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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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00:14:00,600 --> 00:14:03,760
share it immediately. 
So that's why we advocates 

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00:14:03,760 --> 00:14:07,680
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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00:14:12,080 --> 00:14:15,600
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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00:18:28,760 --> 00:18:31,280
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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00:18:35,400 --> 00:18:39,640
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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00:18:42,640 --> 00:18:46,480
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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00:18:49,440 --> 00:18:52,640
example, rituximab was of course
on patent, but it's not on 

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00:18:52,640 --> 00:18:55,680
patent anymore. 
So rituximab is our biosimilar 

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00:18:55,680 --> 00:18:57,720
or generic, which is very 
affordable. 

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00:18:58,120 --> 00:19:01,360
It's also affordable or most, 
well, at least for the middle 

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00:19:01,360 --> 00:19:03,400
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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00:19:07,440 --> 00:19:10,640
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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00:19:13,600 --> 00:19:17,640
It come from by the way. 
OK, OK, well, I know Costa Rica 

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00:19:17,640 --> 00:19:21,920
quite well, but so in Costa Rica
a lot of medicines are 

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00:19:21,920 --> 00:19:24,360
affordable. 
I don't know, but maybe even 

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00:19:24,360 --> 00:19:27,280
some patented medicines, but at 
least the, the the off pated 

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00:19:27,280 --> 00:19:30,440
medicines and a lot of off pated
medicines are very good. 

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00:19:31,040 --> 00:19:34,520
When we, we, we, we have, we 
have more than 30 low and low 

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00:19:34,520 --> 00:19:37,440
and middle income counties. 
When we asked Ghana what is your

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00:19:37,440 --> 00:19:41,240
most needed medicine and, and we
asked it to a physician for 

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00:19:41,240 --> 00:19:44,680
breast cancer, as you said, 
well, Peter, if I could have 

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00:19:44,680 --> 00:19:49,040
enough tamoxifen and have 
Herceptin, I can help thousands 

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00:19:49,040 --> 00:19:53,480
of women with breast cancer. 
You can save a lot of lives with

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00:19:53,480 --> 00:19:57,400
existing affordable medicines. 
And, and, and still we use 

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00:19:57,400 --> 00:20:01,560
cyclophosphamide treating 
leukemia and, and, and lymphoma 

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00:20:01,560 --> 00:20:04,120
patients. 
Cyclophosphamides is so well 

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00:20:04,280 --> 00:20:08,360
more than 100 years old. 
It's it's what we call it €10 

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00:20:08,360 --> 00:20:11,560
per gallon. 
It's very affordable, you see, 

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00:20:11,560 --> 00:20:15,600
so you can you can do a lot of 
good things with affordable 

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00:20:15,600 --> 00:20:18,040
medicines. 
One of the products that we this

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00:20:18,080 --> 00:20:21,800
early detection, early detection
based on a blood draw and then 

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00:20:21,800 --> 00:20:25,680
look for proteins and you can 
find now 14 different cancer 

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00:20:25,680 --> 00:20:30,120
types with a simple what 
analyzes of the data and then an

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00:20:30,120 --> 00:20:33,520
algorithm runs and it gives you 
a probability of cancer. 

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00:20:35,560 --> 00:20:41,400
The price of the algorithm is 
around 50 sixty $70 and one of 

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00:20:41,400 --> 00:20:45,720
our advocates is a Chinese 
researcher and he has 2 

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00:20:45,720 --> 00:20:49,720
approaches. 1 is compared to 
Gallery and Thrive and other 

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00:20:49,720 --> 00:20:53,840
projects based on DNA 
sequencing, which is 11/12 on 

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00:20:53,840 --> 00:21:00,200
which is unaffordable. 
His product is 70 eighty $90.00,

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00:21:00,200 --> 00:21:04,320
which is much more affordable 
when you look at the sensitivity

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00:21:04,320 --> 00:21:08,480
and specificity of the DNA 
sequencing. 

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00:21:09,080 --> 00:21:13,600
Well, the specificity is not 
really higher than the pro only 

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00:21:13,600 --> 00:21:19,080
protein. 
The sensitivity is 58% of the 

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00:21:19,080 --> 00:21:24,160
protein tumor marker analysis 
where gallery is and his own 

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00:21:24,160 --> 00:21:28,440
sequencing product, by the way, 
is above 80, which means the 

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00:21:28,440 --> 00:21:32,600
sequence is what is better but 
unaffordable. 

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00:21:33,080 --> 00:21:35,480
So and and he has a beautiful 
remark. 

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00:21:35,480 --> 00:21:38,880
He says, you have Peter, sushi 
is better than rice, but when 

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00:21:38,880 --> 00:21:42,800
you're hungry, rice will do. 
And we asked the professors in 

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00:21:42,800 --> 00:21:46,640
Nigeria and Kenya what should we
do? 

348
00:21:47,240 --> 00:21:51,760
And you know, Peter, Ifoma 
Okoye, who is a professor in 

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00:21:51,760 --> 00:21:56,960
oncology in Nigeria, you know, 
Peter, the sensitivity in my 

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00:21:56,960 --> 00:22:02,120
country at this moment is 0% 
because we do not detect 

351
00:22:02,120 --> 00:22:04,560
anything. 
So if you come up with a product

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00:22:04,560 --> 00:22:09,120
of 58%, so we make quite some 
progress and and we also ask the

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00:22:09,120 --> 00:22:12,640
ethical question because OK, but
then we detect it. 

354
00:22:12,920 --> 00:22:16,080
But then it needs to be if you 
find a cancer, you need to treat

355
00:22:16,080 --> 00:22:18,800
it. 
Is it ethical to only detect and

356
00:22:18,800 --> 00:22:22,240
maybe not able to treat it 
because the treatment is not 

357
00:22:22,240 --> 00:22:26,680
available or is too expensive? 
And her remark, and that was 

358
00:22:26,680 --> 00:22:30,120
also the remark of the professor
in Kenya, is we need to 

359
00:22:30,120 --> 00:22:34,560
breakthrough that circle of 
desperation where patients don't

360
00:22:34,560 --> 00:22:39,040
come to the hospital and die in,
in, in, in, in loneliness or 

361
00:22:39,040 --> 00:22:43,480
when they come to the hospital. 
80% of the patients in in these 

362
00:22:43,480 --> 00:22:47,400
countries come in stage 3/4 to 
the hospital where the only 

363
00:22:47,400 --> 00:22:52,240
thing that you can do is pain 
management to have to give them 

364
00:22:52,280 --> 00:22:57,880
a dignified way of dying. 
So we have to breakthrough that 

365
00:22:57,880 --> 00:22:59,960
circle of desperation. 
So. 

366
00:22:59,960 --> 00:23:02,640
There are many things that can 
be done with not that much money

367
00:23:02,720 --> 00:23:06,200
because you can get the message 
to people that you have to go to

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00:23:06,200 --> 00:23:07,760
the hospital as soon as 
possible. 

369
00:23:07,760 --> 00:23:10,480
And the other thing would be to 
use medicines that are not that 

370
00:23:10,480 --> 00:23:12,240
expensive, but they're still 
good. 

371
00:23:13,080 --> 00:23:15,960
They're still cyclophosphamide 
is still good. 

372
00:23:16,320 --> 00:23:21,440
It's still good Ida Foundation, 
which is are related to the 

373
00:23:21,440 --> 00:23:25,520
World Health Organization and 
Ida Foundation provides 

374
00:23:25,520 --> 00:23:28,720
medicines for low and middle 
income countries and they have a

375
00:23:28,720 --> 00:23:32,080
quality check. 
So they deliver good quality 

376
00:23:32,080 --> 00:23:34,760
medicines for the lowest 
possible price. 

377
00:23:34,760 --> 00:23:37,000
And we already set it up for 
Uzbekistan. 

378
00:23:37,000 --> 00:23:40,240
One of our advocates is a 
medical well, he has now got his

379
00:23:40,240 --> 00:23:45,760
PhD and he worked on it in his 
country, Uzbekistan who said 

380
00:23:45,760 --> 00:23:49,000
what are the most needed 
medicines that we do not have 

381
00:23:49,000 --> 00:23:51,840
and need? 
And the Ministry of Health had 

382
00:23:51,840 --> 00:23:55,600
has budget for these medicines. 
And then, then it's basically 

383
00:23:55,600 --> 00:23:58,240
very simple. 
It's it's called NCD Connect, 

384
00:23:59,000 --> 00:24:02,040
which is basically the supply 
chain for medicines. 

385
00:24:02,400 --> 00:24:06,600
And the doctor in Uzbekistan 
simply says, hey, I have well, 

386
00:24:06,600 --> 00:24:11,120
for example, I have 12 breast 
cancer patients that need 

387
00:24:11,160 --> 00:24:14,680
tamoxifen. 
Well, she orders for 12 patients

388
00:24:14,680 --> 00:24:18,440
for one year, She pays, gets 
medicines delivered and that 

389
00:24:18,440 --> 00:24:22,440
that's how how it's been set up 
in good and affordable. 

390
00:24:22,760 --> 00:24:25,520
So thank you very much Peter to 
be for being with us today. 

391
00:24:26,200 --> 00:24:30,040
Thank you for the invitation and
I really appreciated it, the way

392
00:24:30,040 --> 00:24:34,360
we could elaborate on progress 
in science treatments. 

393
00:24:34,360 --> 00:24:38,400
And like I said, the outcome 
always needs to be a better 

394
00:24:38,400 --> 00:24:41,080
quality of life. 
So really thank you for this. 

395
00:24:41,200 --> 00:24:43,360
Thank. 
You to all of you for listening 

396
00:24:43,440 --> 00:24:47,680
and if you enjoyed this episode,
please like it and subscribe to 

397
00:24:47,680 --> 00:24:50,680
our channel. 
Stay tuned for more episodes of 

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00:24:50,680 --> 00:24:51,640
EHA Unplugged.