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Navigating Clinical Trials with Nathalie Riebel of Oncospire | The Eye Believe Podcast · The Eye Believe Podcast

0:03
welcome back to the Eye Believe Podcast
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I'm Megan and I am joined today with Nathalie Riebel
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from Oncospire Consultants
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hi Nathalie hi Megan
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thank you so much for having me
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thank you so much for being here
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we are so thrilled to have you as a guest today
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so first
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tell us a little bit about what we're gonna talk about
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and then tell us about your background
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yeah so
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what I'd like to talk about today is really
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the patient voice in clinical trials
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clinical trials have changed
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so much in the last 30 years
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and we're at a point now where
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you know this time last year
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the FDA approved 14 oncology drugs
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believe it or not like in the first quarter of 2024
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and a lot of those require patient voice
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so I'd like to talk about the patient voice today
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I love that thank you for being here
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I mean I think this is such an important topic
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and so relevant to everyone in our community
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agreed and I'll just introduce myself
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and maybe talk a bit how I met melody
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who's the you know
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the founder of, well
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the president right now of A Cure In Sight and founder
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yeah and founder
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so my name is Nathalie Riebel
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I am now the owner and founder of Oncospire Consultants
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and I spent 30 years working for large pharma
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small biotechs
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and decided last year to go off on my own and create a
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firm dedicated to
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really accelerating the development of drugs
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and improving access to new medicines
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because I found that there was a gap in
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you know how small
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how long
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small companies took to get their medicines to market
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and I have an expertise in clinical development
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operations and project management
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and I wanted to give them kind of a fit for purpose
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consulting service
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so that they can get their drugs and uh
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move forward in their portfolio
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with the same advantages
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that a large pharma would have
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that's amazing well
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no that's amazing
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it's the dream
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yeah it's the dream
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it's the hope so I've been working with a
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with a few really small clients that
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you know university professors that develop
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that discover drugs in their laboratories
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and want to take it onto the market
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but getting on into
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like writing an investigational new drug for the FDA
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a dossier and doing all the steps that are required
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by the regulations in our industry
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you know
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take knowledge and somebody who's never done it
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it's daunting and overwhelming
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yeah I mean
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I wouldn't even know where to begin to start
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and for patients you know
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kind of from the patient's point of view
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it's clinical trials is like I said
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you know 14 oncology drug approvals in the first uh
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half uh
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like the first quarter of uh 2024
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if you think about it those drugs started
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eight to 10 years ago
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so somebody who right now
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might be in remission of their cancer
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might have contributed that study eight to 10 years ago
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so it's not
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it's not an instantaneous industry where
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you know what you do today
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you will see tomorrow or in a month or in a year
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you know it'll be
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it might take up to
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five years before you see that drug come on the market
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patients are so important
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and I think in this in this
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I mean they are the
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the participants in our trials
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and their voice is I find
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not heard enough
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but I I understand that
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when you've just been diagnosed
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with a life threatening disease
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you know
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clinical trials is not the first thing you wanna hear
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right and it's not really
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you know you're overwhelmed
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you're grappling with fear uncertainty
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the need to make impossible decisions
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the last thing is
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kind of going into something that feels unknown
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uncontrollable or even more uncertain
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and yet like I said
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clinical trials are you know
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a way of getting these drugs
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which we're developing to the patients um
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early and in a free accessible way
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with very strict oversight from the doctors
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it's an advantage
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but I understand from a emotional point of view
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it can be really hard and the process is confusing
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there's a lot of paperwork
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that's why you know
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when I met melody
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groups like a Cure Insight actually help patients
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help connect clinical trials and the patients
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you know and I think that's such an important
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an important connection and gap to fill no
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I totally agree so
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I met melody when I was working as a vice president
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of a company
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that was developing a drug device for ocular melanoma
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and she had invited me to the
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her patient advocacy
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I guess conference to talk about our protocol
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and to kind of demystify clinical trials
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and our protocol in particular um
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for patients and I thought
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that was such an enriching experience for me
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because I got to learn what
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like how patients view the clinical trial how patients
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how it affects their lives um
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you know often as as scientists and drug developers
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we're developing a protocol that you know
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gets us the data we need to go back to
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like the FDA or other regulatory agencies
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to tell them how effective or safe the drug is
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but in there the patient's
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flexibility or kind of way of life has to fit in right
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if we say oh yeah
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we're gonna take
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like blood samples every three hours for like
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24 hours well
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that means somebody has to miss their job
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has to find childcare has to
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you know make arrangements to be there um
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maybe make arrangements to get picked up
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dropped off and so forth
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or maybe they can't stay overnight somewhere
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because of you know
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their caretakers or their you know
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mothers and fathers of
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of small children and stuff and that's why the
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the trend right now
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and what I heard at my last conference is really
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to get patients involved when we design these studies
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so get their voice heard and say hey
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you know what I'm happy to go to my local lab
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core and get samples drawn
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you know but I'm not happy to
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go to the hospital where you're running the study
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and actually stay there for 24 hours yeah
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that makes total sense and
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you know it's
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it's important for us to you know
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hear that as drug developers
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because
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there's such a small fraction of people that actually
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go on clinical trials it's a shame
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because everybody should
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know about clinical trials a little more
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to make a little bit more of an informed decision
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sure I wanted to also kind of demystify what
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what clinical trials are such a
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I think a stigma right
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you you hear like people are Guinea pigs and people are
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you know
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test subjects and there's movies made about it and
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you know there's memes made about it
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and it's actually
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all we want to do is make sure
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that the drug is worth developing
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and as good drug developers
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our motto is fail fast because we want to be able to
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if a drug isn't working
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we want to be able to shut down that program right away
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and not expose people to that drug any longer
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that they than they need to be
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what do you know about clinical trials
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so I'm a layman when the in this area uh
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not a lot I know
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like you said that it's
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you're testing a drug to see if it's effective
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and that's sort of my extent of the knowledge
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and I can imagine as a patient
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it is scary
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because you're already facing a diagnosis for a cancer
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that you probably don't know anything about
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and then now they're saying oh
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do this test
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drug that you also don't know anything about
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so I can't imagine that
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that would be a very overwhelming
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and scary place to be
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and I think bringing them the information of what it is
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and what they can expect
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is a wonderful thing to kind of
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help guide them through this
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so that's why we're so happy to have you here
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oh thanks
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thanks and
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you know I think most people do have like
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basic information like you do
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and I think it's that's great
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that's a such a great start already to know
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you know that it is a process for which
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that we use to make sure
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new medicines are safe and effective
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um and
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you know we
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we always tell people
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if they look in their medicine cabinet
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you know the Tylenols
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the Advils the Aleves and all the
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all those went through clinical trials
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all those had to be tested to make sure they're safe
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and now I mean
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people don't even think twice
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right when you take an Advil and
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and but there's people that at one point
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we didn't know what the dose was for Advil
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or how effective it would be
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or if it caused any
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what the percentage of side effects would be right
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yeah and now we don't think twice right
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the goal of you know
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the regulators
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and the drug developers are always to get more benefit
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than risk so more good than
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you know bad effects
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um for the drugs
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and that's really what they look at
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when they decide whether a
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a product is acceptable to go on the market right
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they look at
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they kind of tally up how much good are you doing
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and how much
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how safe are you so are you doing anything bad
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and what's the what's the tally
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and if your bad kind of over shadows your good
11:21
they don't approve it
11:23
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11:41
I was thinking of maybe providing like
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a few basic questions that
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you know you guys can ask as advocacy groups or
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you know the patients can ask
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if they want to go into clinical trials
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if they get a diagnosis
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and usually the doctor will allow the patient
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you know some time to kind of come to grip with the
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the diagnosis and
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you know and everything
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but patients should feel empowered to ask
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you know is there a clinical trial
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like what is the treatment kind of regimen that I'm
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that I'm destined for given
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you know the
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the phase of my disease
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and is there clinical trials that could help me
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and and
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you know the basic questions would be like
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what is being tested and why
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cause sometimes it's a it's a device
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sometimes it's a drug it could be an injectable
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it could be an IV it could be a pill
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you know so
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you wanna know kind of what it is
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and why it's being tested
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what are the the risk
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I mean these are our terms
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I say risks and benefits but what do we know from
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so far from the medicine that has been tested
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what is the good it's that you've seen
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and what is the bad that you've seen right
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will the trial affect my quality of life
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my day to day activities like
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what is the normal
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day in the life of a trial participant look like
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so do I have to come every day
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do I come once a week do I come once a month
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and if I do volunteer for the trial
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what happens if I leave the trial
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so you know
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that's a really important question because you can
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you just life happens right
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anything could happen
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it doesn't have to be something that
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you know
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the drug doesn't work that's related to the drug
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you know you could have a really joyous occasion
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where somebody's getting married in your family
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and you have to be away for
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you know three weeks or two weeks um
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destination weddings are so in haha now right
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I'm a fan too
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you have to ask if there's any costs involved
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will you get the data when the trial ends as a patient
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I wanna know kind of what my data went towards and um
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what kind of care will I receive
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so sometimes
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you know the trial might not be done by your doctor
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it might be another doctor so
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you know the rules are that
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whoever's doing the trial needs to inform
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your primary care physician that that's
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that this is happening so that
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you know
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everybody's aware that you're on
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a medication that isn't approved yet
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yeah that makes total sense
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and that's something that I didn't
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didn't even think about is
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how do you do this program
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and relate it back to your doctor
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or your team of doctors that communication
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what does that look like
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yeah so um
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there's now rules and in your so we have
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we give the patients what we call informed consents
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and those are usually unfortunately
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now they've become like 14 page documents um
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but in there it says that
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we are gonna contact your primary care physician
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and any other physician you want us to contact
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to be able to tell
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them that you're participating on this trial
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because for some medications that are developed
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you know you can't have
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like citrus fruit or green vegetables or Poppy seeds
15:40
you know or you can't have certain other medications
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so if you have a rash and you go to your doctors
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you're on a certain clinical trial
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he might not be able to prescribe just any
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you know dermal cream for your like minor ailments
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yeah that makes sense
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so they all need to be on the same page
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and you need to have everybody
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aware of what's happening
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and communicating with each other
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yeah and
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you know the doctors that do the research
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they have to be available to the patient constantly
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to be able to ask any questions
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and I think patients have to realize that
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oh you know um
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I don't know I
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I sometimes when I'm tired get a twitch in my eye right
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if I was on a clinical trial
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and the twitch started getting worse
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I would definitely call the doctor and say hey
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you know this is normal for me
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but it's it's gotten like it
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it happens usually once a week now it's like every day
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right and it could be something as
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as just um
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benign or something very you know
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relevant that we have to understand
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so you really need to be vigilant
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and pay attention to your own body
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because I think a lot of us are so busy in our
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daily life that we don't listen to our bodies
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and so to really make that a point
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that you have to pay attention
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that is something that you really have to be aware of
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going in
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yeah and if you think about it
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I mean you're again
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going back to you know
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the first point we talked about
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you've just been diagnosed with cancer
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or another disease
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you don't know what it feels like to have cancer
17:29
you're now introducing so you're saying
17:32
you know is it my cancer that's doing this to me
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is it the drugs I'm getting
17:38
you know that's doing this to me
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um you're right
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you have to be hyper vigilant and
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and communicate a lot with um
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your doctors
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and I think this is also where your caregiver comes in
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because sometimes
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they'll see something that you don't see
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and so making them aware of hey
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if anything looks out of the ordinary
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let me know because a lot of times
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you know you'll say something to
18:07
you know
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your spouse or your friend or whoever and they're like
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I do that and you're like
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oh yeah
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you do hahaha
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that is so true and
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you know you're right because the
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you know a good clinical trial will also
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usually have caretaker information
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and I know a lot of the advocacy groups like you guys
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you know often provide the caretakers with information
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so that they feel empowered
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and kind of part of the process
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and just seen we see you and we thank you
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yes because the caretakers are such a huge part and
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and that's why you know again
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going back to when we're designing these trials
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and just before they even
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you know before even patients can come on the trial
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it's um I know for
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for the companies I've worked for and for the
19:10
the clients I worked for
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it's really important to get in touch with
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advocacy groups and patient groups
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to say hey
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we're thinking of you know
19:22
designing the trial like this
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it's gonna last you know
19:26
six months or a year or five days and and this is
19:31
you know how we wanna do it
19:34
does this make sense to you
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with everything you have to grapple with with
19:39
you know learning about a new disease
19:41
um becoming incapacitated where your caretaker has to
19:46
you know step in to drive you everywhere
19:48
or to make your meals or you know
19:50
so forth I think it's really important for
19:55
for us to incorporate that patient voice
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um when we're even before we go to the FDA and and say
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hey we wanna do this yeah
20:06
absolutely and you know
20:08
most patients like I said
20:11
they
20:11
they don't know it exists or right away they say no
20:14
you know and they don't have to
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even patients that say no to clinical trials
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shouldn't say no
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to be able to be on a panel that looks at a clinical
20:25
trial
20:26
oh so that's interesting
20:28
so I haven't heard about that
21:02
yeah so there's
21:03
there's now companies that do that that put together um
21:07
patient panels to to look at patient documents
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you know we want to is this consent too complicated
21:18
you know do you understand this consent
21:22
because most of them like I said
21:23
are because of you know regulations
21:28
they become really
21:29
really long because we have to describe everything
21:34
all the risks all the benefits
21:35
but also every single test that we do in the study
21:39
and you can imagine
21:40
if it's like a six month study or a year study
21:44
there's a lot of tests
21:47
so um
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it's you know
21:51
they can just be on a panel and we ask them
21:54
does this consent look good
21:56
do you think this financial
21:58
stipend is acceptable for patients
22:01
you know we pay for maybe like just
22:04
you know $15 of parking and you know
22:08
a day of daycare some patients will say no
22:10
you know
22:11
I have to spend my whole day there I want lunch
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you know for me and my caretaker because
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you know I'm missing work and and things like that so
22:22
we need to have their perspective
22:24
so that it does become more accessible
22:28
so that drug development doesn't take so long
22:31
I love that I love that you're listening
22:34
and taking their consideration
22:36
not only just listening you're seeking it out
22:38
you're going out and saying hey
22:39
we want you to tell us and I think that's wonderful
22:43
yeah and I think more companies are trying to do it
22:46
it's what we've been asking companies to do
22:51
but again for a small
22:53
you know a small biotech
22:54
which you know
22:55
is maybe three guys in a garage that are just
22:58
starting out it sometimes it's
23:01
you know
23:02
how do we how do we get these patients input
23:06
you know and I think that's where advocacy groups like
23:10
like you can help us connect with patients and say
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hey yeah
23:15
we'll we'll ask somebody to look at the consent for a
23:19
for a fee
23:20
but at least it won't be like a huge panel of people or
23:23
you know that will
23:26
that might put a financial burden on the small company
23:30
yeah that's awesome
23:32
and also I think there's there's so many other things
23:35
you know we wanna make trials
23:37
you know I've been talking about making trials
23:39
less burdensome for
23:42
for patients but also
23:44
sometimes the eligibility criteria are really strict
23:49
you know
23:49
and and sometimes the FDA asks us to be really strict
23:52
but sometimes
23:53
it's the company who's being really strict and
23:55
you know
23:56
we want to make sure that everybody is represented
23:59
and that we we get to
24:03
to all types of patients you know
24:05
right now you know
24:07
a lot of the
24:08
the sites that do research are academic sites
24:11
or large hospitals and large cities
24:14
but what about the you know
24:15
small town of like 4,000 people in rural Montana
24:22
how do they get trials yeah
24:24
absolutely so and
24:26
and I know there's been efforts
24:28
so I don't know if you ever heard of Angel Flights
24:33
I have um
24:34
one of my neighbors actually did one last year
24:37
and I think melody and I had talked about this
24:41
because their flights that
24:43
their volunteer pilots
24:45
that will take patients from wherever they live to the
24:49
the treating hospital that they have to go to
24:53
so for one of the top hospitals
24:57
kind of
24:57
in ocular melanoma is Jefferson in Philadelphia
25:04
well if you live in
25:05
you know
25:07
a small town in Missouri how do you get there right
25:11
it's a long drive it's an expensive flight
25:13
so these pilots actually take the patients um
25:17
to get care I love that
25:19
that's amazing yeah
25:21
you know having talked about all that I
25:23
I feel like you know
25:25
we could spend a whole day
25:26
talking about all the questions
25:28
that patients could ask for
25:30
clinical research but they should
25:34
you know if people
25:35
are curious about clinical research
25:37
they need to reach out to
25:39
you know
25:40
melody who has access to people like me who for
25:45
you know I do it out of compassion for these patients
25:50
happy to answer any questions
25:52
you know and
25:52
and they should not feel like clinical trials is
25:55
kind of a last resort
25:56
but it's an opportunity
25:58
that they have to contribute to us
26:02
understanding the disease
26:03
but also understanding why treatments work
26:07
and why they don't you know
26:08
sometimes we think we have
26:09
like a breakthrough treatment
26:11
and it just doesn't work I'm sure that it's a big
26:14
big decision to do one
26:17
and then if you decide you're going to do one
26:20
how do you decide which one
26:22
yeah that's a great question because there are a lot
26:27
and I know there's a lot of sleuthing
26:33
um I think from patients
26:35
you know sometimes patients will uh
26:39
discover the site clinical trials.gov
26:42
which is a
26:44
a mandatory public website that the FDA has created
26:49
which lists every single clinical trial done in the US
26:55
and some abroad as well you know
26:57
they will try to interpret
27:00
but it's a very scientifically based site
27:02
you know
27:03
it gives you the scientific description of the trial
27:07
and the eligibility criteria
27:09
and for some I mean
27:10
they totally can manage with that
27:14
but I think it is
27:16
uh trying to get to the advocacy groups
27:19
trying to be connected to
27:21
maybe like a nurse navigator at um
27:25
the site so
27:26
there is a lot of sites that have nurse navigators
27:29
that will look at the patient's profile
27:33
and say yeah
27:34
so in you know
27:36
head and neck cancer there is right now 20 trials
27:40
but your specific profile kind of fits these five and
27:47
you know three of them are not close to here
27:51
and two of them are close to here
27:53
so that narrows it down for you yeah
27:56
so how how do you find a nurse navigator
27:59
I think that's still it's it's an evolving position
28:03
so it's relatively new you know
28:05
it's been for the last maybe seven years
28:08
we've had these nurse navigators
28:10
sometimes they're associated with large hospitals
28:14
so like Jefferson has some
28:17
um here in Philadelphia and um
28:19
other large large hospitals
28:22
but for a small rural hospital
28:26
I would think that again looking on the websites
28:31
I know that certain advocacy groups have chat rooms
28:36
so I'm getting on some of the chat rooms
28:40
also looking at if you do go on clinical trials.gov
28:46
there are phone numbers there of study coordinators
28:50
that are running the trial
28:52
and they can also help saying
28:54
I just got diagnosed with head and neck cancer
28:56
I'm interested in getting onto your trial
29:00
is this a trial for me
29:02
and I know as when I was an executive
29:05
you know a a VP of clinical operations
29:08
I would often get
29:09
emails from patients that found us that way
29:12
and would ask you know
29:13
is this for me and we would refer them to a site or
29:20
you know a doctor that could talk them through
29:23
privately and confidentially
29:26
kind of through their disease
29:27
and what would be good for them and so forth
29:30
that's fantastic
29:32
because I think that we need all the help we can get
29:35
yeah yeah
29:36
it's any diagnosis of anything is
29:40
is difficult and usually
29:42
it's by surprise and emotions and things to deal with
29:48
your whole life just has changed on a dime
29:52
absolutely
29:53
and it's a scary and overwhelming place to be
29:56
and so just having somebody step up and say hey
29:58
I can help you sometimes that's bigger than anything
30:03
yeah and there's
30:04
I mean look
30:06
there's people there
30:07
there's caretakers that have gone way beyond the
30:13
kind of finding an advocacy group for their
30:18
their child with a rare disease
30:20
you know
30:20
I had the chance to meet somebody this weekend who
30:23
she actually her child had a rare disease and um
30:28
she didn't find any support
30:29
so she created her own advocacy group
30:32
and then she found a drug that was stop
30:36
that they had stopped development on
30:39
for this disease because it wasn't profitable
30:42
and she actually formed a team
30:45
and they are developing this drug
30:49
wow that's amazing
30:52
yeah there is ways of
30:55
of getting things done I mean
30:57
that's an extreme case
30:58
but there's a lot of non profits and
31:02
you know whether the advocacy groups
31:04
or new non profit that want to
31:06
connect patients to trials or help patients find
31:10
you know the right care for their disease
31:14
so I think this year is really gonna be the
31:17
the year of the patient voice
31:19
I love that and in that line of thinking
31:23
we have a registry that patients can join our registry
31:27
you can find it on our website
31:28
a current site.org
31:30
and if you don't Wanna do a clinical trial
31:33
or it's not for you
31:34
and you want your voice to be heard
31:36
you want your data to go into helping
31:39
please join our registry
31:41
we're about to publish the findings
31:44
so I we're going to have a deadline day coming soon
31:47
we talked about it this morning
31:49
and I don't think we've
31:51
picked what the deadline day will be
31:53
but it's going to be coming up
31:55
and if you want to be included in that
31:57
before we publish we'll post more information
32:00
but go to our website and do it now
32:02
don't wait and you can be a part of it
32:04
that's fantastic because those registries
32:08
you know before they
32:09
they weren't given too much weight
32:12
you know by like regulatory agencies
32:15
but in the last three years
32:17
what we're calling real world evidence
32:19
you know of these registries
32:21
and of really
32:23
all the data that's happening to patients
32:27
it's it's becoming more utilized
32:29
you know and we're
32:30
we're looking at it
32:31
and we're also using it to design trials
32:34
so I love that I love that
32:36
and anytime
32:37
a patient can get on a registry and help science
32:40
without it's another way to contribute
32:44
yeah and a way to contribute that
32:46
you don't have to do anything
32:47
except give a little bit of your time
32:50
and if you have any questions about the process
32:53
or you're not sure how to sign up
32:55
reach out to any of us and we'll walk you through it
32:58
I love that yeah great
33:00
well it's been such a pleasure
33:02
having this conversation with you
33:03
you know talking about one of my passions
33:06
and again I give my time to you and melody
33:10
whenever you want to help with
33:12
support your patients and things like that
33:15
and in the meantime feel free to reach out to me
33:18
we appreciate that more than you know
33:20
and thank you so much for taking
33:22
the time to come and talk to us today
33:24
and just talk about the importance of a clinical trial
33:27
and I think the questions to ask are so important
33:29
because somebody might say
33:31
here are the reasons you should do a clinical trial
33:33
but
33:34
that doesn't mean they know how to go about starting
33:37
the process so
33:38
I love that you gave some insight into
33:40
what to look for what to ask
33:42
I think that's really a great place for people to start
33:45
well thank you
33:47
I had fun doing it yeah
33:49
I this has been a great conversation
33:50
so I'm thrilled to have you here
33:52
and hopefully we'll have you back
33:54
soon to talk about something else
33:55
anything you want let us know
33:57
we're open OK great
33:59
we love to chat and for everybody watching
34:02
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34:39
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34:40
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