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 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.
Elijah, welcome to the show.
First of all, thank you so much for having me talk.
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.
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 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.
So what, you're twenty three years old, you've had this diagnosed for sixteen or seventeen years?
Am I correct on that?
That's right?
Yes, So what is your prognosis from here on out? Elijah?
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.
Well, talk to me about right to try and why you've become such an advocate.
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 the option to at least try something rather than just nothing at all and die.
So what what are you looking to try? Are you aware of treatments?
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.
To help you? Oh?
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
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.
Didn't the federal government pass right to try? Or am I? Am I misremembering this?
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.
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. What kind of action are you looking for here in Colorado?
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, and that they can get access to treatments to hopefully save their life.
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 obviously is significant and incredibly important to helping your fellow man, is that also a part of it for you?
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.
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.
I watched it this morning.
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.
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.
Well.
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.
Thank you so much for how with me. I appreciate it.
Thanks Elijah,