Kid with Declining Health Because Insurance
Kid with Declining Health Because Insurance
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 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...