialysis treatments and, in the end, required a transplant. Daniel had three, including one last November.

Daniel is a dedicated volunteer. As President of the Mauricie/ Centre-du-Québec Chapter, he works tirelessly for the cause despite all the life-saving treatments he once had to undergo — until his third transplant, Daniel underwent self-administered hemodialysis treatments at home while he waited for a compatible donor.

DANIEL TURCOTTE (2ND FROM LEFT), WEARING HIS CAP, PROUDLY CUTS THE RIBBON AT THE TROIS-RIVIÈRES KIDNEY WALK

Despite the challenges his disease imposes on him, Daniel has been heavily involved with the Foundation for over 10 years. The impact of Daniel’s work can be seen in the many public awareness and prevention activities he helps organize, and in other activities such as the Kidney Walk event, spaghetti lunch and Christmas party for patients

Thank you, Daniel, for your amazing loyalty.

WOULD YOU LIKE TO VOLUNTEER? We would be delighted to speak with you about the many volunteering opportunities available at the Foundation.

Contact Dany Babin: 514 938-4515 – 1 800-565-4515, ext. 232, or dany.babin@kidney.ca.

PLANNED GIVING | LEGACY GIVING SOCIETY If, like us, you would like to do something to improve the health and quality of life of people living with kidney disease, you can contribute in a very tangible way to fulfilling this mission, today and in the future, through planned giving.

Planned giving can take a number of forms, including: • Bequests and testamentary donations • The donation of a life insurance policy • The donation of securities

HAVE YOU CONSIDERED A TESTAMENTARY DONATION? A bequest to The Kidney Foundation of Canada is a gift that will have a lasting impact and bear witness to the values you cherish. | 10 |

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To find out how to make your own bequest, please contact Martin Munger at martin.munger@kidney.ca or 1-800-565-4515 / 514-938-4515, ext. 231.

E-NEWSLETTER SUBSCRIPTION

NOTICE OF 2018 ANNUAL GENERAL MEETING The Quebec Branch of The Kidney Foundation of Canada will hold its annual general meeting (AGM) on Sunday, May 6, 2018, at 9 a.m. at the Imperia Hotel Suites at 2935 De la Pinière Blvd in Terrebonne.

GO DIGITAL! The digital newsletter is a great way to receive all the latest news from the Foundation while getting all the juicy details about our events. Thanks for being a loyal reader! If you subscribe to the paper version of the Kidney Community Newsletter, switching to the digital version will help the Foundation save money by reducing production costs. Subscribe at kidney.ca/quebec.

Follow us on

at facebook.com/reinquebec

Members are kindly asked to register by April 2, 2018, by calling Jocelyne Renaud at 514 938 4515 or 1-800-565-4515, ext. 230, or by writing her at jocelyne.renaud@kidney.ca.

Vaccination,

the best protection

Vaccine against pneumococcal The risk of death from a pneumococcal infection is greater for people with certain diseases, such as renal failure.

To receive the pneumococcal polysaccharide vaccine free of charge, ask your CLSC or your doctor during your next visit.

You can receive the pneumococcal and flu vaccines at the same time. One shot in your lifetime is usually sufficient.

sante.gouv.qc.ca/vaccination/ 15-213-03A_pneumo_rein_3X5_ang.indd 1

2015-07-23 15:13

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La Division du Québec de La Fondation canadienne du rein2018

THE QUEBEC BRANCH OF THE KIDNEY FOUNDATION OF CANADA 2300 René-Lévesque Blvd West Montreal, Quebec H3H 2R5boul. René-Lévesque Ouest 2300, Phone: (514) 938-4515 • 1 800 565-4515 (Québec) H3H 2R5 Fax: (514) 938-4757Montréal • infoquebec@kidney.ca Tél. : (514) 938-4515 • 1 800 565-4515 www.kidney.ca/quebec

Téléc. : (514) 938-4757 • infoquebec@rein.ca

HOW TO HELP

www.rein.ca/quebec

 I would like to become a “friend” member of The Kidney Foundation of Canada, Quebec Branch, to support its mission of research, patient services, organ donation promotion and fundraising. I understand that this membership is free of charge and does not confer any right to vote, that the Foundation may communicate with me and that at any time I may terminate my membership on simple notice to the Foundation

POUR NOUS AIDER

Je souhaite devenir membre de la Division du Québec de I would likecanadienne to make a donation at The Kidney Foundation of Canada, Quebec Branch LaFondation du rein

2015

name le Bulletin et le Cahier Santé • Soyez informés de nos activités • Full Recevez Nom Address Adresse City Postal Code Ville Code postal E-mail address Oui, je suis âgé(e) d’au moins 18 ans et je veux devenir membre La Fondation canadienne du rein.

Phone  work  home  mobile Veuillez trouver ci-joint ma cotisation de membre au montant de 10 $.

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Aucun reçu officiel aux fins de l’impôt ne sera envoyé pour votre cotisation de membre.

DONATION FORM Les renseignements que vous nous avez donnés sont utilisés à titre administratif pour émettre des reçus fiscaux. Nous ne les conservons pas électroniquement.

Please find enclosed my donation for: S.V.P. m’envoyer le bulletin par courriel à l’adresse suivante :   $35la Fondation  $50  $100  Other amount (Je $20 fais aussi économiser des frais postaux)

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Cheque made TheàKidney Foundation of Canada.du rein Jesouhaite faireout untodon La Fondation canadienne  MasterCard Oui, je désire faire un don à La Fondation canadienne du rein. Veuillez trouver ci-joint mon don au montant de : ❒ Visa Credit card $ number ❒ 20 ❒ 35 $

❒ 50 $

❒ 100 $

Autre

Expiry

Contribution totale = Signature Date ❒ Chèque libellé à l’ordre de La Fondation canadienne du rein.

An official receipt for tax purposes will be issued for all donations of $20 or more.

Date d’expiration ❒ Visa ❒ MasterCard Numéro de carte de crédit  I would like to receive my tax receipt by email – I therefore understand that I will not get one by mail.

Signature  Please remove my name from your mailing lists.

Un reçu officiel pour fins d’impôt seraedition émis pour tout don de 20 $ et plus.  I would like to receive the electronic of the kidney community newsletter

Date

will use the information contained in this form to send you news about kidney health and advances in research, to keep you informed about the social issues surJeWe souhaite m’impliquer (SVPand indiquez-nous dans quelle région) rounding patient care, and notify you ofbénévolement our various outreach initiatives fundraising activities.

Montréal ❒IfAbitibi-Témiscamingue ❒ Estrieregarding ❒ Mauricie ❒ Montérégie ❒ Outaouais ❒ Saguenay-Lac-Saint-Jean ❒ Québec you would prefer not to be contacted any of the above, please call us ❒ toll-free at 1-877-361-4947. allow thirty (30) business your changes to be processed. retirer mon days nomforde vos listes d’envoi. ❒PleaseVeuillez Nous pourrions utiliser les renseignements contenus sur cette fiche pour communiquer avec vous dans une correspondance future, notamment pour vous signaler nos campagnes de financement.

Si vous ne souhaitez pas que nous vous contactions à cet effet, nous vous prions de nous appeler au numéro de téléphone suivant : 1 877 361-4947 Prière de nous accorder 30 jours ouvrables pour procéder au changement.

Votre don fait du chemin à La Fondation...