May 29, 2025 • 6 mins
A DYING MAN JUST WANTS TO TRY I realize that we are ALL dying but my guest today is on a fast track none of us want to be on. Elijah is 23 years old and is fighting for his life. He was only six years old when he was diagnosed with a fatal and incurable disease – Duchenne muscular dystrophy. The disease has robbed Elijah of the ability to walk. He’s losing the use of his hands and arms. He likely only has a few years to live. There’s a potential genetic treatment for his condition that is sitting on the shelf, all because of government bureaucracy. It could save his life, and others like him. That’s why Elijah is advocating for the Right to Try for Individualized Treatments. Elijah he has become a strong advocate for Right to Try for Individualized Treatments (which we also call Right to Try 2.0). There is a treatment that could help him, but government red tape is preventing him from accessing it. So he has made it his mission to advocate for treatments like these/He also started a nonprofit, wrote a book, consults for biotech companies, and is working on a screenplay about his story. Read this story about his journey here. He joins me at 12:30 to talk about it. Find out more about Right to Try by clicking here.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
A young man who has had more than his share
of travails. Because Elijah Tracy was diagnosed with Dushane's muscular
dystrophy as a child, and over the intervening years he
is now twenty three years old, he has dealt with
the physical ramifications. But in his to his credit and
I'm pleased he's on the show, he's taken something that
(00:24):
may have devastated someone else and has turned it into
working very diligently for something that could help not only
himself but so many other people.
Speaker 2 (00:31):
Elijah, welcome to the show.
Speaker 3 (00:32):
First of all, thank you so much for having me talk.
Speaker 1 (00:35):
To me about Dushane's muscular dystrophy. First of all, for
my audience, you may not know about the disease. We've
all heard of muscular dystrophy, but what makes do Shane's different.
Speaker 3 (00:44):
Yeah, So, Deshrene muscle distrophy is a genetic muscle waiting
disease that is fatal. So what happens is as time
goes on, they could start to lose muscle. So when
their little kids, they'll probably fall more frequently, walk on
their costs and is very common, and eventually they'll lose
their ability to walk around ages nine through twelve, then
they'll start to notice upper limb function decline and eventually
(01:06):
they won't be able to lift their arm at all.
And the worst part about the disease is that your
heart is also a muscle, and also your diaphragm is
a muscle which is responsible for breathing. So about your
heart and pulmonary functions start to decline, which makes it fatal.
Speaker 1 (01:22):
So what, you're twenty three years old, you've had this
diagnosed for sixteen or seventeen years?
Speaker 2 (01:27):
Am I correct on that?
Speaker 3 (01:28):
That's right?
Speaker 2 (01:29):
Yes, So what is your prognosis from here on out? Elijah?
Speaker 3 (01:33):
Well, I mean, if we don't have any medical intervention,
the average life span historically is twenty five so you know,
but I think that we're going to develop pears and
rid the public treatments, and you know, science is moving forward,
you know when keep increasing that lifespan and hopefully cure
the disease.
Speaker 1 (01:53):
Well, talk to me about right to try and why
you've become such an advocate.
Speaker 3 (01:57):
Yeah, I think it's really important that patients have been
legal pathway. I think getting drugs that aren't available yet more,
that are going through the clinical process, clinical trials. You know,
developing a drugs it takes a good amount of time,
and patents don't have time when they're dealing with fail diseases.
So you know, if they're you know, close to the
end of their life, I think that they should have
(02:18):
the option to at least try something rather than just
nothing at all and die.
Speaker 2 (02:24):
So what what are you looking to try? Are you
aware of treatments?
Speaker 1 (02:27):
Are you looking to get access to information about treatments
that might be available? I mean, you have specifics in
your case, even though you're making the argument in a
broader way for right to try. Are there things in
the pipeline that you think might be able.
Speaker 2 (02:40):
To help you? Oh?
Speaker 3 (02:41):
Absolutely, I definitely think there's drugs that you know, I'm
eyeing that I think that are are very promising that
I'd love to get access to, you know, things that
are a little bit further down the line, like five
years looking at like new next generation gam therapy kind
of you know, biotech that I think is going to
be very promising and that you know, that's the perfect
use of right to try there because with deshend it's
(03:03):
very specific to your mutation. So me and somebody else
as DITIOND are going to have a completely different you know, mutation,
and that's going have to be treated differently. So that's why,
you know, right to try for individualized treatments makes a
whole lot of sense.
Speaker 2 (03:17):
Didn't the federal government pass right to try? Or am I?
Am I misremembering this?
Speaker 3 (03:21):
No, you're absolutely correct, and Trump administration did pass in
twenty eighteen. But this right to try, what we're doing
here for individual X treatments is we're going one step
further and we're not requiring that safety data so that
patients can go today instead of having to wait for
that safety are to be complete. So this gives them
even faster access to medications.
Speaker 1 (03:42):
Okay, good, because I was I was kind of confused
as to why this was still an issue, but that
does make a lot of sense. You know, the real issue,
and people may not know this, is that a drug,
a successful drug, being brought to market takes anywhere from
six to about ten years because of the drug approval process.
So when you're in allized this situation, you don't have
six to ten years to sit around and wait for this.
(04:02):
What kind of action are you looking for here in Colorado?
Speaker 3 (04:05):
Elijah, Well, I'm very very happy with Colorado passing this bill.
I actually testified in this and also vissembly, and the
government just recently signed it into law. So I applaud
the Colorado government for making this happen, and I'm hoping
that doctors become more aware of it and patent as well,
(04:25):
and that they can get access to treatments to hopefully
save their life.
Speaker 1 (04:29):
I Elijah, I'm going to be saying a prayer for
you and for the mission. I think that this is critical.
I spoke about my friend David, who had an extremely
rare form of cancer, and his attitude is I want
to be even if it doesn't cure me, it can
help the next person, and that can help the next person.
So this goes well beyond your fight, although your fight
(04:50):
obviously is significant and incredibly important to helping your fellow man,
is that also a part of it for you?
Speaker 3 (05:00):
And I mean put it this way, if it meant
that I had to die to save everybody else with dishant,
I would I want to see everybody win with this,
and I want the future generations. I never even know
this this disease existed.
Speaker 1 (05:13):
So uh, Elijah, Stacy is my guest, and I put
a link to both some information about Elijah and his
story that is really really good.
Speaker 2 (05:24):
I watched it this morning.
Speaker 1 (05:25):
I read the website, and then I put a link
to Right to Try and the Right to Try Act
just so people can read more about this. This is
one of those things, Elijah. I mean, do you ever
meet people that say, no, this is a bad idea.
Speaker 3 (05:37):
You know, it's very hard to find someone that doesn't agree.
It's very bipartisan, but there, you know, there are some,
but they're very, very very hard to find.
Speaker 2 (05:47):
Well.
Speaker 1 (05:47):
I wish you the absolute best, Elijah, and success in
this because even you know, if things don't go the
way they want for you, you are going to help
someone else in the future, and that helps everybody. I
appreciate you making time for me today.
Speaker 3 (05:59):
Thank you so much for how with me. I appreciate it.
Speaker 2 (06:00):
Thanks Elijah,
A young man who has had more than his share
of travails. Because Elijah Tracy was diagnosed with Dushane's muscular
dystrophy as a child, and over the intervening years he
is now twenty three years old, he has dealt with
the physical ramifications. But in his to his credit and
I'm pleased he's on the show, he's taken something that
(00:24):
may have devastated someone else and has turned it into
working very diligently for something that could help not only
himself but so many other people.
Speaker 2 (00:31):
Elijah, welcome to the show.
Speaker 3 (00:32):
First of all, thank you so much for having me talk.
Speaker 1 (00:35):
To me about Dushane's muscular dystrophy. First of all, for
my audience, you may not know about the disease. We've
all heard of muscular dystrophy, but what makes do Shane's different.
Speaker 3 (00:44):
Yeah, So, Deshrene muscle distrophy is a genetic muscle waiting
disease that is fatal. So what happens is as time
goes on, they could start to lose muscle. So when
their little kids, they'll probably fall more frequently, walk on
their costs and is very common, and eventually they'll lose
their ability to walk around ages nine through twelve, then
they'll start to notice upper limb function decline and eventually
(01:06):
they won't be able to lift their arm at all.
And the worst part about the disease is that your
heart is also a muscle, and also your diaphragm is
a muscle which is responsible for breathing. So about your
heart and pulmonary functions start to decline, which makes it fatal.
Speaker 1 (01:22):
So what, you're twenty three years old, you've had this
diagnosed for sixteen or seventeen years?
Speaker 2 (01:27):
Am I correct on that?
Speaker 3 (01:28):
That's right?
Speaker 2 (01:29):
Yes, So what is your prognosis from here on out? Elijah?
Speaker 3 (01:33):
Well, I mean, if we don't have any medical intervention,
the average life span historically is twenty five so you know,
but I think that we're going to develop pears and
rid the public treatments, and you know, science is moving forward,
you know when keep increasing that lifespan and hopefully cure
the disease.
Speaker 1 (01:53):
Well, talk to me about right to try and why
you've become such an advocate.
Speaker 3 (01:57):
Yeah, I think it's really important that patients have been
legal pathway. I think getting drugs that aren't available yet more,
that are going through the clinical process, clinical trials. You know,
developing a drugs it takes a good amount of time,
and patents don't have time when they're dealing with fail diseases.
So you know, if they're you know, close to the
end of their life, I think that they should have
(02:18):
the option to at least try something rather than just
nothing at all and die.
Speaker 2 (02:24):
So what what are you looking to try? Are you
aware of treatments?
Speaker 1 (02:27):
Are you looking to get access to information about treatments
that might be available? I mean, you have specifics in
your case, even though you're making the argument in a
broader way for right to try. Are there things in
the pipeline that you think might be able.
Speaker 2 (02:40):
To help you? Oh?
Speaker 3 (02:41):
Absolutely, I definitely think there's drugs that you know, I'm
eyeing that I think that are are very promising that
I'd love to get access to, you know, things that
are a little bit further down the line, like five
years looking at like new next generation gam therapy kind
of you know, biotech that I think is going to
be very promising and that you know, that's the perfect
use of right to try there because with deshend it's
(03:03):
very specific to your mutation. So me and somebody else
as DITIOND are going to have a completely different you know, mutation,
and that's going have to be treated differently. So that's why,
you know, right to try for individualized treatments makes a
whole lot of sense.
Speaker 2 (03:17):
Didn't the federal government pass right to try? Or am I?
Am I misremembering this?
Speaker 3 (03:21):
No, you're absolutely correct, and Trump administration did pass in
twenty eighteen. But this right to try, what we're doing
here for individual X treatments is we're going one step
further and we're not requiring that safety data so that
patients can go today instead of having to wait for
that safety are to be complete. So this gives them
even faster access to medications.
Speaker 1 (03:42):
Okay, good, because I was I was kind of confused
as to why this was still an issue, but that
does make a lot of sense. You know, the real issue,
and people may not know this, is that a drug,
a successful drug, being brought to market takes anywhere from
six to about ten years because of the drug approval process.
So when you're in allized this situation, you don't have
six to ten years to sit around and wait for this.
(04:02):
What kind of action are you looking for here in Colorado?
Speaker 3 (04:05):
Elijah, Well, I'm very very happy with Colorado passing this bill.
I actually testified in this and also vissembly, and the
government just recently signed it into law. So I applaud
the Colorado government for making this happen, and I'm hoping
that doctors become more aware of it and patent as well,
(04:25):
and that they can get access to treatments to hopefully
save their life.
Speaker 1 (04:29):
I Elijah, I'm going to be saying a prayer for
you and for the mission. I think that this is critical.
I spoke about my friend David, who had an extremely
rare form of cancer, and his attitude is I want
to be even if it doesn't cure me, it can
help the next person, and that can help the next person.
So this goes well beyond your fight, although your fight
(04:50):
obviously is significant and incredibly important to helping your fellow man,
is that also a part of it for you?
Speaker 3 (05:00):
And I mean put it this way, if it meant
that I had to die to save everybody else with dishant,
I would I want to see everybody win with this,
and I want the future generations. I never even know
this this disease existed.
Speaker 1 (05:13):
So uh, Elijah, Stacy is my guest, and I put
a link to both some information about Elijah and his
story that is really really good.
Speaker 2 (05:24):
I watched it this morning.
Speaker 1 (05:25):
I read the website, and then I put a link
to Right to Try and the Right to Try Act
just so people can read more about this. This is
one of those things, Elijah. I mean, do you ever
meet people that say, no, this is a bad idea.
Speaker 3 (05:37):
You know, it's very hard to find someone that doesn't agree.
It's very bipartisan, but there, you know, there are some,
but they're very, very very hard to find.
Speaker 2 (05:47):
Well.
Speaker 1 (05:47):
I wish you the absolute best, Elijah, and success in
this because even you know, if things don't go the
way they want for you, you are going to help
someone else in the future, and that helps everybody. I
appreciate you making time for me today.
Speaker 3 (05:59):
Thank you so much for how with me. I appreciate it.
Speaker 2 (06:00):
Thanks Elijah,
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