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