Organ Donation and Transplantation in Canada — Dr. Matthew Weiss and Sylvie Charbonneau

Alex Maheux

Hello, and welcome to the Canadian Health Information Podcast. I’m your host, Alex Maheux. In this program from the Canadian Institute for Health Information, we’ll be analyzing Canada’s health systems with qualified patients and experts. Stay tuned as we’ll go beyond the data to learn more about the work being done to keep us healthy. 

The COVID-19 pandemic has complicated almost every element of our health systems, but one of the areas most affected is organ donation and transplantation. A new CIHI analysis shows that the percentage of people in Canada who received a transplant decreased by 14% in 2020. Today we are joined by Dr. Matthew Weiss, a pediatric intensivist at the CHU in Quebec City, who specializes in organ donation, and by Sylvie Charbonneau, president of the Kidney Foundation’s National Board, who is also a living kidney donor for her son, Benoît. We’ll talk about the challenges being faced in this field of work and about what every Canadian should know. 

Hello Matthew and Sylvie, welcome to the podcast. 

Sylvie Charbonneau

Hello. 

Matthew Weiss

Hello and thank you. 

Alex Maheux

Matthew, I’ll start with you. You are a physician specializing in pediatric critical care, and you are also a researcher specializing in organ donation and transplantation. To help our listeners better understand the transplant system and perhaps why it is more difficult than one would imagine, could you explain a little bit about the biggest challenges right now in the field?

Matthew Weiss

Well, there are definitely more challenges. As you know, there are hundreds of Canadians every year waiting for organs. Most frequently kidneys, but also other organs such as livers, lungs, hearts and pancreas. The main reason there are people waiting is because of insufficient donors. Donors are rare; somewhere between 1% and 2% of hospital deaths are eligible for solid organ donation. So, the pool of potential donors is very limited and it is very critical to identify all of these donors and coordinate with organ donation organizations. 

After that, there are always difficulties associated with finding a recipient who is compatible with the organs that are available. There is a lot of back and forth when it comes to data. Organ donation is probably the health system area where there is the most interprovincial exchange. It is extremely rare that someone will be sent from Quebec City to Manitoba to be treated for their heart condition. This almost never happens. But every day, we at Transplant Québec receive calls from other provinces to exchange organs. That also complicates the situation. It’s a lot of logistics, the coordination of flights, operating rooms and so on. So that, that scratches the surface of the issues we’re facing in the transplant donation system, but we can discuss it in more depth if you want. 

Alex Maheux

There are a lot of issues. Sylvie, you are also involved in the field professionally, but you have also been involved personally, unfortunately. Can you tell us about your family’s experience with organ donation and transplantation? 

Sylvie Charbonneau

Yes, of course. I have 2 children, a boy who is now 39, and a girl who is 36. They were perfectly healthy growing up. My husband and I have always said we were lucky in that respect, having 2 young athletes who did a lot, a lot of swimming. And at some point, at about 22, 23 years old, our boy had a case of high blood pressure. He had to go to the emergency room, and by that time the doctor had told him that he didn’t like his blood count very much; he was worried about his kidney function. And that’s how it stayed. 

Then, at about 27, he had a lot of pain in his abdomen. He went to the hospital and was diagnosed with a congenital kidney disease. But kidney disease is silent. Patients only find out once it’s too late. His kidneys were functioning at 25% and doctors told him at the time that he was inevitably headed for dialysis or a transplant. So I volunteered to give him a kidney. In fact, my husband and I were both found to be compatible. But for many reasons, I was the donor in the end. So, in December 2012, I gave him a kidney. The procedure went very well. Donors have to be healthy. So I had to undergo medical examinations, and the process took about a year. So everything went well, he resumed his life more or less normally, with a much less restrictive diet. Before the transplant, sodium, potassium and proteins had to be monitored closely because kidneys are basically like a swimming pool’s filtration system. When they don’t work, all the junk, in a sense, goes into the pool water. There are lots of things that are good for us, but when the levels get too high, it gets harmful. 

In fact, at one point, Benoît ended up in the hospital because his potassium levels were so high that he was at risk for cardiac arrest. When you’re 29 years old and you’re told that you could have a cardiac arrest in the next few hours or days, it’s not very reassuring as a young person, and it’s very worrying for the parents. You shouldn’t think about death when you’re that age. 

The transplant went well for several years. Unfortunately, last year he had a chronic rejection. He developed antibodies that attacked the kidney I gave him, which means that both his kidneys haven’t worked for a while now. The kidney I gave him is functioning at about 10% and he’s been on dialysis since June. We hope to get another donor. We tested several people in our close family, because it is often the easiest way to find someone compatible. Unfortunately, because of his antibody level, no match has been found. Both my sister and husband volunteered and passed all the tests. They qualified to be donors and will be part of the cross-donor program in Canada. 

So, as Matthew mentioned, this is one of the places where there are interprovincial exchanges between health systems, called paired donations. That would mean finding a pair outside of Quebec where the donor is not compatible with their recipient but is compatible with our son, and either my sister or husband would be compatible with the recipient, and they would do an organ swap. It is a chain of transplants that we do across Canada. We are hopeful that in the next few years we will be able to find a donor this way, because we hope to be able to get him off dialysis. He does dialysis at home. Every night, for a minimum of 8 hours, he is connected to a machine that filters his blood. That’s it. 

Alex Maheux

It’s a lot for you, for your family and for Benoît. I can’t imagine how hard it must be for your family. I’m curious, though, because you’ve now had to experience this twice and this second time during a pandemic. There has been a lot of pressure on our health systems: thousands of surgeries were cancelled and fewer organ donations were happening. How different was the experience this time around? 

Sylvie Charbonneau

In fact, there are 2 things. At first, Benoît was extremely cautious because his immune system is compromised due to the anti-rejection drugs he is taking. So he is much more at risk during the pandemic. He lives with his family, his girlfriend and her 3 teenagers. So before the teenagers were vaccinated, it wasn’t always reassuring, I’ll put it that way. He has limited his travels and visits. And then another factor was that it took me a year to get qualified as a donor. For my husband, it was even longer. As for my sister, it went a little faster once she got into the system, but it was hard to get her to have her first tests, because in the centres that do assessments of potential donors, the nurses were busy dealing with the pandemic, and it was the same with doctors. So, we’ve had our ups and downs regarding our expectations. The fact is we’re still in the pandemic, despite the fact that Benoît is vaccinated and has had his third dose. It’s always a concern, because these are people whose health is more fragile. We’re always worried. 

Alex Maheux

Matthew, when you hear about Sylvie and Benoît’s stories, what are the problems and barriers in the system that we need to overcome to make sure that people like Benoît have access to the organs they need?

Matthew Weiss

To tie it in with what is possible with an organization like CIHI, I think one of the most important lessons we learned during the pandemic is the importance of data, and data that was not readily available here in Canada. As Sylvie just mentioned, the pandemic turned the entire health care system upside down, including the transplantation system. But what still isn’t obvious, even during the pandemic, is why. It’s easy to know that we had fewer transplants. That is easily measurable. But did we have fewer transplants because we had fewer eligible donors? Has the consent rate decreased? Was it because we were putting fewer people on wait-lists? These subtleties are important, because to address the issue, you have to know where to put the resources. Because if the consent rate has increased but there are just fewer eligible donors, well, there’s not much we can change about that. But if fewer people are saying “yes,” then we raise awareness, we can put resources into improving our consent rate. So it’s very important to have an agile and up-to-date system to be able to respond to needs. 

Sylvie Charbonneau

I would like to add that I think the pandemic has brought some good to living donation. For example, I have a brother who lives in British Columbia. He is not compatible, but if he had been, he would have had to travel to Quebec to give Benoît a kidney. With the pandemic, there was an experiment to move organs rather than people. I think this is something we learned during the pandemic, which will make some people not want to become donors because of the transportation and the costs that go with it. But the fact that we are operated on close to home, that we don’t need to travel, that we can convalesce close to home and that the organ travels, I think that this will be an element that will increase living donation. I’d like to mention 2 other things that I think are not related to the pandemic but may be related to consent. 

I don’t know if Matthew has the data, but I’ve heard numbers about families refusing the donation. If a person dies and their consent card is signed, their family can still refuse to donate their organs, even if the person has consented to do so. I had heard a figure of around 30%, but I’m not sure if that figure is up to date. There are many people who don’t know that we have to tell our loved ones that we want to donate our organs, otherwise it might not happen. But I think that diminishes the pool of potential donors. 

I have given several conferences, several testimonies following my donation and one of the questions I have been asked most often is “what is the impact on you? Are you taking any medication? Do you have a special diet?” And I think there are people who are afraid to give, because they feel like it’s going to impact their lives. And my answer to that is there was the recovery, and there were medical tests for a year, which is sort of a gift, because I would never have had such thorough medical exams had I not donated a kidney. I had a convalescence period, but now I don’t have any special diet and I don’t take any medication. I am 65 years old, I do not take any medication and I still do lots of sports. It had no impact on my health and on my life. So the impact for the donor is for a short period of time, to be tested and then to recover. I don’t think we talk about that enough either. If we talked about it more, maybe more people would come forward to be a living donor. 

Alex Maheux

Certainly. You talk about impacts. I would also like to talk about the other 2 sides of the story. The impact on the patient, specifically the impact on patients who are on a wait-list, who are forced to wait for an organ, which has a big impact on the patient and the family, but also the impact on our health care systems when a patient is on a wait-list. 

Matthew Weiss

The most serious impact, of course, is deaths. In 2020, there were approximately 275 Canadians who died while on wait-lists. And even that is probably not everyone who should be counted, because unfortunately there are people on the wait-list who become so ill that they are taken off the wait-list before they die, because they are too ill to receive an organ. So the real number, we don’t even know exactly how many people can be helped. But as you say, that’s the most serious outcome, but there are plenty of other negative effects. As Sylvie just mentioned, people who are waiting for kidneys are on a dialysis machine for 4, 6, 8 hours a day. It’s almost impossible to get a job, let alone a demanding job. These people do not participate fully in society, whether economically or personally. Donation and transplantation are one of the few examples in the health care system where you can save both money and lives. Often, you can pay for a treatment and it will cost, but the impact is that you save lives and years of health. Organ donation allows us to free these people from dialysis or other treatments for failing organs, and it also saves money in the system. Yes, it’s an investment. It costs money to have transplant surgeons, to have education programs to reach every donor, but it pays off in the end, for sure. So, Sylvie, I don’t know if you want to add anything. 

Sylvie Charbonneau

Well, I agree with Matthew. These cases are definitely more about kidneys. As for other organs, there are almost no palliative means, and if there are, well, they are very expensive. Then, there are indeed people who die while they are on the wait-list, and that is extremely unfortunate. In terms of dialysis, the treatment costs about $80,000 a year. There are also financial impacts. It jeopardizes health, because dialysis is hard on the body, and it also shortens life expectancy, whereas someone who has had a transplant, well, it’s the cost of the operation and then the cost of the medication every year, and that’s much less expensive than $80,000 a year for years. Let me give you a very concrete example. 

When I underwent all my tests, I was saying earlier that we — it’s always strange to say “we” — but we had surgery in December 2012. My son’s nephrologist said if he didn’t get a transplant before Christmas, he would go on dialysis in January. Well, to speed up the process, among other things, I had to have a colonoscopy. In the health system, there was a year and a half wait. I went through private health care and paid $500. I didn’t mind paying because I had my colonoscopy within 10 days and that meant saving a year’s worth of dialysis for Benoît. So it was $500 for a test versus $80,000 for a year of dialysis. The business case is not difficult to make. Transplantation is much better for the quality of life, and is more profitable for the health system. 

Alex Maheux

Sylvie, we’re talking about the impact on our health systems and on the physical health of the donor and the recipient. What about the mental health impact for your family and for Benoît — it must have been and must be really hard. How are you coping? 

Sylvie Charbonneau

Thanks for the question, Alexandra, because it is indeed a family issue. Because it’s both mother and son who are going to have the surgery. I have a husband, and a daughter who has 2 small children. We were always worried. Benoît would call me to say he had a cold and I would say “are you okay?” I am always worried that things could get worse and that his health will deteriorate. And I remember my daughter telling us, at the time she was 27, that she was going to get tested, too. My first reaction was that I didn’t want her to. When she asked me why I didn’t want her to get tested, I told her I couldn’t imagine my 2 children on the operating table at the same time. As a mom, I thought I would be too anxious and too stressed. I couldn’t imagine that. When I told her that, I realized that for her and for my husband, it meant having a mom and a brother or a wife and a son on the operating table at the same time. There are repercussions on the family, because we are worried, we are very worried for the person who is sick, but we are also worried for the person who is going to undergo all the tests and then be on the operating table at the same time. It’s 2 members of a family of 4. That’s 50% of the family that’s involved in this directly, that’s going to have surgery. 

There is also the recovery afterward. But I had an extraordinary family. When I was recovering, my daughter would take days off and walk with me to encourage me to regain my energy. My husband did the same thing. So it’s really a family thing. Everyone in the family is affected by this. 

Alex Maheux

I can’t imagine how hard it must be for your family. 

Matthew, let’s talk about solutions. You are part of a few advisory groups to discuss the challenges facing data collection, specifically technologies that would help in the organ donation and transplantation system. What is the state of our data now and what do we need to do to improve life-saving decisions at the end of the line?

Matthew Weiss

We can divide this into solutions that involve more donations, more transplantations and more living donations. Because it’s 2 slightly different categories. The data requirements are different too. Of course, the donation side of things is complicated, but at the same time much simpler than the transplantation side, and that’s because the donation data, such as referrals for a potential donor, all go through provincial organ donation organizations, and there are just 13 in Canada. There are some who already share a common software platform. Obviously, they can’t easily connect with one another, but it’s CIHI’s and Canada Health Infoway’s job to help this happen. But some provinces do not have this software solution. Their data is either on paper or in in-house systems. Ideally, everyone would have a technical solution to easily share data, and everyone would have the same definition. Is the definition of a potential donor similar in Ontario, in Manitoba and in Nova Scotia? It’s a big challenge. These are the types of solutions that are currently being sought by CIHI and Canada Health Infoway, so that everyone has the same definitions and the same technological platforms. 

When I say the problem is bigger on the transplant side, it’s because the transplant programs are all hospital-based and there are dozens of them across the country. Hospitals often have in-house systems and different software with varying data. Ideally, we would want to be able to relate different types of donors to different types of recipients, and correlate that to the functions of the transplanted organs 1, 3, 5 and 10 years later. But this data must be stored in a way that allows sharing and also make sure the definitions are standardized. So that’s the big challenge across the country. I would say these are the main challenges. 

Alex Maheux

Are there also perhaps policies across the country that could help advance these technologies and systems? 

Matthew Weiss

Data sharing is big. We are all aware, we understand the laws governing confidentiality and privacy for patients. We will never share, let’s say, data with companies, businesses that will try to make a profit with a patient’s private data. At the same time, it is the exchanges between the provinces with organizations in transplants like Transplant Québec or BC Transplant in British Columbia. But it has to be facilitated, because the only way to maximize the usefulness of a potential donor, either living or deceased, is to find the right recipient who is a match. Still to this year, some donation coordinators are forced to send faxes to various provinces, because we’re not on the same platform. You would think that if I had a potential donor it would be as simple as to enter the data and hit a button to send the information all over the country, but it’s not always that easy. So, it’s about facilitating policies that allow for data exchange between agencies. This is fundamentally important. 

Alex Maheux

I have a question for both of you. Sylvie, I know that you are very involved with the Kidney Foundation. But from a patient’s point of view, what would you like to tell the doctor? Next, Matthew, what message would you like to give the patient from your side of things?

Sylvie Charbonneau

Oh, boy. What I would like to talk about with a doctor who is doing a transplant or evaluating a recipient or a donor, even though I know they are aware of this, is the waiting time. The wait is very hard. The time it takes to test a living donor, the time it takes to test a recipient, because the recipient is also being tested, the anxiety that it causes, the stress that it causes. If we had the data and then the medical teams got together, maybe if there was better coordination, we could get through the process faster. The waiting is really, really hard. Of course, you know, we are 1 patient out of many that these doctors see, but it is difficult for the patient, the donor, it is difficult for the recipient, it is difficult for the family. So the more we can focus our energy on reducing time spent on the wait-list or doing tests for a living donation, the better it would be for everyone. 

Alex Maheux

Matthew, do you have a message for the patients, something you don’t always have the opportunity to talk about?

Matthew Weiss

Well, I just want to echo a point that Sylvie made earlier, which is to talk about organ donation with your loved ones. The moment you are a potential donor but you are unconscious, you have a big injury and you are not able to speak yourself, if your loved ones know that organ donation was important to you, that decision is already made. There will be so much more do deal with. It’s very emotional dealing with a person having a serious injury and being in a coma. It’s not a time to debate organ donation. You want there to be at least 1 decision that’s simple, it’s done, and that way you can focus your energy elsewhere to make the other decisions that are all upsetting and difficult. 

Sylvie Charbonneau

I totally agree with Matthew. I think one of the important messages to families is to talk about it beforehand. Because while you’re in a critical situation, emotions take over and then it’s not the time to talk about it, you don’t feel like talking about it. So, it’s important to make sure our families are notified before an event happens. And talking about organ donation doesn’t kill you. 

Matthew Weiss

My wife obviously supports it, but I told her if she says “no” to me donating my organs, I would come back to haunt her. 

<laugh>

Sylvie Charbonneau

It’s funny, Matthew, because I said the same thing to my family. I will come and haunt you for the rest of your life. 

Alex Maheux

On that note, Sylvie, thank you for sharing your story with us. Our thoughts go to you and to Benoît. And Matthew, thank you for being here to help us better understand the system and how we can move forward. 

Matthew Weiss

Thanks to you. 

Sylvie Charbonneau

Thank you. It is a great gift. A beautiful gift of life. Thank you. 

Alex Maheux

Following the recording of this interview, we received the wonderful news that
Sylvie’s son, Benoît, received a kidney transplant. We wish Benoît a good
recovery and send our best wishes to the family.

Alex Maheux

Thank you for listening. Come back next time when we will be discussing other exciting health topics. To learn more about CIHI, visit our website at cihi.ca. If you enjoyed our discussion today, subscribe to our podcast and follow us on social media. This episode was produced by Meghan Foreman, and by our executive producer Jonathan Kuehlein. I’m Alex Maheux. Until next time!

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