Broadcastability: Season 3, Episode 4: H. Atkins, C. Rush and S. Thyagu: A conversation about stem cell transplant for autoimmune diseases: English transcript: 

Titles: 

Introduction [00:00:00]:

Introduction to cell stem transplants [00:03:20]:

Guest introduction [00:04:44]:

Using autologous stem cell transplants for autoimmune diseases [00:08:08]:

Unit and team of physicians around Dr. Harry Atkins [00:12:26]:   

Stem cell transplant for cancer patients versus people with autoimmune diseases [00:14:38]:

Eligibility for a stem cell transplant [00:17:33]:

Sharing the knowledge to patients and medical teams [00:21:41]:

The popularity of CAR T treatments versus stem cell transplants [00:24:44]:

Efficacy of stem cell transplants for different autoimmune diseases [00:28:05]:

Patient satisfaction after a stem cell transplant [00:34:45]:  

The future of stem cell transplants [00:37:14]:

Choosing the “right” patient [00:40:05]:

Importance of the multidisciplinary team [00:42:24]:

Conclusion [00:49:13]:   

Introduction [00:00:00]: 

Dr. Harry Atkins [00:00:00]

It’s been very rewarding to be able to help people get back on track and watch how they thrive when they’re better.

Dr. Santhosh Thyagu [00:00:13]

It’s the team that makes a difference. Rather than being watertight compartments, the team that thinks and works together makes a big difference.

Chloë Atkins [00:00:26] 

Welcome to Season 3 of Broadcastability, a podcast by, for, and about people with disabilities.

Lark Huska [00:00:34] 

Broadcastability is a Proud Project production based in Toronto, Canada. Visit theproudproject. ca to learn more. 

This podcast was recorded and produced on the traditional and ancestral territories of the Huron-Wendat, the Seneca, the Anishinaabe, the Chippewa, the Haudenosaunee, and the Mississaugas of the Credit River. This territory is covered by the Dish With One Spoon Wampum Belt Covenant, a treaty made between the Anishinaabe, Mississaugas, Haudenosaunee, and Allied Nations to protect the resources of the Great Lakes and the surrounding areas.

This podcast was also partially produced on the territories of the Musqueam, Squamish, and Tsleil-Waututh peoples. We also wish to acknowledge the Indigenous nations across Turtle Island, also known as North America, where we conduct our research and record this podcast.

As a note to this episode, Chloe Atkins shares no personal connection to Dr. Harry Atkins. Their only relationship is as patient-doctor and their coincidentally shared surnames.

Chloë Atkins [00:01:40] 

This is a unique episode in the history of broadcastability. It’s unique for a number of reasons. Firstly, it has a medical focus in that we speak to physicians about their work trying to cure autoimmune diseases. This does not mean that we’re abandoning a social model of disability, but as someone with a disability, the quality of my medical care has an enormous effect on my everyday functioning. Therapies and medications influence how I feel physically and psychologically. I’ve found that healthcare which listens to me and responds to my self-identified needs, allows me to live a more full existence with fewer side effects and complications. And so medicine matters. Even as it does not define who I am, it can improve my functioning. 

Secondly, this episode is different because I have a personal stake in this interview, in that I’ve recently undergone a stem cell transplant with this medical team. I will quickly outline the context in which all this takes place. Last spring, in the spring of 2024, I learned that the procedures which have been keeping me alive for the last several years were no longer working. I have a rare autoimmune neuromuscular disease, myasthenia gravis, and my doctors told me that I had run out of treatment options.

Fortunately, as a university professor, I had access to scholarly medical journals, and so I had read a paper authored by a medical research team in Ottawa that outlined the treatment of seven patients with myasthenia who had been cured with stem cell transplants.

To be honest, I had long fantasized about the possibility of resetting my immune system. In my daydreams, I likened it to rebooting a computer when it malfunctioned. This metaphor has its limits, but the possibility of reconstructing my immune system so that it no longer attacked my neuromuscular processes was very alluring.

Introduction to cell stem transplants [00:03:20]: 

Chloë Atkins [00:03:20]

Before we start, I should quickly describe a stem cell transplant, which is also known as a bone marrow transplant. In this procedure, clinicians focus on stem cells in the bone marrow, which are responsible for producing all types of blood cells and parts of the immune system. Stem cell transplant is usually used as a treatment for patients with blood cancer such as leukemia, lymphoma, and multiple myeloma. 

There are two types of stem cell transplants: autologous and allogeneic. Autologous transplants use a patient’s own stem cells found in their bone marrow. An allogeneic transplant use stem cells from a matching donor. I underwent an autologous transplant, and so doctors harvested my own stem cells to give back to me after they destroyed my faulty immune system. The goal was to eliminate the flawed programming of my immune system. Doctors used chemotherapy and radiation to wipe out their system, and then they repopulated my body with my own stem cells. The hope is that the stem cells create a new immune system that no longer attacks my neuromuscular junction.

I underwent the transplant this past winter. It’s a lengthy process and one from which I am still recovering, but it seems to have worked. My myasthenic symptoms have either diminished or disappeared.

In this episode, I interview the three physicians who oversaw my transplant. We’re publishing the conversation because we want to share their perspectives on this little-known therapy for autoimmune diseases.

Guest introduction [00:04:44]: 

Chloë Atkins [00:04:44] 

These clinicians are Dr. Harry Atkins, an oncological hematologist, Dr. Carolina Rush, a neurologist who specializes in MS, and Dr. Santhosh Thyagu, a transplant hematologist. They all work at the University of Ottawa.

Now, thirdly and finally, what is different about this episode is my co-host, my non-binary child, Zephyr. They were my primary caregiver through the transplant, which meant that they spent five months with me in Ottawa. They also helped me interview the medical team, which oversaw my autoimmune transplantation. So, Zephyr, do you want to introduce yourself?

Zephyr Atkins-Mitra [00:05:19] 

I’m Zephyr. I’m currently finishing a bachelor’s degree in classics and early modern studies. I took time out of my degree to be Chloë’s primary caregiver. And, you know, as a result, I saw Dr. Atkins and Dr. Rush and Dr. Thyagu quite a bit. And I was greatly impressed with their care. And I was very interested in doing this interview and happy to facilitate it for Chloe and to get it out there.

Chloë Atkins [00:05:42] 

My family was absolutely key in me getting through this transplantation, but also this medical team was obviously fundamental. And so now we’re going to go ahead with the interview.

Dr. Harry Atkins [00:05:53] 

My name is Harry Atkins. I’m a transplant doctor at the Ottawa Hospital and the Ottawa Hospital Research Institute and the University of Ottawa. And I’ve been interested in transplants for autoimmune diseases for about 25 years now. And I’ve been able to get in on the ground floor, so to speak, and watch the field grow. Both here in Ottawa and in other places around.

Carolina Rush [00:06:27] 

I’m Carolina Rush. I was trained originally in Argentina, but came to Canada, had to redo my residency, and had… So I wanted to do MS my whole life, but slowly got into the field of MS and transplants and slowly into autoimmune transplants rather than MS or other conditions. Because of his mentorship and how passionate he was about how patients did. So slowly got involved in that sometimes patients come from out of town so it’s always good to , when we can see patients together rather than coming to separate locations so that has been working very well.  

Dr. Santhosh Thyagu [00:07:25] 

My name is Santhosh Thyagu. I am, like Harry said, a transplant physician and with the University of Ottawa. I recently joined this team. I come from Princess Margaret, Toronto. I’ve had an experience doing a stem cell transplant in a niche inherited disorder setting that gave me the joy of focusing on a small niche area within the broad field of bone marrow transplant. And I recognized how much of an unmet need is stem cell transplantation or cellular therapy in autoimmune disorders. And when there was a posting, I thought I could also apply. And, fortunately for me, they took me in and I’m part of the team. I am enjoying it.

Using autologous stem cell transplants for autoimmune diseases [00:08:08]: 

Chloë Atkins [00:08:08]

It really struck me when you said, in the middle of me getting a stem cell transplant, you commented on how much certain autoimmune diseases, mine in particular, myasthenia, can impact patients and affect their education and stuff. And you were the first physician that I ever heard understand the contextual sort of effect that these diseases have. I think there’s a, sort of a view that you control them and people sort of live quite well controlled, but that, in fact, may not be the case. But I’d love to know what inspired you to go ahead and pursue this.

Dr. Harry Atkins [00:08:42] 

I guess when I trained to be a stem cell transplant physician, I was very interested in how you could do an allo transplant, an allo donor transplant, and show that you could change the patient’s immune system to the donor type. And I wondered how that might affect other people using similar technology.

So, when I returned to Ottawa, my mentor had done a transplant for a patient with rheumatoid arthritis. And at that time, there weren’t the therapeutic options that are available now. And they were quite unwell with rheumatoid arthritis. And after the transplant, most of their symptoms had gotten better. And I wondered if we could do a similar sort of thing. And I have to say, I wasn’t the bright light that thought of this, but other groups around the world were starting to introduce the concept that, maybe, autologous transplant might be a good idea and help treat these resistant autoimmune diseases. And rheumatoid arthritis was the lead one at that time. And so, I was encouraged to do that by my mentor and worked with a rheumatologist here. And we devised a protocol and started to do transplants for rheumatoid arthritis.

Chloë Atkins [00:10:18] 

What year was that?

Dr. Harry Atkins [00:10:20]

So we would have started planning around 1996, 1997. And we actually did the first transplant in 1999.

Chloë Atkins [00:10:30] 

Wow. And so in terms of doing the transplants, just tell us, you might, for an audience or for somebody who doesn’t know, what’s the difference between allo and auto transplant? Yeah, so…

Dr. Harry Atkins [00:10:42] 

We can get hematopoietic stem cells from different sources. Autologous source means that we take it from the patient’s own body. Allogeneic means that we get the stem cells from a donor. The donor could be… a relative, so we call those a related donor transplant, or it could come from a volunteer bank, which we call unrelated donor transplants. Or the stem cells could come from, for instance, a cord blood bank where they’re harvested from the placenta and stored in a freezer until they’re needed.

Chloë Atkins [00:11:23]

I’m going to push you a little bit more, and that will open up to talking to these other two great individuals, is that how, in fact, did you create a context? You know, you had someone who was doing it. How did you create a climate in which it was accepted? How were in a public system? How did you get it pushed through in terms of all the bureaucracies and payments?

Dr. Harry Atkins [00:11:43] 

I think it is because of the wonderful mentor that I had who was the head of our transplant program here. So it was a different era and, you know, there wasn’t central control or watching over things. No one checked whether you were doing a transplant for leukemia or something else. We weren’t doing a large number of them at that time. And he was very supportive in pushing this ahead and giving me kind of the leeway to be able to start these studies.

Unit and team of physicians around Dr. Harry Atkins [00:12:26]:   

Chloë Atkins [00:12:26] 

So, on that note, you’ve got a team of some sort. Can you talk about both the unit and physicians who are part of the team or how you put it together?

Dr. Harry Atkins [00:12:37]

Yeah, again, I don’t think I did a lot. It’s by evolution, and so I met colleagues along the way that have been interested, helpful, and nice people to work with. And, you know, you start working together, and then you think, “Maybe we’ll just work together more.” We have the same interests and we have the same philosophy of caring for patients. And that’s really how the team came about—by natural evolution.

Chloë Atkins [00:13:19] 

I’m going to ask Carolina because you’re a different specialty than these two transplant physicians. From your perspective, how does that work, and how did you come into the team?

Carolina Rush [00:13:28] 

So, MS, when I started practicing MS, the treatments for MS were not very effective. So patients, you would see patients deteriorating over time with the… very sort of precarious treatment that we had at the time. But then the transplant with MS had made such a difference in patient’s sort of journey with MS that that was fascinating to see how these patients then gone from very disabled to being almost normal again and how we could sort of change their process with MS. And that’s how I got sort of involved just by coincidence in a way and then right as the other conditions expanded, I was also kind of, wow, sure, I’m happy to see these non-MS people, if you’re seeing them. And kind of, as Harry said, it’s, you know, we work well together, and now with Santhosh also, I think Santhosh was a perfect sort of click. In the last edition, we worked very well together, and it’s such a joy to work with these two. 

Stem cell transplant for cancer patients versus people with autoimmune diseases [00:14:38]: 

Chloë Atkins [00:14:38]

I’m intrigued. Both of you do transplants for cancer patients as well. What I’m wondering is, how is it different, treating a cancer patient with a stem cell transplant versus an autoimmune? It would strike me that it is a bit different, the experience, or am I wrong?

Dr. Santhosh Thyagu [00:14:58] 

So, basically, going one step back, autologous versus allogeneic, it’s not, as rightly said, it is the source from the same person versus a donor. But another element that comes there is the hammer, the intensity versus a cellular element. In autologous what we are doing is we are using a bigger hammer. We are able to give high dose chemo to control the disease process in that lymphoma and rescuing the person by giving stem cells. So stem cells just rescue the person from death. Because if you give very high chemo and you wash out the bone marrow, unless you repopulate, then hematopoiesis or blood formation cannot happen. So from that lens autologous transplant is a big hammer. 

In autoimmune diseases, we are not dealing with a malignant clone. So here, what we are doing is, we are eliminating the basic immune system that was acting against some parts of the body and then reintroducing the stem cells. So, that regenerates, and the regenerating or rebooting the immune system will not be angry towards those sites. 

So, basically, the amount of issues that deal in cancer, in treating a leukemia or a lymphoma patient with transplants, especially if it is an allogeneic transplant, we are dealing with not just the blood counts going down and the immune deficiency, we are dealing with a lot of graft attacking the host and loss of the graft and all of those issues. So in that sense, transplants for autoimmune diseases are different in those senses.

Chloë Atkins [00:16:33] 

And so is the experience for me getting the transplant; for me it was immediate. It’s not immediate for a cancer patient—the sense of difference, or is it when they get the transplantation?

Dr. Harry Atkins [00:16:45] 

So usually, when we see a cancer patient for a transplant, they are in remission, so their disease is controlled. Not always the case with patients with autoimmune disease. And so… The treatment, the transplant treatment often suppresses the immune system in a way that a lot of the autoimmune symptoms go away. Not everybody has that immediate improvement, but many of the patients do. It is a little bit dependent on which autoimmune disease and how active it is at the time of transplant and a number of other variables.

Eligibility for a stem cell transplant [00:17:33]: 

Chloë Atkins [00:17:33] 

So what diseases can you treat with stem cell transplant that are autoimmune?

Dr. Harry Atkins [00:17:38] 

We have really had three major pillars. So we’ve had neurologic autoimmune diseases. We have had rheumatologic autoimmune diseases. And less commonly, we’ve had gastrointestinal autoimmune diseases. And then, we have a smattering of people with other unusual diseases that come to be assessed because their treating physician has run out of options. Most of our transplants are done for multiple sclerosis. The second most common indication is a disease called scleroderma, a rheumatologic one. But then, we’ve treated a whole bunch of other rarer, less common autoimmune diseases.

Chloë Atkins [00:18:33] 

And so, when you’re coming to assess, at what point… I guess, what I’m wondering is, if you have one of these diseases and you’re listening to this, you sort of think, “If and when would I be eligible? Am I literally on death’s door? Am I totally non-influential? Wouldn’t it be better if I’m well, you know, relatively well, sort of as you say with cancer patients who are on remission?” So how do you assess, and do you think… What you do now might be different than might be in the future? Or how do you arrive at when a patient is eligible?

Dr. Harry Atkins [00:19:01] 

Again, it was the most advanced patients that we saw at the beginning, the ones that had no other options. And again, as we gain experience and as the referring physicians become more comfortable with the side effect profile and the outcomes of these transplants, we’ve been able to treat patients earlier in their disease course. And there are advantages. So we see, people are not as damaged by their autoimmune disease. Their bodies are not as damaged. And so they don’t get as many severe side effects on the whole. They can get through the transplant easier that way. And the outcomes tend to be better because you haven’t selected for a group of patients probably that are resistant to everything. 

And so there is variability in where and how we select people. We prefer early. We don’t always see patients at the time we prefer. And so we have to make a decision based on when the patient arrives to see us. And we do that, we have, again, that’s why we have a multidisciplinary team, with Dr. Rush, who provides us neurologic insight into the disease and helps us understand what causes the disease and how it’s manifesting and what damage it’s done.

Zephyr Atkins-Mitra [00:20:48]

I was just wondering, if you’re dealing with different diseases, do you bring on a consult? Dr. Rush is your neurological consult, but do you bring on a GI consult if you’re doing GI things, or a rheumatoid consult if you’re doing rheumatoid things?

Dr. Harry Atkins [00:20:59]

Yeah, so just like I work with Dr. Rush, I have Dr. Maltes, who is a rheumatologist with us. And she and I do a similar sort of combined clinic where we both assess. It’s not just me it’s Santhosh as well, where we both assess patients and decide together based on our conversations whether this is a good thing to do or a bad thing. And because those are the two most common, those are the doctors we interact with the most.

Sharing the knowledge to patients and medical teams [00:21:41]: 

Chloë Atkins [00:21:41] 

There are now all sorts of things for autoimmune diseases in theory. There’s biologics. There’s this, which not many people talk about. And frankly, I’ve put it out on a couple of myasthenia Facebook things just to… I don’t know whether you’re going to get some little pokes as a result. And then you also have CAR-T technology, which we can talk about. 

I’d love you… There’s a range of things. What I’m sort of stunned by a little bit is how people don’t know about this as an option. And they’re afraid of it, you know, they don’t… So how is that? How do you guys, I mean, Santhosh is going to be, you know, you’re thinking of retiring at some point. Santhosh is going to be taking over. But how do you get your message out, in a sense, to the broader medical community as well as the patient community?

Dr. Harry Atkins [00:22:31] 

So patients don’t have problems finding us. Physicians are more… conservative. And I think some of them know, but many of them don’t know, and that knowledge translation bit is the hardest part of the whole business, right, in the big picture. And we haven’t quite got the answer to that.

Chloë Atkins [00:23:01]

So do you find that if you’ve got a patient who’s done well and they come from another center, does that usually open the lines of communication with that center, now that they’ve gone back to looking after them?

Dr. Harry Atkins [00:23:13] 

Some. Sometimes that works.

Chloë Atkins [00:23:18]

So you’re the person doing it largely in Canada. Where else is it being done in the world?

Dr. Harry Atkins [00:23:23]

We see patients mainly from the eastern half of Canada. The group in Calgary has a similar sort of set up, and they’ve done quite a few autoimmune disease transplants. I understand that there are smaller programs that are starting in different places, like Quebec City and Winnipeg. And so, you know, the population is smaller, but when the need arises, they have the facilities.

The United States has a number of centers. Again, they have issues with how their healthcare system is structured, in providing treatments that haven’t been accepted into the mainstream—maybe that’s the best way to say it. So most of their transplants are being done for scleroderma right now. But Europe has a very robust community. Italy, Sweden, England, lots of other centers around Europe have programs for transplants for autoimmune diseases.

The popularity of CAR T treatments versus stem cell transplants [00:24:44]: 

Chloë Atkins [00:24:44] 

As someone who’s an autoimmune patient, the first thing I heard about was CAR-T as being the new thing. Funny that. So there is a push because there are patents involved with CAR T technology. I’ve talked to a number of people who think it’s great. A couple of neurologists in Toronto are really behind this. 

It’s an old technology, in a sense, stem cell transplant. It’s been around, you’re obviously improving it every time you do it, but it’s been around for a while compared to CAR-T. And yet it’s not as accepted, let’s say, in many clinics as CAR—T is.

Dr. Harry Atkins [00:25:17]

Yeah, so I think part of it is that older physicians still feel transplant is a last-ditch kind of, oh my god. So there’s a lot of that, whereas they don’t see CAR T-cells, so they don’t understand the toxicity involved with that. Yeah, so I’m going to be a little bit cynical here. So CAR T-cell trials are being pushed by big pharmaceutical companies who have billion-dollar research budgets, well, actually billion-dollar marketing budgets.

And they have the staff to go out and push these things ahead. Based on success in one disease, which is lupus, they’ve decided as a field that every other autoimmune disease is going to be tested because they need a market that’s bigger than lymphoma. And they make, I mean, the cheapest products are about…somewhere between a quarter and a half a million dollars per patient.

Chloë Atkins [00:26:27] 

And is that a one-off, or do they have to repeat it, patients with CAR-T?

Dr. Harry Atkins [00:26:30] 

No, so far it’s a one-off. But the follow-up is now just a couple years for the first patient. So we don’t know, and we don’t know how well it works in other diseases. And we don’t know the toxicity because there are so few patients right now that are highly selected to be, you know, to get through this. It’s a good technology. I think it’s going to be interesting to see how it pans out. But there are competing technologies that will have to be trialed against. Other B-cell depleting agents, monoclonal antibodies, bites. But it’s sexy because it’s a cell therapy and it’s a gene therapy. And so I think it gets a little cachet and a little pass from the medical community because of that. 

Transplant, you know, I use drugs that are probably 70 years old. They’re off patent. You know, there’s no big marketing budget. But we do know in the common indications that it works. It’s a one-time thing for many patients.

Efficacy of stem cell transplants for different autoimmune diseases [00:28:05]: 

Chloë Atkins [00:28:05] 

Have you ever had to do it again for patients?

Dr. Harry Atkins [00:28:08] 

So yes, for two patients. We’ve tried it twice.

Chloë Atkins [00:28:14] 

And do you have to go to Allogeneic or do you?

Dr. Harry Atkins [00:28:16] 

No, we did autologous again. And again, it was an autoimmune disease where the outcomes are not the greatest, but it’s better than the alternative. So again, in some autoimmune diseases, this is a really effective one-time treatment. In others, it’s the best treatment that we have, and maybe need to look at alternatives.

Chloë Atkins [00:28:48] 

If you’re looking at a list in descending order, where is it most effective with, to least in terms of just, I mean, off the top of your head, of autoimmune diseases?

Dr. Harry Atkins [00:28:57] 

Yeah, so the most effective, myasthenia. 

Chloë Atkins [00:28:58] 

I like that there. 

Dr. Harry Atkins [00:28:59]

Really, we’ve seen a remarkable success in that group of individuals. Multiple sclerosis, if we get them at the right time. 

Chloë Atkins [00:29:10]

And what’s the right time? Early? 

Dr. Harry Atkins [00:29:11]

Before too much damage. Neuromyelitis optica, another rare kind of neurologic autoimmune disease. Those are probably the most, where we’ve seen the best. We’ve seen good results in dermatomyositis, rheumatoid arthritis. Again, the patients that have come to us have been through all the autoimmune disease treatments. And so by the time they get to us, they have a lot of damage to their body. And so we can prevent new damage, but we don’t fix the old damage with this. And so the results are…are good, but I think they’d be better if we saw patients after they failed one or two treatments rather than after they failed a dozen.

Chloë Atkins [00:30:15] 

How do you get the message across to neurologists who are treating these types of diseases?

Carolina Rush [00:30:20] 

So that’s, yeah, so it’s been very hard. Most neurologists, as a specialty, are very conservative. And there’s still a stigma. Why would you subject a young person to chemotherapy, all the side effects, infertility, if it’s not a malignant disease? So there’s still that sort of taboo that, no, we should wait and try all the other pharmaceuticals. And also it’s a bit there’s so much as Harry was saying about marketing, right? Oh, this is the new MS drug! It should work, it’s better than the other one. So you cycle from drug to drug, hoping that the next drug will work, but sometimes it doesn’t, and you accrue disability because a new drug didn’t help. So it’s still very, you know, pushed up with pharma, with the newer treatments.

Chloë Atkins [00:31:13] 

So, in other words, it’s a hard slog.

Carolina Rush [00:31:17] 

It is, and as Harry was saying, we try to break ground with certain groups, and we’ve been successful, but other big groups, they haven’t, so it’s still disjointed.

Chloë Atkins [00:31:31] 

I mean, the patient groups, I can see a problem with that, even if you went to patient groups, is a lot of the patient groups are, in a sense, financed by Big Pharma. So I know I’ve been, and it is, to me, it seems a problem, and part why we’re doing this, is that to try and make it more public that this is a possibility. It also seems to me fairly cost-effective.

Dr. Harry Atkins [00:31:51] 

For some diseases for sure. It would, back-of-the-envelope calculation would show that it is really much better, a much more cost-effective way of treating people. Um, you know, there are pros and cons. 

So, you know, many of the MS patients still worry that their MS is gonna come back. And so that’s always a concern in their mind. So that’s something that now, we have experience, we can tell them, here’s what we would expect after a transplant. And it’s not a 100% cure rate, but we can outline how many people will have long-term disease control. 

But in the conversation, I think, you know, again, you have to be cognizant of the long-term complications of transplant. And so we’ve seen thyroid disease in our patients. And while that is maybe a less difficult problem to deal with than multiple sclerosis, it’s still something to think about. But it’s also the late complications that we think, you know, late-onset diseases of aging prematurely. So, you know, diabetes, hypertension, heart disease.

Chloë Atkins [00:33:26] 

And they head around what year usually after?

Dr. Harry Atkins [00:33:28]

Well, it… It isn’t like a defined thing, and we’re just starting to get patients out that far to be able to understand what happens 10 years, 20 years, 30 years down the road. And so, those issues, so we’re fixing the here and now, which is, couldn’t do that before.But what are the consequences down the road? And again, how can we mitigate those events? 

And so it’s not, you know, treat once and forget about your patient because they don’t have a disease. They still need ongoing preventative care and watching to make sure that things are good. And it’s not so, like again, if your patient is 50 or 60, maybe those long-term problems are less important to them or not…

Chloë Atkins [00:34:34] 

And if they were 40 or 30.

Dr. Harry Atkins [00:34:36] 

Or 20. So again. These are all kinds of still questions a little bit.

Patient satisfaction after a stem cell transplant [00:34:45]:  

Chloë Atkins [00:34:45] 

What is patient satisfaction like from most autoimmune people who go through this? Does it take a while? Do they, over the years, do they start to, does the glow wear off? Or does it improve? I’m just sort of, I’m wondering how that works. Because that also will contribute to that knowledge translation.

Dr. Harry Atkins [00:35:04] 

Most of the patients have been very happy. So, many patients have become reluctant, and they hem and haw and drag their feet. And then all of a sudden they have their transplant, and their myasthenia is gone, and then they’re like converts. They’re so glad that they had it done, although they were very reluctant at the beginning. And so, where it works, it works great.We’ve had a very good run of things where people have gotten better. Their myasthenia has disappeared. And only one where the myasthenia hasn’t gone away. 

Chloë Atkins [00:35:30]

That must be such a puzzle. 

Dr. Harry Atkins [00:35:31]: 

We’re still working, thinking that through. And again, how we play the immune system and how the immune system reconstitutes, It’s a funny thing. So when these autoimmune diseases relapse, it might not be the same disease. And we’ve had non-myasthenia patients that have had relapses that have been very easy to treat afterwards. And again, sometimes a one-time treatment puts them back into remission.

Chloë Atkins [00:36:33] 

And when you’re saying one-time treatment, is that like a medication?

Dr. Harry Atkins [00:36:36] 

Yeah, so an immune suppressant drug. And so you don’t know if that’s, well, did the redeveloping immune system have a little hiccup? And with time, it settles down again? Again, it’s so fascinating. It just points to how little we know about how the immune system operates. We don’t have great tools yet.

Chloë Atkins [00:37:04] 

So you still, even though it’s worked well and I’m a convert, you’re still on the cutting edge of what you know, right? You’re sitting on the limb, literal edge.

Dr. Harry Atkins [00:37:12] 

So many questions.

The future of stem cell transplants [00:37:14]: 

Chloë Atkins [00:37:14] 

What do you think the future of this is? Or, you know, in its best form, what do you hope for? Let’s just say that. What do you think?

Dr. Santhosh Thyagu [00:37:23]

So, I would pick up on from what Harry just said. The more we go into this, the more we realize that how little we know about these autoimmune disorders. And that also leads on to the question of transplant versus CAR-T, where the platform is that we know some things, but there’s a lot of things that we do not know. And in CAR T, it’s more pointed towards a specific type of lymphocyte, with the assumption that it is producing antibodies, and this antibody is the thing that causes the disease. Whereas in transplant, it’s a broader immune reconstitution.

So I think the future is more bright, because in CAR-T we do not know. It’s just very new. How long will it last? Will there be antigenic, will there be persistence of the T cells long enough? Do we need the persistence of T cells long enough? We do not know so many things. Only time will tell us. But at least, transplant, as Harry said, it started like, the first transplant that Harry did was in 1999. And we have had long-term, at least reasonably good, long-term follow-up of these patients. Many of them have remained in remission for long enough. I think the future is very bright for the transplant and a bit unknown from other domains. 

And as Dr. Rush said, so many new medications have come, but most of them have either tried to modify the manifestation of the disease or new medications to try to control the B cells or the immune cells that produce the antibodies. And CAR-T is a big brother of that. Whereas transplant is, as I said, is a broader immune reconstitution, I think with better… modalities or methods, supportive care, and other things to do. 

And for example, Harry was telling me about the choice how to choose the right patient, especially in another disease called scleroderma, that can affect the vasculature in the lungs and people with what we call pulmonary hypertension. And how they can impact the outcome of the transplants. And before we really recognize that some of the transplants were not very successful, ended up in a bad way, and then when we realized this is playing a big role in the transplant process. And when we started selecting patients based on the presence and the extent of pulmonary hypertension, outcomes became very safer. So the more we get to know things and the more we are able to choose the right patient at the right time, I think the future of transplant is very bright.

Choosing the “right” patient [00:40:05]: 

Chloë Atkins [00:40:05] 

So it really does matter how fit the patient is when they arrive for you, whether they’ll make it through the process in some level.

Dr. Santhosh Thyagu [00:40:13] 

The disease has an indication, and the patient should be the right candidate. So the ideal disease, which has a good indication, plus the candidacy of the patient. The selection process, the right patient for the right disease for the right modality. 

Chloë Atkins [00:40:28] 

So it’s not like we’re trying to get into Harvard, but what’s the percentage of people who come to you that you accept versus the ones you reject?

Dr. Santhosh Thyagu [00:40:36] 

So each, I think my experience in autoimmune diseases is not the biggest, but from what I’ve learned from Harry and the team is that each disease has a certain… window, sweet window where it is not too early or it is not too late that fixed events have happened which cannot be reversed. So in scleroderma, there are certain parameters where the disease is not too advanced that there is no benefit. In multiple sclerosis also, it’s the relapsing, remitting, where there is active inflammation happening. Whereas if it is the primary progress or the secondary progress where events have happened and now it’s taking, the deficits are becoming more but inflammation has sort of settled down. Those patients by doing, by reconstituting the immune system and resetting it, it doesn’t help because the immune attack has already happened.

Chloë Atkins [00:41:31] 

So you want to do it earlier in MS rather than later, in that sort of remitting part of the MS. That’s fascinating. And you’ve just learned that through just the process of what you’re going through.

Carolina Rush [00:41:45] 

The earlier that you have MS, the more, the easier or the more complete the recovery is. So the longer you have MS, the more chance that your deficit stays the same.

Chloë Atkins [00:41:54] 

Because the damage is there, it’s locked in already.

Dr. Santhosh Thyagu [00:41:56] 

It’s an active immune system that is attacking the site and causing damage. As long as the immune system, the activity of the immune system is the driver, you reconstitute the immune system and it is more accepting, accommodating immune system, so further attacks don’t happen. But if already the damages are already done and you are seeing the ongoing deficit, but active inflammation is not there, by reconstituting the immune system, you are not doing it. The virus has already left the station.

Importance of the multidisciplinary team [00:42:24]: 

Chloë Atkins [00:42:24] 

It’s more than a doctor team that you’ve got. You’ve got multiple specialties. Can you guys talk a little bit about that and what role that plays in this? 

Dr. Harry Atkins [00:42:34] 

It wouldn’t be possible without the large team that we have assembled. And the team on the ward has mainly been assembled to treat patients going through transplants for leukemia or lymphoma or myeloma. And they’ve got the special nursing skills to nurse patients. And, you know, it’s quite an intensive job because patients can get very sick. And even if they don’t get sick, they’re there for a long period of time. I would have to say they’re wonderful because they’re so supportive and caring for the patients. And they get very attached. And sometimes that’s hard when the patient relapses or dies from a complication. 

And we also have a very good physiotherapist. And she kind of provides a lot of enthusiasm up there to get people back on their feet. A great dietician who helps provide advice and gets people to eat when they don’t really want to. The pharmacist because we use a lot of drugs and so many of them interact. So many of them have narrow windows. So they’ve been an invaluable part of the team.

Chloë Atkins [00:44:11]

I also thought what was interesting is that you also have two other physicians who rotate to put out fires in some sense.

Dr. Harry Atkins [00:44:18] 

We have our clinical associates and physician assistants who do the day-to-day management of our patients. They help care for all the needs of the patient when there are so many little pieces of data that you need to look at every day. They take care of the things that need to be taken care of. And that allows the more senior staff, to kind of direct things and provide guidance to the bigger picture.

Chloë Atkins [00:45:06]

Was that difficult to set up or was that not so difficult to set up?

Dr. Harry Atkins [00:45:11] 

In some ways, yes, because it’s hard to find the right people who want to do that. It’s a little easier now because younger physicians recognize this as a career path.

Dr. Santhosh Thyagu [00:45:26] 

So one thing was, when Harry said as you asked him about how did you made it a big success and the amount of support he got from his mentor. The same thing I am experiencing is like: if there is a hierarchy where there is a lot of psychological distance, then the program will not succeed. Here, I have the freedom to ask him any stupid questions that I have and he won’t be judgmental. He will tell me what is where. And that sort of a freedom to ask questions and freedom to explore things and the collegiality. So the mentorship is something that is very important for new people to grow into that space.

Chloë Atkins [00:46:06] 

If you wanted people to know something about what goes on here and what goes on in particular with autoimmune diseases and transplantation, is there something you’d like to say?

Carolina Rush [00:46:14] 

You can see how other people care for the patient, they’re passionate, and you can see how, for sure, personality plays a role, but sometimes you have to negotiate and kind of… In the sense, it’s a bigger center. They have bigger… A hospital is more disjointed than here, right? That we’re kind of closer, maybe, like, physically. So that also has helped, I think.

Dr. Santhosh Thyagu [00:46:39] 

It’s a team that makes a difference. Like, rather than being watertight compartments, the team that thinks and works together makes a big difference. Because it’s not like one can master or one can try to be efficient in multiple domains. So, a neurology transplant, we do the transplant, Dr. Rush is always there and she sees the patient on a daily basis. So, if something is going down in the neurology domain, we can always depend on, we know that she would already have acted on that. If it’s a transplant domain then she could ask. So it’s a team. I think the team is a big thing here.

Dr. Harry Atkins [00:47:18] 

Well, from a professional point of view, this was just the best thing ever because you get to learn wonderful things about how the body works and doesn’t work and how to fix it. And I get to learn from experts. I get to learn from Mindy about neurology, never one of my strengths. I get to learn from Nancy, rheumatologic issues. I learned from Santhosh because he knows so much about allotransplants. And so working so closely with people, you pick up and you’re always in a learning environment which is always stimulating. You know it’s such a, you know, like they actually pay me to do that. It’s like such a wonderful thing. 

From a patient perspective, it’s been very rewarding to be able to help people get back on track and watch how they thrive when they’re better. And sometimes, there have been instances where patients come to me and I’m kind of skeptical about it. And they are very much their own advocates. And after reflection, we go ahead. And I’ve always learned from that situation as well. And I think keeping an open mind and listening to everybody is a very important part of this whole endeavor.

Conclusion [00:49:13]:   

Chloë Atkins [00:49:13] 

We ended the interview on the topic of teamwork and mentorship. As someone who has had a lot of clinical contact, it was apparent that this team functions differently than most other hospital units. Usually, a hospitalized patient has one primary physician. And if another specialty is needed, in deference to professional roles and capacities, a consultant doctor visits and examines the patient and writes up a consulting note, which suggests possible therapies or treatments for the primary physician to undertake. That consulting clinician only returns if another problem emerges. 

The Ottawa autoimmune transplant team works differently and together. They see each other regularly. When I returned home after the transplant, one of my regular doctors asked me how often the neurologist saw me on the unit during the transplant process. When I told him every day, he was stunned and commented, wow, that is amazing. So, Zef, what do you make of our conversation and of the whole stem cell transplant?

Zephyr Atkins-Mitra [00:50:10] 

I really liked doing this interview, and I’m glad that we’re putting it out there. Firstly, I hope that, like, hearing about this team’s approach and hearing about this procedure proves useful to listeners who have autoimmune diseases, who have family or friends who have autoimmune diseases. Or even if clinicians who treat autoimmune diseases hear this, I really hope that this helps them. Yeah, it changes their perspective. It helps them understand, like, how this team is doing things. 

I also generally, like, when I was a caregiver for you, like, when we were doing the transplant in the hospital, I felt like this team, I also felt like it felt very different to a lot of the other medical care that I’ve seen. The, like, sort of physicians who were at the head of things, Dr. Atkins, Dr. Rush, Dr. Thyagu, they were very involved and very collaborative in a way that I hadn’t seen. 

But I also, I mean, I also want to sing the praises of the other attending physicians who were on that unit and the nurses who were very understanding of my role as a caregiver, I feel like. And I never felt like dismissed or anything because I, they never dismissed that I might have some kind of like expertise or whatever. They would look to me at least implicitly to like, you know, approve things or get my opinion on what was happening. And I mean, you know, oftentimes I would approach it with like, you know, I’m not a medical professional. I trust what you guys are doing. But feeling seen in that way, I think, was very important to me and really helped my experience there and my opinion of that team. So I really like doing this interview and putting it out there, even just to say, these guys are great. Look at what they’re doing.

Chloë Atkins [00:51:55] 

I want to thank Drs. Harry Atkins, Carolina Rush, and Santhosh Thyagu for their time and for sharing their invaluable knowledge and insight about undertaking stem cell transplants for patients with autoimmune diseases.

Lark Huska [00:52:11] 

This episode of Broadcastability was hosted by Chloe Atkins, a professor at the University of Toronto and an anti-ableist researcher. This episode was also edited by Lark Huska. Isabel Avakumovic-Pointon created the artwork and Justin Laurie composed the music. Broadcastability can be found on Apple Music and Spotify and at broadcastability.ca. Broadcastability is a Proud Project production based in Toronto, Canada. Visit theproudproject. ca to learn more.