Latest / EHA Unplugged / Connecting Hematology Research and Real Life: Peter Kapitein

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Connecting Hematology Research and Real Life: Peter Kapitein · EHA Unplugged

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We patient and we patient advocates simply say, hey, it's
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our data, use our data. A lot of data is not used or is
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used in a later state and it simply slows down progress in
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research. And when you slow down progress
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in research, you slow down progress in treatments.
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And for us patient, it's always about quality of life that needs
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to be improved. So it's data, it's research,
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it's treatments, it's quality of life.
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The end goal is always improved quality of life.
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Welcome to EHA Unplugged, the official podcast channel of the
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European Hematology Association. EHA.
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I am Isabella Rivera, your host today.
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We'll have the pleasure to have with us Peter Kapitan.
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Peter Kapitan is a patient advocate that inspired to live.
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Peter's lifelong work centers on one essential question.
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How can we bridge the gap between what science discovers
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and what patients really receive?
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In this episode, we'll explore what meaningful advocacy looks
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like, how patient voices can shape access to new therapies,
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and why collaboration across communities is key to improving
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outcomes. So welcome, Peter.
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Thank you for being with us today.
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Thank you for the invitation and happy to contribute to the
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listeners who hopefully can be helped with my stories.
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To start off, Peter, you often say that advocacy means
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connecting people who should already be connected.
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What inspire you to take on that mission?
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Well, that's, that's a good question.
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People think they are connected and of course they are
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connected. I think all researchers, for
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example, meet with each other on congresses, they meet with
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doctors, they meet with industry.
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So people really know to find each other, but finding each
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other and really working towards and goal that contribute to
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patience is something different. And and what what we aim for and
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what we are doing within inspired to live is what we call
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we bring together the right people.
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And that sounds very general, but the right people are not
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always the people that normally meet each other at events like
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congresses. So we really think about who
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should meet who. And to give an example,
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sometimes a fundamental researcher in cancer might be
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helped by someone who knows a lot about rheumatoid arthritis.
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And then we bring together these researchers on, for example, DNA
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repair on aging and rheumatoid arthritis because they both
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probably know things that are of importance for the other one.
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And this sounds again a little general, but we within expired
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to live, have so many different expertises that we are able to
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say, but in this situation you should ask her or him to work
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together with the other people and then we bring them together
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and well, we start initiatives and quite often, of course, not
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always, but quite often it becomes successful.
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We're talking about Inspired to Live.
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Can you explain what Inspired to Live is?
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Yes, in 2010 we started with Inspired to Live and and you
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could say the reason for that is I was diagnosed with a lymphoma
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in 2005 at several relapses. I had an autologous stem cell
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transplantation in 2008. I had 2 1/2 months later in
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September the 3rd, 2008, an allogenic stem cell
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transplantation. And then I wanted to know who
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designed, developed these stem cell transplantation.
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And one of them appeared to be a Dutchman and I worked with him,
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his name is Dick van Beckham. I worked with him until his
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death. Dick died in 2015 when he was 90
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years old. And from him I basically learned
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how to work with scientists and well as a kind of giving back
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for all the good treatments based on good science, all the
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good nurses, doctors I had, I started inspired to live.
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Of course, I first started out to zest, a fundraising
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initiative. We raised so much money that we
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could set up very, very good and also expensive research.
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But in 2009 we thought we are very good in the Netherlands.
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With research we can do better on implementation.
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And together with that cancer organization, at that moment,
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we, we decided to go international and because we are
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good in research, but we will not be able to solve the problem
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of cancer alone in the Netherlands.
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For that we need cooperation. And basically that's how aspire
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to live start formally 2010. We, we had our first initiative,
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our annual Congress in 2011. We brought together researchers
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and clinicians from the United States, Canada and Europe in one
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room and started initiatives. That was really an breakthrough.
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We started projects which were performed by researchers and
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clinicians from the United States, Canada and researchers
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for Europe. That was basically the start and
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Inspired to live is well in, in essence, it's still the same.
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We bring together the right people now, not only in Europe,
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North America, but globally around a certain topic.
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And then we start an initiative. Well, we, we start lots of
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initiatives. You could say we're a knowledge
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broker. A lot of knowledge is inside our
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organization, but of course we do not have all the knowledge,
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but we know to find the knowledge.
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So we are a knowledge broker and a network organization where our
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professional volunteers work together.
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Volunteer in the sense that they do not get paid for their work
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within Inspired to Live professionals because they're
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professional in their Research Institute or in their hospital
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or in their company when they work at at industry.
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Can you give us an example of 1 project that has been successful
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in reuniting researchers with patients and that has changed
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the way things were done? We brought together researchers
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from the United States and Europe, 2011, 1213, and a small
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group. I think in total we were 12
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people and out of that came four projects with organoids.
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So these were projects for lung cancer, prostate cancer, for
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pancreatic cancer and for colon cancer, 4 projects on average $6
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million each were, were, were started and they were, they run
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for 3/4, sometimes five years. And in the end, the result of
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that was here in, in, in the Netherlands, we have it's called
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a hub for organoids where organoids are produced and they
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are used for finding the right treatment.
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They are used by industry for testing their medicines in phase
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one or Phase 2. So you could say it's not that
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Organoids wouldn't have been here without Inspired to Live,
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but if you ask these researchers, we at least speed
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up the process of Organoids five years.
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That's what we more or less guess that is.
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So Organoids is one of the big successes of Inspired to Live.
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So inspired to live, to live connects people but you don't
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bring money. No, we don't fund research.
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We bring together start initiatives of we design
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initiative so to say and then we are look together for the right
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funding. Who designs the initiative from?
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The start, we discuss what needs to be done, how it needs to be
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done. To give an example, at this
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moment, we are part of an application for the cancer grant
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challenge with now with the last four on dark proteomes, which is
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a very fundamental research. But Ilona and I2 patient
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advocates of inspired to live cooperate with researchers and
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clinicians from well, the Dutch Cancer Institute, but also Dana
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Farber, Michigan University, MIT in the US.
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So a big international consortium.
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We're we're in it now and a moment we get funded, we will
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continue, continue working together.
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You have argued that we often fail to do what we already know
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works. What do you mean by that?
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We do not execute what we already know.
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Yeah, it's, it's, it's, that's a quote from from a British
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scientist. And, and, and it really
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expresses what can be improved. Science is way ahead of the
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clinical practice, which is normal.
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First you have to have the evidence.
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But the time between the evidence and the implementation
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in the clinic, that's too long. If you know that a new approach,
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a new treaty, let's take CAR T, We know how to do Car T, and
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still we are struggling with implementing it.
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And of course, in the Netherlands we have one
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implementation and in France a little bit more and in Germany a
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little bit more, but we are not executing what we already know.
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I live because of an allergenic stem cell transplantation and I
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owe my life to that. But I'm an advocate for CAR T
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because the big advantage of CAR T is that you keep your own
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immune system so there will never be rejection because it's
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your own immune system. And the success rate of CAR T is
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much higher than the Allon had genic stem cell transplant.
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In cell therapy, there's also the matter of cost.
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It's not obvious to translate this into a clinic because it's
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a very complicated process and it's also very costly.
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There are so there's so much research to try to make it
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cheaper and more affordable. Are you important?
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What? For EHA, I'm a project manager
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in the Ascertain program, which is about pricing, cost
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effectiveness and reimbursement. And one of the advisers of
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Ascertain is Julio Delgado who is a physician in Barcelona and
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he produces artiste and his price is around €80,000.
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Well, €80,000 is more or less the same as the cost for an
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allergenic stem cell transplantation.
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So you see that we can do it more affordable.
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There is a good project here in the Netherlands inhroning and
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and, and Rotterdam, they are working on producing car tease
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in, in, in, in house, in the hospital, which will also make
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them much more affordable. So I think research is not, it's
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not only finding the best treatment, but also the best
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affordable treatment. But I also think you should look
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for how can we make it affordable not only for the
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rich, Netherlands, Germany, France, but when we talk Europe
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also for Romania, Bulgaria, Poland, Hungary, the more less
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rich countries in Europe. Yes.
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You're going into what I wanted to ask because EHA has this
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focus now on borderless hematology.
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And he wants to emphasize in part that one of the priorities
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for EHA is equitable access. And of course, many of the new
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treatments for cancer like B specifics and cell therapy like
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RT are really expensive. How do you think we can help
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these get to more people think? We should also look to
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procedures that are less costly when you make it in house in the
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hospitals in which will probably be at least first the academic
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hospitals. So these are robust abilities.
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And as we know, car T is one treatment and then well after of
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course it's, it's, it's a very complicated treatment and you
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need a good intensive care unit, etcetera, etcetera.
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But if it's successful, you can go home.
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So I think we should look for more creative solutions in house
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production or go to hospitals like Barcelona.
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And this is, this is the way we can, we can also bring these
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innovative, innovative cellular and gene therapies to the less
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rich countries in Europe. So you also are very interested
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in ownership of data. That's my data.
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Use my data. What does that mean in practice
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for you? We.
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Patients, we produce tons of data by simply being diagnosed.
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The treatments that we had go through.
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We produce a lot of data, which is how a treatment works in my
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body. This data is is is filed in in
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in repositories. There are two aspects on data,
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the legal asect and the ethical asect.
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O the legal asect, if your data is in the hospital, it's still
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your data. An you're allowed to ask for the
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data and do with it what you want.
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If your data is from a trial, it's legally owned by industry.
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But there is also an ethical aspect on that and that is that
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this data is extremely important for research and industry to
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innovate the treatments. We patient and we patient
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advocates simply say, hey, it's our data, use our data.
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A lot of data is not used or is used in a later state, and it
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simply slows down progress in research.
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And when you slow down progress in research, you slow down
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progress in treatments. So it's data, it's research,
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it's treatments, it's quality of life.
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The end goal is always improve quality of life.
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It's our data, at least from an ethical perspective, you should
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share it immediately. So that's why we advocates
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simply say, hey, it's our data, use our data.
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For a lot of patients who will not benefit from the latest
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treatments, it's the only possibility to contribute.
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And and patients want to contribute maybe 1 or 2% not but
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but the great majority wants to contribute to science to improve
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treatments for the patients that come after them.
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So do you think most patients give free access to the data to
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research I. Wrote an article, it's well
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almost ready for peer review. And in the article a couple of
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references that shows that more than 95% of the patients say use
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my data. You don't even have to ask, use
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my data because I gave it for diagnostics or whatever.
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So use it. Some patients say, oh, you have
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to ask permission, but it's basically the legal people.
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Patients don't talk about privacy.
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They expect you to deal with data in a proper way.
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The checks and balances in the use of data are in place.
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A researcher might make a mistake.
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That's always possible. But researchers know that if
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they misuse the data, well, their career will be damaged.
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So they don't they don't you think?
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There are enough checks and balances to keep you know.
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Obviously data is anonymized or a semi anonymized.
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And if the checks when balances fail, I should say the benefits
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of immediate sharing are much greater than the damage that can
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be done when data is misused. So.
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And that's what I call the hidden cost of saying no, it's
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not that when you do not use the data or do not share the data
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that there are no consequences. The consequences of not sharing
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is slowing down the progress of research, treatments, quality of
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life, which simply cost lives. So looking ahead, what do you
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think that could be done differently in advocacy to get
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the the treatments quicker to the patients?
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Basically what we need to do is more cooperation between
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patients, researchers and clinicians.
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And I think that's important that when you want change in
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healthcare, cooperations between patients, researchers and
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clinicians is key. If you go alone as a patient
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advocate, you will be not successful.
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If you go alone as a researcher or as a doctor, you will be not
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successful. Maybe in the end, but you can
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speed up the process by bringing together science treatments and
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the patients and then go to the regulators, to the ones who have
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to approve, who has to fund, etcetera, etcetera.
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I think cooperation is key. So we go back to the goal of
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Inspired to Live, which is to put the people who need to be in
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contact in contact. Finally, if you want our
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audience to remember one thing, one message of this
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conversation, what would it be? I think for the benefit of
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patients, it's key to cooperate because if we don't, we lose too
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much lives, but we have the capacity to change that.
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Simple, but really hard to do. There's a difference between
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simple and easy. Some things are really simple.
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It is about cooperation. It is about working with the
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right people together. That doesn't mean it's easy.
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The the the reason why and always think of why we should do
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it. The reason why is so important.
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We're not talking about 10 or 100 or 1000 patients.
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We're talking about 100 thousands of patients or
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millions of patients in Europe and we're talking about 10s,
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million, 10s of millions patients globally.
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I mean what we produce on good treatments in Europe also needs
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to come available for the lower middle income countries in
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Africa, in South America and in the Middle East in Asia capacity
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of helping lower middle income countries, not only the low
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income countries or the middle income countries in Europe, but
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our organization is global. So we work with countries like
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Kenya or or or Guinea or Armenia.
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All these countries need our help and I know EHA for well at
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least since 2010. I know that it is an
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organization that has enormous capacities to improve the
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quality of life of patients in Europe and on a global level as
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well. It's quite easy to help the
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medicines that cured me. I had treatments from 2005 to
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well, let's say 2009, but the medication I got was and is
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good. So a lot of medication that we
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can offer these countries are now very cheap.
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Maybe in my time it was expensive because it was for
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example, rituximab was of course on patent, but it's not on
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patent anymore. So rituximab is our biosimilar
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or generic, which is very affordable.
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It's also affordable or most, well, at least for the middle
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income countries. And well, there are of course
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extremely poor countries where it's not affordable, but you can
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start working on it. You take oh, for example, like
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Costa Rica, which is not a rich country where?
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It come from by the way. OK, OK, well, I know Costa Rica
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quite well, but so in Costa Rica a lot of medicines are
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affordable. I don't know, but maybe even
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some patented medicines, but at least the, the the off pated
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medicines and a lot of off pated medicines are very good.
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When we, we, we, we have, we have more than 30 low and low
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and middle income counties. When we asked Ghana what is your
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most needed medicine and, and we asked it to a physician for
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breast cancer, as you said, well, Peter, if I could have
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enough tamoxifen and have Herceptin, I can help thousands
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of women with breast cancer. You can save a lot of lives with
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existing affordable medicines. And, and, and still we use
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cyclophosphamide treating leukemia and, and, and lymphoma
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patients. Cyclophosphamides is so well
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more than 100 years old. It's it's what we call it €10
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per gallon. It's very affordable, you see,
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so you can you can do a lot of good things with affordable
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medicines. One of the products that we this
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early detection, early detection based on a blood draw and then
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look for proteins and you can find now 14 different cancer
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types with a simple what analyzes of the data and then an
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algorithm runs and it gives you a probability of cancer.
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The price of the algorithm is around 50 sixty $70 and one of
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our advocates is a Chinese researcher and he has 2
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approaches. 1 is compared to Gallery and Thrive and other
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projects based on DNA sequencing, which is 11/12 on
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which is unaffordable. His product is 70 eighty $90.00,
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which is much more affordable when you look at the sensitivity
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and specificity of the DNA sequencing.
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Well, the specificity is not really higher than the pro only
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protein. The sensitivity is 58% of the
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protein tumor marker analysis where gallery is and his own
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sequencing product, by the way, is above 80, which means the
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sequence is what is better but unaffordable.
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So and and he has a beautiful remark.
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He says, you have Peter, sushi is better than rice, but when
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you're hungry, rice will do. And we asked the professors in
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Nigeria and Kenya what should we do?
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And you know, Peter, Ifoma Okoye, who is a professor in
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oncology in Nigeria, you know, Peter, the sensitivity in my
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country at this moment is 0% because we do not detect
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anything. So if you come up with a product
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of 58%, so we make quite some progress and and we also ask the
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ethical question because OK, but then we detect it.
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But then it needs to be if you find a cancer, you need to treat
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it. Is it ethical to only detect and
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maybe not able to treat it because the treatment is not
22:22
available or is too expensive? And her remark, and that was
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also the remark of the professor in Kenya, is we need to
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breakthrough that circle of desperation where patients don't
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come to the hospital and die in, in, in, in, in loneliness or
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when they come to the hospital. 80% of the patients in in these
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countries come in stage 3/4 to the hospital where the only
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thing that you can do is pain management to have to give them
22:52
a dignified way of dying. So we have to breakthrough that
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circle of desperation. So.
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There are many things that can be done with not that much money
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because you can get the message to people that you have to go to
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the hospital as soon as possible.
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And the other thing would be to use medicines that are not that
23:10
expensive, but they're still good.
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They're still cyclophosphamide is still good.
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It's still good Ida Foundation, which is are related to the
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World Health Organization and Ida Foundation provides
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medicines for low and middle income countries and they have a
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quality check. So they deliver good quality
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medicines for the lowest possible price.
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And we already set it up for Uzbekistan.
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One of our advocates is a medical well, he has now got his
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PhD and he worked on it in his country, Uzbekistan who said
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what are the most needed medicines that we do not have
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and need? And the Ministry of Health had
23:51
has budget for these medicines. And then, then it's basically
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very simple. It's it's called NCD Connect,
23:59
which is basically the supply chain for medicines.
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And the doctor in Uzbekistan simply says, hey, I have well,
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for example, I have 12 breast cancer patients that need
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tamoxifen. Well, she orders for 12 patients
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for one year, She pays, gets medicines delivered and that
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that's how how it's been set up in good and affordable.
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So thank you very much Peter to be for being with us today.
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Thank you for the invitation and I really appreciated it, the way
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we could elaborate on progress in science treatments.
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And like I said, the outcome always needs to be a better
24:38
quality of life. So really thank you for this.
24:41
Thank. You to all of you for listening
24:43
and if you enjoyed this episode, please like it and subscribe to
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our channel. Stay tuned for more episodes of
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EHA Unplugged.