Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Not just as a libertarian, but just as somebody who
wants people to be able to live longer and live better.
I've always been in favor of right to try legislation.
In fact, as a libertarian, I've always found it more
than a little bit annoying that people have to ask
permission to take medications. And there is a federal right
to try law that President Trump trumpeted if you will
(00:23):
pardon the punt, during his first term. States also have
a particular right to try laws, and Colorado recently expanded
its own right.
Speaker 2 (00:32):
To try law.
Speaker 1 (00:33):
And before getting any further into that discussion, I want
to bring my guests on to the show. Elijah Stacey
wrote a remarkable opinion piece for Fox News a couple
months back, and there's also a YouTube video that he
did that you can find on my blog right now
at Rosskominski dot com. And the title of the Fox
(00:54):
News op ed is, I'm dying of a fatal disease.
Bureaucrats should wouldn't decide how doctors can try to save me? Now,
I mean, I'll say hell Alujah to that, but my
opinion doesn't matter that much because I'm not struggling with
this Elijah Stacey is Elijah, Welcome to KOA.
Speaker 2 (01:13):
Thank you so much for spending some time with us.
Speaker 3 (01:16):
Thank you so much for having me. And I got
to say your sege was great, so well done with that.
Speaker 1 (01:20):
All right, thank you just set this up for us
in terms of your own personal situation and then why
right to try is such an important thing for you.
Speaker 3 (01:32):
Yeah. So I'm born with the fatal muscleways disease called
the shin muscle medistrophy and give you a quick runnoant
of that. Basically what happens is start to lose muscle
as time goes on and just to lack a protein
that adds structural support to muscle fibers called distripine. And
so what that looks like is you have children walking
on their toes, falling frequently, and then eventually going into
(01:54):
the wheelchair. I went into a wheelchair by age or eleven,
which is common. They'll lose upperland funk. So I've been
to raise their arms. I'll be able to feed themselves,
stretch their you know, things like that. And the worst
part is that the diseases nay with an average lifespan
of twenty five because the diaphragm and intercostal muscles are
(02:14):
responsible for breathing the day, weekend, as well as the
heart being a muscle itself. So the reason that's is
so important is because when you have a fatal disease
and you don't have a lot of options and there's
so much variability with with decisions based on everybody's unique
commutation and things like that, you know, you want to
you want the ability to try, especially in the land
(02:34):
of the free right. I mean, like you kind of said,
it's kind of crazy that we we have to even
ask to take a drug that you know, our position
would be signed off on, right, and so we shouldn't
really need the government to to approve that if you know,
the people closest to us, our doctors.
Speaker 2 (02:51):
Are there. So I hope you don't mind my asking.
Speaker 1 (02:54):
So you said you went into a wheelchair at age eleven.
You're you're twenty three right now?
Speaker 2 (03:00):
Is that right? Twenty three, twenty four somewhere in there.
Speaker 3 (03:03):
Yep, No, that's right, twenty three and yep, that's true.
Speaker 2 (03:05):
And so right now, do you have use of your arms?
Speaker 3 (03:10):
Not really? Not really?
Speaker 2 (03:13):
Wow, So again, sorry for these personal questions.
Speaker 3 (03:18):
Open book. The book ask me go for it?
Speaker 2 (03:22):
How do you.
Speaker 1 (03:24):
How do you process knowing the path that you're on
is essentially certain unless you get some kind of miracle
cure that we don't know of to exist right now?
Speaker 2 (03:39):
How do you think about that?
Speaker 1 (03:41):
Or do you spend all your time focusing on maybe
we'll find something?
Speaker 2 (03:45):
How do you get through each day?
Speaker 3 (03:48):
Yeah? No, that's an excellent question. I mean, you know,
everybody really has a duty and if you will, mine's
just more defined. That's all I looked at it. But
you know, I work in the biopex build so on
cong involved with research and the latest aignanged things, and
there's so many great things coming down the pipeline that
I have a lot of confidence in.
Speaker 1 (04:08):
Uh.
Speaker 3 (04:08):
You know, I also believe in God, so I believe,
you know, my time, when my time's up here, I'll
be with God. So that's very comforting to know. And
I believe it's God's plan for me to have this
disease and the committed me to have it to do
something about it. So you know, that's that's why I'm
on the phone with you today, right to have it
came because I can use my disease to help people
with their disease or whatever they're going through and trying
(04:30):
to help and overcome their suffering. So you know, I
don't think about it much. I honestly have full confidence
we're going to get this disease and patients are not
going to die from me any think we're really close
to that.
Speaker 1 (04:44):
I don't know how much you have paid attention to
what's going on to the new Colorado law, do you?
I don't even want to take your time with it
if you haven't studied it at all.
Speaker 2 (04:56):
So do you do you know about it? Or should
I just skip that part?
Speaker 3 (04:58):
Yeah? No, No, I actually estified in both the in
and Assembly for it.
Speaker 2 (05:03):
So okay, all about it? Okay.
Speaker 1 (05:05):
So, in the context of the fact that people already
understood there to be right to Try legislation, what does
the new right to Try legislation here in Colorado? And
I will note to listeners that this is bipartisan legislation.
I see Republicans and Democrats on the bill. So what
does this bill do going beyond what was already there?
Speaker 2 (05:28):
Yeah?
Speaker 3 (05:29):
So this is goes one step further, gives you even more
medical freedom to patients with a terminal illness. So this
is record for individualized treatments, and so what this does
is you don't need safety data, right, and if you
know how drug development works, safety data can take time
to develop, and patients that are dying don't have time.
(05:51):
And so you know, you could be short of just
one month with with you know, with current legislation, but
with record driver individualized treatments that you know that could
stay you that one month and then you save your life.
And I think that you know, the technology is there,
the science is there, and everybody agrees you shouldn't be
stopped because of legislation, and so this goes one step
(06:14):
further and allows patients to try.
Speaker 1 (06:18):
So as I and as I read the summary of
the bill, at least what it says is that an
an eligible patient and that's that's defined as having a
life threatening or severely debilitating illness and not having other
treatments available and having a recommendation for a doctor all
stop there.
Speaker 2 (06:37):
But there's more to it.
Speaker 1 (06:39):
An eligible patient can request from a pharmaceutical company to
be provided with an investigational drug or biologic or device
that and this is what you were talking about with
personalized So again, again, according to the bill summary, unique
and provided exclusively for you use buy an individual patient.
(07:02):
Can you just elaborate for us a little bit what
personalized really means here for somebody in this situation.
Speaker 3 (07:13):
Sure, I mean you might look at DESN would be
a great example of this. For example with dashen. Right,
there's seventy nine different excells. These are the coding reasons
that make up the dishes thing gene, and that's the
gene that's mutated. And so if you do like a
gene editing, for example, you might you're going to have
to edit the mutation differently for each person. So that
(07:34):
would be a unique development that's totally needed in a
disease like dashen, because it is unique for every person.
Does that make sense?
Speaker 1 (07:43):
Absolutely? It does for those just joining. We're talking with
Elijah Stacey. He's twenty three years old. He wrote a
piece for Fox News entitled, I'm dying of a fatal disease.
Bureaucracts shouldn't decide how doctors can try to save me.
He also did a really wonderful and powerful YouTube video
that I've posted on my blog to make it easy for.
Speaker 2 (08:05):
You to find.
Speaker 1 (08:05):
If you go to if you go to Rosscominski dot com,
So does this stuff apply to you right now? Elijah?
Are there are there investigational drugs or biologics that you
are trying right now? Yeah?
Speaker 3 (08:25):
I mean I would definitely well, I mean, I'm not
trying anything right now, but I definitely would want to
have this in place. You know, I am getting older
in terms of the average lifespan with Jashen, so you know,
as new things come up, definitely you know this will
be an avenue that I would probably likely to pursue
that could dooretically save my life. So you know this
(08:47):
certainly applies to me, and I mean my and your brother.
He also has the shin as well, so I he's
seventeen years old, so you know this is definitely very
personal to me.
Speaker 2 (08:56):
Oh my gosh, is he in a wheelchair now as well?
Speaker 3 (09:00):
That's correct?
Speaker 2 (09:01):
Yep, I can't believe it. How do your parents deal
with this?
Speaker 1 (09:07):
I mean, you sound like a very upbeat guy, and
it sounds you made clear that part of what makes
this relatively easier. I'm not gonna say that it's easy,
because it's obviously not, but relatively easier for you than
it might be for some others is your strong faith.
Speaker 2 (09:26):
Do your parents share that.
Speaker 3 (09:29):
Oh, absolutely, they have a very strong faith. I mean
just the ass of the story. To give you more color,
My younger brother Max, he was severely disabled from a
film heart surgery when you were four months old, and
he actually passed away when he was fourteen years old.
And he also had the dream as well, So you
know they've already suffered a loss of a child. So
(09:50):
you know, my parents are very very strong people, been
married for thirty plus years. They share the same faith
that I have, and you know, we just keep going
forward and using our using our suffering for something something great,
and living a life full of purpose and meaning.
Speaker 2 (10:08):
Are you what what's the normal day for you?
Speaker 1 (10:11):
Are? Are you in college? Did you go to college?
Are you doing grad school? Are you spending all your
time as an activist?
Speaker 3 (10:16):
Now?
Speaker 2 (10:16):
What's what's a day for Elijah these days?
Speaker 3 (10:20):
Yeah? So I do many different things. First of all,
when I was fifteen years old, I founded a nonprofit
called Destroy to Shin. So I do a lot of
work there. You know, we get people grants to help
them with wheelchairs or accessible cars or whatever. We also
helped on research and we're trying to destroy to Shin.
Speaker 1 (10:39):
Right.
Speaker 3 (10:40):
I'm also a patient advocate or consulting for five biotech companies.
So that's what I do mainly for work. I'm also
an investor who I absolutely love it, and I will
have to invest in biotech companies use my knowledge there.
I'm also a public speaker. I do that professionally. And
I'm also in author on my book A Small Lip,
(11:02):
which is a memoir about my whole wife and all
things that we're discussing here, and that's not being turned
into a movie, so I'm also organized a producer on
that as well. So a lot of different things. I
try to be busy, and I honestly love working.
Speaker 1 (11:19):
Fabulous a remarkable story. You're a very resilient dude, and
I hope that somebody somewhere finds something that you can try.
Speaker 3 (11:30):
Uh.
Speaker 1 (11:30):
Even separate from a question of law, you and I
agree that you shouldn't need the law to allow you
to try something, but this is where we are, at
least in Colorado, you have that law now, and there
is some of it nationwide. But I'm tremendously admiring of
your of your attitude, and of everything you're doing. You're
You're a remarkable guy, and I'm honored to get to
(11:52):
talk to you.
Speaker 3 (11:54):
No, thank you so much. I appreciate the kind of
words and giving me the time to talk about this
an unfortunate manner.
Speaker 1 (12:00):
Thanks so much, Elijah. Hopefully we'll keep in touch. Appreciate it. Awesome,
Thank you, thank you,
Not just as a libertarian, but just as somebody who
wants people to be able to live longer and live better.
I've always been in favor of right to try legislation.
In fact, as a libertarian, I've always found it more
than a little bit annoying that people have to ask
permission to take medications. And there is a federal right
to try law that President Trump trumpeted if you will
(00:23):
pardon the punt, during his first term. States also have
a particular right to try laws, and Colorado recently expanded
its own right.
Speaker 2 (00:32):
To try law.
Speaker 1 (00:33):
And before getting any further into that discussion, I want
to bring my guests on to the show. Elijah Stacey
wrote a remarkable opinion piece for Fox News a couple
months back, and there's also a YouTube video that he
did that you can find on my blog right now
at Rosskominski dot com. And the title of the Fox
(00:54):
News op ed is, I'm dying of a fatal disease.
Bureaucrats should wouldn't decide how doctors can try to save me? Now,
I mean, I'll say hell Alujah to that, but my
opinion doesn't matter that much because I'm not struggling with
this Elijah Stacey is Elijah, Welcome to KOA.
Speaker 2 (01:13):
Thank you so much for spending some time with us.
Speaker 3 (01:16):
Thank you so much for having me. And I got
to say your sege was great, so well done with that.
Speaker 1 (01:20):
All right, thank you just set this up for us
in terms of your own personal situation and then why
right to try is such an important thing for you.
Speaker 3 (01:32):
Yeah. So I'm born with the fatal muscleways disease called
the shin muscle medistrophy and give you a quick runnoant
of that. Basically what happens is start to lose muscle
as time goes on and just to lack a protein
that adds structural support to muscle fibers called distripine. And
so what that looks like is you have children walking
on their toes, falling frequently, and then eventually going into
(01:54):
the wheelchair. I went into a wheelchair by age or eleven,
which is common. They'll lose upperland funk. So I've been
to raise their arms. I'll be able to feed themselves,
stretch their you know, things like that. And the worst
part is that the diseases nay with an average lifespan
of twenty five because the diaphragm and intercostal muscles are
(02:14):
responsible for breathing the day, weekend, as well as the
heart being a muscle itself. So the reason that's is
so important is because when you have a fatal disease
and you don't have a lot of options and there's
so much variability with with decisions based on everybody's unique
commutation and things like that, you know, you want to
you want the ability to try, especially in the land
(02:34):
of the free right. I mean, like you kind of said,
it's kind of crazy that we we have to even
ask to take a drug that you know, our position
would be signed off on, right, and so we shouldn't
really need the government to to approve that if you know,
the people closest to us, our doctors.
Speaker 2 (02:51):
Are there. So I hope you don't mind my asking.
Speaker 1 (02:54):
So you said you went into a wheelchair at age eleven.
You're you're twenty three right now?
Speaker 2 (03:00):
Is that right? Twenty three, twenty four somewhere in there.
Speaker 3 (03:03):
Yep, No, that's right, twenty three and yep, that's true.
Speaker 2 (03:05):
And so right now, do you have use of your arms?
Speaker 3 (03:10):
Not really? Not really?
Speaker 2 (03:13):
Wow, So again, sorry for these personal questions.
Speaker 3 (03:18):
Open book. The book ask me go for it?
Speaker 2 (03:22):
How do you.
Speaker 1 (03:24):
How do you process knowing the path that you're on
is essentially certain unless you get some kind of miracle
cure that we don't know of to exist right now?
Speaker 2 (03:39):
How do you think about that?
Speaker 1 (03:41):
Or do you spend all your time focusing on maybe
we'll find something?
Speaker 2 (03:45):
How do you get through each day?
Speaker 3 (03:48):
Yeah? No, that's an excellent question. I mean, you know,
everybody really has a duty and if you will, mine's
just more defined. That's all I looked at it. But
you know, I work in the biopex build so on
cong involved with research and the latest aignanged things, and
there's so many great things coming down the pipeline that
I have a lot of confidence in.
Speaker 1 (04:08):
Uh.
Speaker 3 (04:08):
You know, I also believe in God, so I believe,
you know, my time, when my time's up here, I'll
be with God. So that's very comforting to know. And
I believe it's God's plan for me to have this
disease and the committed me to have it to do
something about it. So you know, that's that's why I'm
on the phone with you today, right to have it
came because I can use my disease to help people
with their disease or whatever they're going through and trying
(04:30):
to help and overcome their suffering. So you know, I
don't think about it much. I honestly have full confidence
we're going to get this disease and patients are not
going to die from me any think we're really close
to that.
Speaker 1 (04:44):
I don't know how much you have paid attention to
what's going on to the new Colorado law, do you?
I don't even want to take your time with it
if you haven't studied it at all.
Speaker 2 (04:56):
So do you do you know about it? Or should
I just skip that part?
Speaker 3 (04:58):
Yeah? No, No, I actually estified in both the in
and Assembly for it.
Speaker 2 (05:03):
So okay, all about it? Okay.
Speaker 1 (05:05):
So, in the context of the fact that people already
understood there to be right to Try legislation, what does
the new right to Try legislation here in Colorado? And
I will note to listeners that this is bipartisan legislation.
I see Republicans and Democrats on the bill. So what
does this bill do going beyond what was already there?
Speaker 2 (05:28):
Yeah?
Speaker 3 (05:29):
So this is goes one step further, gives you even more
medical freedom to patients with a terminal illness. So this
is record for individualized treatments, and so what this does
is you don't need safety data, right, and if you
know how drug development works, safety data can take time
to develop, and patients that are dying don't have time.
(05:51):
And so you know, you could be short of just
one month with with you know, with current legislation, but
with record driver individualized treatments that you know that could
stay you that one month and then you save your life.
And I think that you know, the technology is there,
the science is there, and everybody agrees you shouldn't be
stopped because of legislation, and so this goes one step
(06:14):
further and allows patients to try.
Speaker 1 (06:18):
So as I and as I read the summary of
the bill, at least what it says is that an
an eligible patient and that's that's defined as having a
life threatening or severely debilitating illness and not having other
treatments available and having a recommendation for a doctor all
stop there.
Speaker 2 (06:37):
But there's more to it.
Speaker 1 (06:39):
An eligible patient can request from a pharmaceutical company to
be provided with an investigational drug or biologic or device
that and this is what you were talking about with
personalized So again, again, according to the bill summary, unique
and provided exclusively for you use buy an individual patient.
(07:02):
Can you just elaborate for us a little bit what
personalized really means here for somebody in this situation.
Speaker 3 (07:13):
Sure, I mean you might look at DESN would be
a great example of this. For example with dashen. Right,
there's seventy nine different excells. These are the coding reasons
that make up the dishes thing gene, and that's the
gene that's mutated. And so if you do like a
gene editing, for example, you might you're going to have
to edit the mutation differently for each person. So that
(07:34):
would be a unique development that's totally needed in a
disease like dashen, because it is unique for every person.
Does that make sense?
Speaker 1 (07:43):
Absolutely? It does for those just joining. We're talking with
Elijah Stacey. He's twenty three years old. He wrote a
piece for Fox News entitled, I'm dying of a fatal disease.
Bureaucracts shouldn't decide how doctors can try to save me.
He also did a really wonderful and powerful YouTube video
that I've posted on my blog to make it easy for.
Speaker 2 (08:05):
You to find.
Speaker 1 (08:05):
If you go to if you go to Rosscominski dot com,
So does this stuff apply to you right now? Elijah?
Are there are there investigational drugs or biologics that you
are trying right now? Yeah?
Speaker 3 (08:25):
I mean I would definitely well, I mean, I'm not
trying anything right now, but I definitely would want to
have this in place. You know, I am getting older
in terms of the average lifespan with Jashen, so you know,
as new things come up, definitely you know this will
be an avenue that I would probably likely to pursue
that could dooretically save my life. So you know this
(08:47):
certainly applies to me, and I mean my and your brother.
He also has the shin as well, so I he's
seventeen years old, so you know this is definitely very
personal to me.
Speaker 2 (08:56):
Oh my gosh, is he in a wheelchair now as well?
Speaker 3 (09:00):
That's correct?
Speaker 2 (09:01):
Yep, I can't believe it. How do your parents deal
with this?
Speaker 1 (09:07):
I mean, you sound like a very upbeat guy, and
it sounds you made clear that part of what makes
this relatively easier. I'm not gonna say that it's easy,
because it's obviously not, but relatively easier for you than
it might be for some others is your strong faith.
Speaker 2 (09:26):
Do your parents share that.
Speaker 3 (09:29):
Oh, absolutely, they have a very strong faith. I mean
just the ass of the story. To give you more color,
My younger brother Max, he was severely disabled from a
film heart surgery when you were four months old, and
he actually passed away when he was fourteen years old.
And he also had the dream as well, So you
know they've already suffered a loss of a child. So
(09:50):
you know, my parents are very very strong people, been
married for thirty plus years. They share the same faith
that I have, and you know, we just keep going
forward and using our using our suffering for something something great,
and living a life full of purpose and meaning.
Speaker 2 (10:08):
Are you what what's the normal day for you?
Speaker 1 (10:11):
Are? Are you in college? Did you go to college?
Are you doing grad school? Are you spending all your
time as an activist?
Speaker 3 (10:16):
Now?
Speaker 2 (10:16):
What's what's a day for Elijah these days?
Speaker 3 (10:20):
Yeah? So I do many different things. First of all,
when I was fifteen years old, I founded a nonprofit
called Destroy to Shin. So I do a lot of
work there. You know, we get people grants to help
them with wheelchairs or accessible cars or whatever. We also
helped on research and we're trying to destroy to Shin.
Speaker 1 (10:39):
Right.
Speaker 3 (10:40):
I'm also a patient advocate or consulting for five biotech companies.
So that's what I do mainly for work. I'm also
an investor who I absolutely love it, and I will
have to invest in biotech companies use my knowledge there.
I'm also a public speaker. I do that professionally. And
I'm also in author on my book A Small Lip,
(11:02):
which is a memoir about my whole wife and all
things that we're discussing here, and that's not being turned
into a movie, so I'm also organized a producer on
that as well. So a lot of different things. I
try to be busy, and I honestly love working.
Speaker 1 (11:19):
Fabulous a remarkable story. You're a very resilient dude, and
I hope that somebody somewhere finds something that you can try.
Speaker 3 (11:30):
Uh.
Speaker 1 (11:30):
Even separate from a question of law, you and I
agree that you shouldn't need the law to allow you
to try something, but this is where we are, at
least in Colorado, you have that law now, and there
is some of it nationwide. But I'm tremendously admiring of
your of your attitude, and of everything you're doing. You're
You're a remarkable guy, and I'm honored to get to
(11:52):
talk to you.
Speaker 3 (11:54):
No, thank you so much. I appreciate the kind of
words and giving me the time to talk about this
an unfortunate manner.
Speaker 1 (12:00):
Thanks so much, Elijah. Hopefully we'll keep in touch. Appreciate it. Awesome,
Thank you, thank you,
The Ross Kaminsky Show News
Popular Podcasts
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Boysober
Have you ever wondered what life might be like if you stopped worrying about being wanted, and focused on understanding what you actually want? That was the question Hope Woodard asked herself after a string of situationships inspired her to take a break from sex and dating. She went "boysober," a personal concept that sparked a global movement among women looking to prioritize themselves over men. Now, Hope is looking to expand the ways we explore our relationship to relationships. Taking a bold, unfiltered look into modern love, romance, and self-discovery, Boysober will dive into messy stories about dating, sex, love, friendship, and breaking generational patterns—all with humor, vulnerability, and a fresh perspective.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com