Hello, everyone.
And this is Maya again, Trials with Maya Z.
And I'm with another episode of our mini series about the importance of standard of care.
I'm here today with Robert Joyce, who I recently met.
He was recommended to me by another patient advocate friend.
Robert was just starting to
Tell me about his his background his story about the way he's fighting multiple chronic diseases And I stopped him and I said Robert let's record that because people like you and
your stories are definitely inspiring So Robert now you can continue with your story Tell me more about yourself and what led you to to become a patient advocate and not only
So if I begin again, I've got several chronic illnesses.
So I've got secondary progressive multiple sclerosis.
I've had it for more than 30 years now.
Obviously it started with relapsing remitting MS.
I've also got asthma, sarcoidosis, and I also live with chronic pain.
And I actually celebrated my 10th year anniversary of chronic pain there a couple of days ago.
Congratulations.
It's good to celebrate these things.
actually, I like your perspective because what's the other choice?
Like, you don't have any other choice.
And when I say, when we started the conversation, I said, when you said you have multiple chronic diseases, I said, I'm sorry, but actually you're right.
mean, it is what it is.
You have to fight.
It's your life.
It's your thing.
So congratulations, Robert.
Well, you know, the thing is, if you dwell and you focus on the negativity, then your life is negative.
So if you switch that around and focus on the positive, your life has more color and it is a little bit more exciting and you can utilize that maybe negativity in a positive sense.
And in fact, that's maybe
when I describe my story a little bit, why I am where I am now.
Because in 2017, I started a blog called 30 Minute Life, where I was sharing my experience of transitioning from being in the world of work to not working anymore.
And it's a painful transition and it's tough to go through.
But in one sense, it was liberating because once I actually accepted my disability and once I accepted the new rules of my illness, suddenly I could redefine my life and change
it in a way that was perhaps a little bit more positive.
And so as a result of that, I became more involved with the MS Society.
I was writing blog posts and I heard about a...
a a feasibility study for a new therapy to aid people with MS with cognitive problems, which is actually very common for people with MS.
More than 50 % have some kind of cognitive issues.
And I was employed as an assistant researcher on that study, that feasibility study.
And because of my experience living with MS and my understanding of the disease,
they were using me to be the voice of people with MS within the study so that anything that was done was looked through the lens of the patient and how it would impact us.
And so for example, one of the issues that we had was there was a booklet that we had for the study that we would be presenting to the participants when they were being taught this
new therapy.
I remember the researchers when they showed it to me and they were so delighted.
It was beautifully produced, know, full color, really nice production.
But I said to them, but that's not suitable for people with multiple sclerosis.
And they just, what do you mean?
It's just a booklet.
And I said, but the problem is it doesn't lie flat on the table.
And
Multiple sclerosis, like I've got sensory difficulties with my hands.
Everything feels funny.
I from a tactile point of view.
It's very, very difficult.
But also people with MS have muscle weakness and they also have tremor.
And so if you can imagine coming in to be taught something and the materials that you are using are not suitable for your illness, how are you going to really trust what that
therapist is telling
because from the very beginning they've made a mistake.
And so...
saying with this booklet, they don't understand me.
They're different.
But they, and this is what I always say, they have not lived with my hands.
My hands are the hands of somebody with MS.
And I think this was actually a transformative point in the study where they suddenly realized the benefit that having somebody with lived experience in the study can actually
transform how it's done.
And as a result, I was involved in writing the patient information leaflets
training the occupational therapists on how to teach the therapy.
I was involved with producing the materials, the videos, the newsletter that we had.
I did the post -intervention interviews, many, many things.
And I was actually responsible for recruiting over 50 % of the participants in the study because of the network that I had within the MS community.
but also how I could share my story in the media to help attract people to come into the study.
So I changed my title, or it was changed for me in a way, from being an assistant researcher to an embedded patient researcher.
And I think that is really critical in actually developing studies into the future.
And as a result of that, we completed that study.
then because of the success of it, we are now going to do a definitive clinical trial on the therapy.
And I was a co -applicant in that application for the grant aid on it.
And I actually wrote sections of the application.
So very much the patient is involved in this next step.
Now we do have an issue because
I can't really work in the traditional sense and I'm on a social welfare payment in Ireland and because of that disability payment that I'm on, I'm actually not allowed to do
any work, paid or voluntary, right?
So we're trying to see if we can get those rules changed and that's the problem actually throughout Europe and in fact throughout the world in effect.
And that needs to be changed.
Yeah, absolutely.
And by the way, a new friend of mine, he is actually now trying to change an act in United States.
I didn't know about that because I'm based out of Europe.
I've lived just a little bit in States, but like never been in this situation.
I didn't know that in the United States, if you're on welfare,
Again, like you said, you're not allowed to get like, you're basically lose your welfare if you start getting any money.
And then clinical trial reimbursement for clinical trials is actually taxated as a basically income.
And that's ridiculous because I think two thirds of Americans are somehow impacted.
One third and one third, I'll mislead you in the numbers, but I remember a huge portion.
And I was wondering,
what is it like in Europe but now you're saying that it's the same in Ireland.
Do you know anything about other countries by the
it is.
It's pretty much the same.
Anybody that I have spoken to throughout Europe and from the different regions that I've spoken to, it is an issue.
The biggest thing is it's a revelation to researchers because they never realized that this was a problem.
And that is because we've been excluded.
We have been excluded by the government.
We're not allowed to engage.
So in fact, our voices have been silenced.
And as a result of that, then the diversity that we would have in the development of clinical trials is impacted because we don't have the whole voice of the patient
community.
We only have the voice of people who have independent financial means that can actually afford to share their voice.
So I actually think that this is a big obstacle.
And it could be the reason why so many trials are not as effective because they cannot recruit
from a certain cohort of people because they don't have any connection into it.
And there could be a perception from the people of that cohort that is not allowed that they're not wanted or that the research community does not want to hear from them, but
also because their government is saying, we don't want you to share your voice, which is actually working at cross purposes to what's safe the Department of Health.
might want.
They want those voices, another section of the government is preventing it.
So I think it's a fundamental
Yeah, speaking about cohorts in another episode of Trials with Maya Z I discussed with another patient advocate that different patients have different unmet needs, different
needs in general.
Here I'm not speaking about the patients on the welfare, but actually patients on the welfare in Ireland and patients on the welfare in the UK and patients on the welfare in
Germany and so on and so forth basically.
what is actually the difference between, is there actually a difference between patients like in different countries?
Where does difference comes from Robert, from your
Yeah, see it
disease, at the of the day it's the same disease, so you must be going for the same thing, but is it really the case?
It's fundamentally different, I think, from country to country.
take, for example, my multiple sclerosis.
In Ireland, we have a shortage of neurologists.
We only have a quarter of the number of neurologists that we actually need to have to serve as our population.
You go to Spain and they have sufficient neurologists.
And that actually has an impact on patient care.
If you have somebody who is so
rushed with so many people, they don't have the time to spend with the patient, they don't have the time to actually do those cross department chats.
the neurologist would have to speak to an occupational therapist, to a urologist, to somebody, ophthalmologist, all the different specialties.
Do they have the time to have those discussions with the other disciplines so that you can actually
give a better standard of care.
And for an example with me, I have chronic pain and they were going to treat that with morphine, okay?
But because of the lack of communication between my pain specialist and my neurologist, I was about to be put on that morphine.
By the luck of the draw, I got to speak with my neurologist as luck would have it.
And he said, that would be the worst thing for me to
for the type of pain that I have, right?
And also to do with my multiple sclerosis.
So because they don't have those links between the different departments, because of lack of time, right?
And then, so then the standard of care that I would be getting in Ireland is going to be substandard in comparison to another country that may have sufficient, okay?
But you also have lots of cultural issues as well, whether the way
illnesses presenting.
So multiple sclerosis by and large tends to be an invisible illness.
It's very hard to see.
You can't see that I can't feel things properly with my hands.
I have pins and needles all the time.
You just can't see it.
So how can you perceive it?
And in some countries, culturally, they would say, well, if we can't see it doesn't exist.
Right.
You know, you could be pretending it could be a doubt if you have a very paternalistic health care system.
Whereas if you have one that's a bit more holistic.
They will say, just because I don't see it and I can't feel it doesn't mean it doesn't exist.
And so you do have those differences between different countries and also even language, the way we speak, the way we look at the world, how we perceive the future, for example,
if there's no future tense in our language or it is not as developed as in other languages, it's all about the here and now rather than about the future.
So I actually think there are a lot
cultural and systemic differences between countries that can be obstacles to real patient engagement and real inclusion within clinical trials.
That's a big challenge.
You know, it's not easy to
What about access to treatment?
Is it very different in Ireland versus like I'm comparing Ireland because you're based out of Ireland, but I know that you are working in this field for quite some time.
So have you been comparing what is the access to treatment in your country versus other countries?
For example, because there are like constantly new research going out and like new treatments, especially for MS.
It's one of the areas that's been researched quite a lot
So do you feel that it's similar everywhere or there are huge discrepancies, the huge differences, I'm sorry.
I think the difference is not necessarily to do with the country, but it's to do with the specialist.
So for example, there's an associate of mine or a colleague of mine, Dominic Shadbolt who has a blog called or a thing on YouTube called the MS Guide.
And he actually interviews specialists as part of what he does.
So neurologists.
And if you have a progressive neurologist, they may say,
we've diagnosed you with multiple sclerosis, we're going to hit it hard and fast, right?
We're going to give you the best medicine and we're going to give it to you now so that we can actually prevent maybe future disability by treating you earlier in the system.
But you might have another neurologist, I have experienced here in Ireland, much more conservative.
We'll try the easy ones first, the more gentle ones.
And then if we feel that things are getting worse, we will ramp up what we give you.
That is based on the individual specialist rather than on a national context.
But you also have, so I've experienced that and I know that it is more focused on the individual who's giving you that care rather than on the nation.
Because I think by and large in Europe, we have access to the same medicines.
By and large, we can...
countries can pay for them, like we are wealthy countries by and large, so that is not as big as an obstacle as it would be in a poorer country.
So I think that's where we have a huge advantage.
But you still have that mindset change that you have to do with the people who are giving the clinical care.
And how do you bring those clinicians to
cohesively and work with the same standard within a country.
And there you're actually trying to change the personality types of individuals.
And how are you going to do that?
Unless you create a definitive standard of care and that this is the way it has to be applied.
But then it's almost like an AI thing.
It's a computerized system where you say, this is, we found this, boom, boom, boom.
This is the way you do it.
There's no scope for individual difference.
As a matter of fact, the reimbursement rules are kind of playing this role because in many countries, in most countries, the rich countries, let's say, you actually don't have any
explanations what a certain treatment is reimbursed for.
Basically, you have the indication, but not necessarily at exactly what stage of the disease progression you can prescribe that.
And then it's up to the clinician to decide, OK, now I think that this will be better.
versus another one, but in many countries that have a limited budget when it comes to like healthcare, their healthcare, and that's actually you will be surprised, but it's actually
happening in a lot of even European countries.
They will be very definitive, like descriptive at what stage of a certain disease progression, a certain treatment will be reimbursed.
And for example, more the modern treatments and the more expensive treatments.
especially biological treatments, they will be always put for, let's say, when the disease has much more progress.
Or maybe it's not about the disease progression sometimes, it's about, okay, do we have other options?
Let's exhaust them first, corticosteroids first, and then biologic, even though biological drug may be much better than the corticosteroids.
Even if the clinician wants, by the way, even if the clinician thinks,
Okay, I want to go for the second option, but no, by the reimbursement rules, you have to first try with this first line treatment, so to say, and then go to the second one.
So that kind of serves like this way, but I also understand where you're coming from.
Robert, tell me, have you been ever in a situation where you have to choose between the available treatment options in your country and a clinical trial?
No, I haven't.
Okay, so I have not been involved in any clinical trial.
Well, I've been involved in trials over the years I was actually involved in one trial when I was first diagnosed which was the use of Contrasting agents in MRI and for
diagnostic purposes.
So that was 30 odd years ago And so that was my first involvement in the clinical trial.
I've been more and involved in
the researcher side of the clinical trial process rather than as a participant.
And that is probably a function of the fact that in Ireland, we don't have that many clinical trials on medicines going on.
We're trying to improve that situation in the country.
But it is difficult to do because of the way our health system has been set up.
But the Department of Health and the Health Service Executive, which
governs the health system here in Ireland are putting together a system for better clinical trials within the country.
And in fact, I was part of the research governance committee that was helping to design how those trials would be done in the country.
So I'm more active, maybe more on the policy side or on
researcher side than actually as a participant because there isn't actually that much opportunity and also because of the stage I am in my illness.
At the moment where I am part of that cohort that they don't.
I'm older, I'm secondary progressive, it's not as important as those who are just newly diagnosed.
What difference would a clinical trial have on my life?
Well, not
huge amount, but it would help those who are following after me.
Whereas the trials at the beginning of your illness life, they are much more fundamental because they can actually change the trajectory of your disease.
Yeah, but Robert, like, correct me if I'm wrong, but when you're at the very beginning of your, let's say illness progression, you also have way more options that are like already
established, let's put it that way.
So how do you choose between an established option, an established treatment in a clinical trial?
And have you been in such conversations with maybe friends or people within your community?
How do they choose between standard of care and clinical trial?
That's a real individual issue and it is really challenging.
And I know myself in a way, I was for example on one therapy for my multiple sclerosis beta interferon, okay?
And that was having impacts on me side effects wise.
Whether it helped my MS, it's marginal.
I don't know.
So I started this other medicine called naltrexone, but I was taking low doses of it.
That was not clinically trialed and it was actually an off -label prescription.
And in many ways, that is the journey that a patient will go through to decide whether they're going to try a new therapy or not, because they're going from the known to the
unknown.
And how do you take that risk?
Do you stop?
what you're currently doing with a known progression, let's say, and stepping into the void, wondering whether this new medication will actually benefit you, but it could
actually cause you damage.
It could actually make your illness worse.
And so for example, when I was on that beta interferon, I got sarcoidosis during that time period, which is another autoimmune illness.
are they linked?
Maybe.
It could have been a possibility that I got that as a result of being on that therapy.
I don't know.
And it's just like now, like you were saying earlier about the different medications that are available.
I had used all the medications that were there for spasticity, which is one of the symptoms of MS where the muscles just aren't doing what you want them to do.
And the side effects of those medications were too much for me and they didn't actually give me any benefit.
So then I tried cannabis when I was on a holiday in California and I found it transformational.
It actually just changed the way my illness was.
Came back to Ireland and I had to go through the challenge of trying to get this through the health system in Ireland.
I did get it.
It cost me a ferocious amount of money at the time, but it was worth it.
Then I had to get a ministerial license to import it from the Netherlands so that I could get one that
better for me because of the side effects of the first one.
Now I can get it in my local pharmacy.
So, but I, many ways I was actually the trailblazer for that with my neurologist.
He had not given this medication before.
Right.
And so how do you make that decision?
And you have to have, like you were saying earlier, ruled out the other therapies first to say that they're not effective.
having to go through all the side effects and impacts of those things, right?
And then switching over to something that is, some people are very negative about, you you've got this negative association with cannabis, that it is the gateway drug and you'll
end up being on cocaine and heroin.
And that's not my experience.
I still take the same dosage I've took for the last four years.
So, you know, it's not getting more.
It's probably getting less depending on the circumstance.
So,
And then if somebody is going into a clinical trial, those are the same decisions, right?
They're still making those same decisions, those same pathways.
The difference is maybe, and I think in the clinical trial, is that if the information systems that that trial is using for sharing with the participants what this medicine may
do, what they think, how it will help them, if that is very transparent and very
communicated in the language of the patient, it makes it easier to make that decision, but it's still a decision and it could be the wrong one.
And you have to live with that consequence.
But the same is true when you're talking about which medication to take of the traditional medicines.
So there's maybe 13 or 14 different medicines for multiple sclerosis now.
Which one do you choose?
it's almost the same decision pathway.
It's just that the clinical trial is maybe a bit more unknown.
But remember to get to that point where you're testing for patients who have the illness, right?
You've already gone through phase 1 and 2 and you're now in 3 and maybe at stage 4 in the clinical trial system.
it has been tested a bit more.
there's a little bit more certainty in it.
But I think the patient community, people living with illness are not necessarily aware of that research pathway and how they are fitting into that pathway.
And I don't think that's really discussed so well with patients.
And in that absence of knowledge,
There's a vacuum that can be filled with all sorts of stuff from social media that can tell you things that are completely untrue.
And that's where I think communication again, going back to that very important aspect is how you communicate what you're doing, why the trial is at this stage, why you are, how
that participant, that patient is fitting into the trial at this stage.
And that's where I think having
People from the patient community involved with how a trial is designed and structured from the very beginning helps to ensure that you don't have that void or vacuum that can
be filled in by bad actors.
Yeah, that's actually bringing us back to my story when I told you about what I am doing regarding how I was super surprised when I first started working in the clinical research
space to realize that the, let's say, must -have thing when you plan clinical trials is to go and speak with the key opinion leaders.
And the key opinion leaders are some people that are not even speaking with patients anymore.
I there are people behind publications.
Obviously, they're brilliant people.
They've done a lot of research.
There are people that the community follows.
But then again, they're not speaking with patients.
So like you said, speaking only with key opinion leaders and sites and maybe like not enough sites, let's say, because sometimes if you speak with many, with multiple per
country.
You will still get to let's say to the truth somehow But speaking with just a few and just in one or two countries out of 20 That doesn't actually give you a very good understanding
of what the patients are going through in their own country And that's that's something that we discussed with you.
It's absolutely critical So bottom line if you have to summarize what is the impact of a local standard of care?
on making a decision to participate and stay in a clinical trial from your perspective.
I think if you've got a poor standard of care where you are, you are not going to be involved in a trial because you have an inherent mistrust of the healthcare system.
And it doesn't matter who gets involved with it, it is always going to be coloured by that negative experience that you've had with the system itself.
So how can somebody this
third party coming into you saying, we've got this wonderful thing.
We want to try it.
You know, it's going to really make a change to your life.
Hopefully if it all goes well.
These guys are telling you a load of nonsense.
How do you know that that's the truth?
Okay.
So that's where every person that you meet with in a healthcare system is pivotal in ensuring that we have very good research.
If you end up meeting bad nurses or
And I know my experience is, yeah, yeah.
So, you know, this is where everybody is the face of the healthcare system and everybody has a role in that.
And if they don't see that, then that's going to be a big challenge to getting that diversity of voices within the participants in your study.
you're just not going to get it because of the clinical experience of the individuals.
So if you don't have that standard of care, if it's not uniform across the network, what you're going to end up happening is the people who get the best standard of care are those
who are on private health care, who are paying the top dollar for their consultants and who are going to the private hospitals.
They get the better standard of care because it's a business and they need to attract customers in.
Whereas in the public system, it's not a business.
It is like taking parcels and we're moving them through the system and it is almost exhausted with its engagement with the people.
just wants to move them through the system.
And so you have that coldness there.
You can get pockets of light in it and you can get pockets of warmth and you see those as exceptional.
Right.
But how are you going to get those patients
involved in a clinical trial if their perception of the healthcare system is that they are treated like an object and not as a human being.
And so they're not going to get involved in the clinical trial.
And so it's going to have a negative impact on diversity.
And that is the problem with healthcare.
If you don't have the clinical trials done on a really representative population, you're not getting the right medicine.
You're not understanding the impacts.
because the diet of somebody who is on the public system can be different from the person who's in a private health care system.
They're physical food that they're eating.
And that actually can have an impact on how the medication is delivered.
Or if you have stresses in your life because of your financial situation or the fact that you're struggling with housing or that, you know, your your community isn't able to
support you.
But if you're from a more advantaged group, right?
you have your housing sorted, you have your income sorted, and you also have a support network of people because they do have the time and the resources maybe to help you.
So all of those external things actually impact on how somebody can actually trust somebody who is coming in with a clinical trial.
And so that's where I think it is so important to...
level that playing field, make sure that everybody has the same type of health care, the same systems, the same processes, the same standard of care is being applied to everybody.
And I think that's where we have the problem.
And we won't get that diversity, but we also won't get the retention either, right, because of that.
And we it's a struggle.
But if we include all
representatives of all the patient community, right, then I think we will have a much better result.
And the medicine and the healthcare that we are delivered will be of a higher standard
Yeah, and I just want to add something here Robert to what you said include the patient society as early as possible because sometimes we do that but like I think in my previous
episode the lady she was saying I've been included in working on the trial design redesign not design the trial redesign because the company was struggling finding the patients so
they included
like their patient organization to help them.
How can we change that so that it starts recruiting patients?
So it's rather, it's better to work on the design early, as early as possible with patients and patient communities, rather than work with patient communities, but on the
redesign.
It's better for patients, it's better for the industry.
Robert, thank you so much for this positive conversation.
And honestly, I lately, I've experienced some health issues myself and
Let's say, I've experienced like in the past as well, but lately, let's say for a longer period of time, I was also not feeling so well, having fatigue and like, I mean, yeah,
different things.
And I was exactly thinking about people like you, because you say things like, you have to see the things in the better light, the glass half full, not half empty.
But once you experience either pain
fatigue or tiredness, it's so much more difficult to see the glass half full.
So you're the true superheroes to me and I'm very very thankful for your time, for this inspiration and for your positivity.
Thank you.