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– [Chris] Mason, it's so
nice to meet you today. I'm sorry you haven't been feeling well since insurance denied your meds. Mason, do you just wanna feel better? I want people watching
this to really understand what's happening with insurance and Mason. Can you describe it from your perspective? – Can I describe it? Yeah, it's terrible. – Don't curse. – I will not curse. I'll try not to. – [Chris] I can do the
little beeps if you do. – That's fine, that's fine. That might work. – Get 'em ready. – So Mason has a lot of
complications from his transplant. He has graft versus host disease, which plays a role in all of his organs. So he has high blood
pressure as a result of that. So he's been on the same blood pressure regimen for eight years. Okay, doing great, blood
pressure's been great. We wouldn't actually normally check them 'cause they were so good.

We just check them when
we went to the doctor. – And he was doing well. – He was doing really well. We'd actually gone about nine months with no doctor appointments, so. – Which was the first time ever for him. – Yeah. And then in January, they decided they were no longer going to cover one of his blood pressure medications. So I immediately start working with our doctors in Cincinnati, which were the prescribing doctors and everything kept getting denied. We sent appeals, prior authorizations, all the things that
you're supposed to send. They still kept saying no but they didn't have an alternative therapy. – This past setback his kind
of hit the reset button. So now he pretty much stays
on the couch and plays here. – He went about two weeks
without his medication before we saw any big issues. And they thought maybe since
he'd been on it so long that he might do okay just off of it, which is why we were monitoring.

And then one day, he
took a turn for the worse and we had to go to the
local emergency room. – That's when he was
sleeping all day long. He would be talking and just fall asleep. So we knew something was wrong. – [Chris] So his energy
decreased right after insurance stopped covering a medicine? – Yeah, it was harder for him to breathe, harder for him to get around,
so he just stopped doing it. Couldn't stay awake. He would be talking to you
and then just fall asleep. That's those CO2 levels being off. – [Chris] What is it like to
witness that as the father? – Very frustrating. It's tough. You try to stay positive, try
to stay busy, try to make sure that he has stuff that he
needs to keep him distracted. – Who's your favorite Ninja Turtle? – Raph. – Raph. – Mikey. – And Mikey. Who'd you dress up like for Halloween? – Raph. – Raph. – That's probably one of the
biggest problems right now is his lungs because you
do like to get up and play.

You just don't have the energy anymore. Is that right? He was asking to be
carried everywhere, yeah. Yeah, and not a lot of energy
to do very many things. I used to chase him around
the house and that's no. – [Chris] Mason, have you been extra tired the past few months? What's it like to be extra tired? Do you like it or dislike it? – Thumbs down or up? Down. – [Chris] Do you want your energy back? And I think the most
maddening thing is that Mason's just an 11-year-old
who wants to play with his toys and have a good time. And he's struggling to
get the meds he needs that will allow him to do
that when you know they work.

– Yeah.
– Yes. Like we said, he didn't go to
appointments for nine months. He was doing great and then
denied this one medication, and now they just came back from staying in Cincinnati for pretty much a month. – Yeah. – [Chris] At the Ronald McDonald house? – Yeah. – We had to get his BiPAP all set up because his CO2 levels were down and something needed to change, so… – Well, and he had to restart steroids which he'd been off for a lot
of years and it caused him. Now he's diabetic and has
glaucoma from the steroids. – Steroid-induced diabetes. – [Chris] And all of these
things, they happened after? – They happened after the
blood pressure medication. – If you have a healthy
family, you don't really think about healthcare that much. 'Cause I know I came from a family that we were hardly ever in the hospital except for maybe physicals
for sports or something. I didn't think about healthcare until I had a kid that has medical problems.

Now two, both kids have medical problems. So I'm sure that just
the general community doesn't know how important
it is to kids like Mason. – [Chris] What is the most important thing for the world to understand
about your family? – That we're just like everybody
else with extra equipment. – [Chris] If you had one wish,
you could wish for anything in the whole entire world,
what would you wish for? – A unicorn. – [Chris] A unicorn. What would you do with a unicorn? – Ride it. – [Chris] What about you, Mason? If you had one wish,
anything in the world, what would you wish for? – Pizza. – [Chris] Say that one more time, Mason. – Pizza. – [Chris] Pizza? What is Mason's diagnosis? – Ligase IV deficiency. – [Chris] What is that? – It is a primordial dwarfism
with an immune deficiency that requires a bone marrow transplant.

– [Chris] How prevalent is it? – There are 30 known cases. – [Chris] Are there any other sets of siblings with this diagnosis? – None that we know of, no. – We had a genetic specialist that thought he knew what was going on. We knew we wanted to have another kid, so he said one in a million chance that something like this will happen. Well, when he got the proper diagnosis, it turned out to be one in four. – [Chris] Does it impact
Mason and Lizzy differently? – Yes. – [Chris] How so? – Lizzy was very sick before she had her bone marrow transplant and Mason has a lot of complications
from the transplant, so. – [Chris] When did they have
the bone marrow transplant? – Mason's was 10 years
ago and Lizzy's was 11.

– [Chris] How old are Mason and Lizzy? – Mason is 11 and Lizzy is 13. – [Chris] What's it like
to be the younger brother? – Oh, what's it like to
be the younger brother? Do you like being the younger brother? No? Do you think you're in charge? – [Chris] Does your sister
ever boss you around? What do you want others to know about that whole situation of
insurance taking away the medicine he needs to thrive? – Well, there's not much you can do if an insurance company
wants to deny something. You can do everything
you can in your power to try to voice your displeasure. But at the end of the day, you're talking to companies that have their own agendas. – [Chris] How much are you paying a month? – We get our insurance
bill sent to the house. I have to take it to work. They pay it, they pay
it, but it's over $1,500 for just the insurance plan.

And then of course, co-pays and whatever the insurance doesn't cover and all that. Who knows how much, I think
we've totaled that up before. – It's ridiculous amounts of money. – Ridiculous. Yeah. – [Chris] I'm sorry that I'm asking. This is probably triggering, right? – Yeah. It's a lot of money. – It's better to talk about it though. – [Chris] Why is it good to talk about? – Because I'm sure
there's plenty of people out there that have the same frustrations, and it's always better to
know that you're not alone in a fight and it's not
anything personal between an insurance company and your family.

It's just, that's how it is. – [Chris] What are you
most proud of Mason for? – The fact that he's still just as silly as ever besides what he's gone through. He's the toughest guy I know, I'd say. What do you think about that? You think you're tough? Yeah. – [Chris] How do you wear both hats, navigating the system and being
a parent, a loving parent? – It's really hard because
I am very frustrated with all of these other things and I don't wanna take
any of that out on Mason.

– We sort of get
frustrated with each other. – Yeah. – 'Cause there's just nowhere else to send that energy out to
and when you're constantly getting bombarded with
it, yeah, it's tough. – [Chris] If you could send a message to the people making the decisions at the insurance company,
what would you say? – I know it's a business,
but know when to say, "Let's listen to the doctors on this one," because they're the ones that know best.

I truly believe the
doctors aren't going to just prescribe something to a kid that has severe medical issues
if it wasn't necessary. Just know that when you deny one thing, there's plenty of other things that are right behind
it waiting to happen. It's almost like there's a
domino set inside his body. When one falls, then the
next falls, and the next, so. – [Chris] Is that what's happened? – That's kind of, yeah. His kidneys were acting up and his lungs and his eyes have gotten worse.

Is that all tied to one medication? I don't know. – [Chris] But it all happened after? – But it all happened right after that medication was denied, yeah. It's kind of hard to believe, but….

Motivateyourhealth

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