Latest / EHA Unplugged / Life After CAR T-cell Therapy: Jonathan Clark’s Journey with Mantle Cell Lymphoma and the Future of Patient Advocacy

Transcript

Life After CAR T-cell Therapy: Jonathan Clark’s Journey with Mantle Cell Lymphoma and the Future of Patient Advocacy · EHA Unplugged

• 0:07
  Greetings and welcome to EHA Unplugged, the official podcast
• 0:11
  channel of the European Haematology Association EHA.
• 0:15
  Hi everyone, and welcome to EHA Unplugged EH as podcast channel.
• 0:20
  I'm very lucky to be here today with Mr. Jonathan Clark.
• 0:25
  Jonathan, would you like to introduce yourself?
• 0:27
  Sure, I'd love to. Yes.
• 0:29
  My name is Jonathan Clark. I'm 61 and I'm 5 1/2 years in
• 0:34
  remission after CAR T cell therapy, which is incredible.
• 0:38
  I have mantle sand lymphoma which is still on paper
• 0:42
  incurable deadly disease, but 5 1/2 years is looking good.
• 0:47
  Fantastic. And I believe that on the back
• 0:51
  of that you're also have a sort of a side job in addition and
• 0:56
  that is telling people, telling the world about what it's like
• 1:00
  to be in long term remission after car T cell.
• 1:05
  Why do you do that, Jonathan? Why do I do that?
• 1:07
  Well, that's a good question actually.
• 1:10
  So I had an early as a my mental cell infirm came back relapsed
• 1:15
  in 2018 and I was really lucky to be able to get on a trial
• 1:19
  because at the time there was nothing but the trial had had
• 1:22
  just moved to Europe and I was one of the first patients to
• 1:24
  have it. And so there was a quite heavy
• 1:29
  cytokine release syndrome. So I ended up in intensive care
• 1:32
  and I lay there in intensive care with sort of wires coming
• 1:35
  out of me beeping lights. And it was sort of AI don't
• 1:39
  know, it's really hard to describe, but I just lay there
• 1:43
  and thought, if I make it through this, then I'm going to
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  tell my story to everybody, absolutely everyone.
• 1:48
  I won't hold back. And I don't actually, I find it
• 1:51
  therapeutic. Weirdly I every time I tell the
• 1:54
  story I feel just a little bit, I don't know, a little bit
• 1:57
  better or I can, I can normalise it a little bit more, so it's
• 2:02
  good for me too. OK, my most pressing question,
• 2:06
  Jonathan, 5 1/2 years in, what do you think doctors need to
• 2:12
  know about from a patient's perspective because they know
• 2:14
  about the science they know about, OK, we can expect these
• 2:17
  side effects and this is the statistical significance.
• 2:20
  What are the things that they don't know?
• 2:23
  That's a good question. Well, well, I don't want to
• 2:26
  generalise because I've met many doctors and many amazing doctors
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  and also some who perhaps are less understanding.
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  The thing that I think sort of in general is I have a disease
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  and they, and that's their job to, you know, they're the
• 2:43
  experts on my disease, but I'm really the expert on me.
• 2:47
  And I think that's the difference is what is it about
• 2:50
  me, Jonathan, that would help me cope with everything.
• 2:54
  So it's the psychological aspects, it's the quality of
• 2:57
  life, it's my partner, my wife. It's the things that that make
• 3:02
  me Jonathan. Asking more about that and
• 3:04
  letting me be the expert to drive it would be great.
• 3:08
  I mean, one really good example is so I have B cell deficiency,
• 3:14
  so I need immunoglobulin. And I used to have that every
• 3:18
  month as an infusion in the hospital, which was a real pain
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  because I had to go to the hospital and you always waited
• 3:24
  and people were lovely and nice, but it's just was a hospital and
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  I really prefer not to go back to hospital.
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  It's traumatic. Then in Holland to the
• 3:32
  Netherlands, we're really lucky to have a home service.
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  So they, the nurse, nurses come to your home and hook you up,
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  which is just incredible. It's just a wonderful service.
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  And the best thing is it's good for everyone because it saves
• 3:44
  money and it's good for the patient.
• 3:45
  So it's really fantastic. Then I discovered you can have
• 3:50
  subcutaneous immunoglobin. So now I just pick up my stuff.
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  I do everything myself. I, I do it weekly, but it means
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  I can travel again. I don't have to be home.
• 4:01
  I, I have such a freedom. So that's an example of quality
• 4:05
  of life. You're thinking from the
• 4:06
  patient's perspective, you can really improve quality of life
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  just by fixing the that kind of logistical stuff. 5 1/2 years
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  in, what are what are the things that are now coming up to the
• 4:19
  surface? You know, recently we saw a
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  little bit more hubbub around long term side effects.
• 4:27
  Is that something that you're sort of got on your mind?
• 4:33
  Yes, I kind of have to. So I have two, well three real
• 4:37
  long term side effects. One is the immunoglobulin
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  dimensioned. The second is somehow my bone
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  marrow isn't as good as it used to be.
• 4:44
  And so if I get a virus, particularly in the winter, if I
• 4:47
  get a virus or some sort of infection, then I can't make all
• 4:50
  the blood cells of the bone marrow, can't make all the blood
• 4:53
  cells it needs, and my neutrophils tank and then I'm
• 4:56
  susceptible to mucositis or to infections.
• 5:00
  So I take growth factor to help, but it's still yo YOS up and
• 5:04
  down, but it it's manageable. Last year I got pneumonia, which
• 5:09
  isn't so nice this year. So far it's been good.
• 5:12
  But the one that's actually the one that is the most surprising
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  for me is the psychological effects.
• 5:19
  I was kind of the person that would have said, I'm fine.
• 5:21
  You know, if you'd asked me straight after the, the, the the
• 5:25
  car T cell or last even up until last year, I'd have said, no,
• 5:28
  I'm fine, I'm good. But actually inside or inside my
• 5:31
  head, I was anything but good. I had some PTSD symptoms and I
• 5:36
  was a lot of death anxiety and fear of relapse and I was
• 5:41
  projecting it onto my wife in a way that I didn't understand.
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  So we really had a crisis last year and, and we're building
• 5:47
  back. We have therapy, both of us,
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  couples and individual therapy and it's helping.
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  But I really wish I'd known ahead of time.
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  I mean, I don't know, it's a crisis sometimes is a good thing
• 6:00
  because it came to the surface and we did something about it
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  but was unexpected. OK.
• 6:06
  Is there anything else that you would you would like to talk
• 6:09
  about that you aren't often asked about, or that you maybe
• 6:13
  might not have a forum for normally?
• 6:17
  That's a very good question actually.
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  What I so in the Netherlands, I was actually the first mantle
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  celluliform patient in Europe to have car T cell therapy as part
• 6:30
  of the trial. And they came to the trial
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  because the hematologist in Amsterdam is a real rock star.
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  And I just was really lucky, you know, I was in the right place.
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  If I'd been mourned a little earlier or if I hadn't lived
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  near Amsterdam, it just wouldn't have been available and I, I
• 6:44
  wouldn't be here, I'd be dead. And, and the thing that gets me
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  is that's still true all over the world and all over Europe.
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  And even in the Netherlands, the mental cell lymphoma is not
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  it's, it's approved, but it can't be reimbursed, which means
• 7:00
  that patients like me have only access through trials and trials
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  are wonderful things, but they're maybe not the best way
• 7:06
  to treat patients. And so there are people like me
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  all over Europe and, and in Germany, but in the edges of
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  Europe, in the Czech Republic, in Bulgaria, all over Europe and
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  of course the rest of the world who just are not as lucky as I
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  was. And that gets me.
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  That really does. So where do you think that the
• 7:27
  issue lies? But the system doesn't.
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  And so it's not the doctors, it's the system that somehow is
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  way behind this cutting edge. I mean, this meeting is
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  fantastic and you hear about the most incredible breakthroughs,
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  but the system's just not ready for it.
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  It's still stuck in, well, let's just feed poison to people and
• 7:45
  it'll be fine. And it's not.
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  I mean, it's partly cultural and partly generational, but it's
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  also just there's a gap. There's a lack of understanding,
• 7:55
  I think, of this cutting edge stuff and a lack of
• 7:59
  appreciation. And it's getting worse because
• 8:01
  the research, you can hear it on the auditorium, the research is
• 8:04
  going at lightspeed this way, and the hospital systems around
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  the world are just kind of pinching forward.
• 8:11
  And that's not a good way to be. I don't know how to solve it but
• 8:15
  hey, I feel it. Maybe it's something that we
• 8:18
  need to also bring. Well, I had to once.
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  I thought is because someone emailed me a few weeks ago from
• 8:24
  Belgium. I don't know how they got my
• 8:26
  number or my e-mail. I think through one of the
• 8:29
  patient advocates and they said that like he was struggling.
• 8:31
  His partner has mantle cellophone, a bit of funny
• 8:34
  indolent form, which is very, very rare.
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  And because he has no visible signs of the disease, he doesn't
• 8:42
  enter get into a trial. And the standard for care is the
• 8:46
  standard of care, which is watch and wait.
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  And, and I started to think that maybe maybe that's a way round
• 8:55
  this. So that if those persons sitting
• 8:56
  in the, you know, in the village in Germany just thinks doctor
• 8:59
  tells me this, it must be true. How do we get to that person
• 9:02
  that they come to us and we say, no, actually, there's an,
• 9:05
  there's an alternative. Well, how, how is your life?
• 9:07
  You know, let's have that and have maybe patients or patient
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  advocacy groups or organisations help with that outreach, help
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  reach these people and help them at least get a second opinion.
• 9:19
  Because I think patients, you know, in the end, it's our lives
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  and, and the only thing that's lacking is not the motivation,
• 9:27
  it's the knowledge. It's almost like like I've heard
• 9:31
  it in other in other things patient navigators like come in
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  OK, what are options that might be available to me and how can I
• 9:39
  seek information about it and. Where do I go and what are the
• 9:42
  alternatives? And, and then the other thing is
• 9:45
  sort of quality of life, I think is, is so different at different
• 9:49
  stages of your life. So when I first was diagnosed,
• 9:54
  my kids were younger. They were just sort of starting
• 9:58
  college. Their mother was still alive.
• 10:03
  I got ill and OK, I, I wanted to live, but if I died, at least
• 10:07
  someone had to look and someone could look after the kids.
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  So when I did the living will for the hospital, it had, you
• 10:13
  know, it's like don't resuscitate, you know, if, if
• 10:15
  something bad happens, then OK, that's it.
• 10:17
  Sorry. But but when I came from my
• 10:21
  relapse and the and the cartesal therapy, my first wife sadly had
• 10:24
  passed away. So it was just me and the kids
• 10:27
  were older, but still not adult really.
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  And so my instructions changed completely because I was in a
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  different place just like 4 years, three years later.
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  And I think if I was, you know, in 20 years time for now, if I'm
• 10:40
  80, you know, I have had a fabulous life.
• 10:45
  I'm really not going to go say yo hook me up to the latest
• 10:48
  stuff, you know, and, and I think so not only do our
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  different patients have different needs, different a
• 10:53
  single patient had different needs.
• 10:55
  Priorities at different times. Yeah.
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  And that I think is really important.
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  Quality of life picks that up. And so that's why I kind of bang
• 11:01
  on about quality of life also in clinical trials and also as a
• 11:04
  measure for how effective cancer therapy is.
• 11:07
  You know, how is your life? Is it better?
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  Because if it isn't, is that really good?
• 11:12
  Is that doing what physicians should do?
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  Extending life for the sake of extending life rather than.
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  For exactly because it's a data point on AI mean that's being a
• 11:20
  bit harsh, but you know, it's a data point on a graph, which is
• 11:24
  great. Is that patient really happy
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  with long term difficult side effects and a compromised
• 11:32
  qualitative life. And you know, and it's, it's a
• 11:36
  dilemma, but let's talk about it.
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  It was my my theory. OK, so success story at 5 1/2
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  years, but still a long way to go for other patients with CAR T
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  cell. Therapy and I'm not going to
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  stop talking about it because it it's life changing totally.
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  And I want to give that gift to other people if we can.
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  Fantastic. That is definitely how I'd like
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  to end this. Thank you, Jonathan so much for
• 12:06
  being here for sharing this with us.
• 12:08
  As I said my promise to myself, I will say yes to any invitation
• 12:12
  like this. I'm very happy to do it.
• 12:14
  Thank you. Thank you and thank you to the
• 12:17
  listeners for tuning into this podcast episode of EHA
• 12:20
  Unplugged.