The Hidden Cost of Chronic Illness - Ep. 11

Living with a rare disease isn’t just a medical battle — it’s a financial one too. In this episode, I open up about the hidden costs of managing Mycosis Fungoides, a rare form of cutaneous T-cell lymphoma. I share how, even with insurance, I pay more than $3,500 a year out-of-pocket for prescriptions and specialist visits — not counting additional expenses like dental care, vision needs, and over-the-counter medications.

I also cover the challenges of budgeting with a flexible spending account (FSA), the stress of surprise medical bills, and the critical role of pharmaceutical financial assistance programs. I shed light on the often invisible financial and emotional toll chronic illness takes, offering real talk on why planning ahead matters — and why no one should have to navigate it alone. If you or someone you love is juggling rare disease costs, this candid conversation is for you.

Episode Transcript

(00:01):
You look fine, but you're notfine, and that's exactly what
we're here to talk about.Welcome to Fine, But Not Fine,
the podcast about navigatingrare disease healthcare battles
and the messy reality of chronicillness. I'm Kelly Paul, and
I've been living with MycosisFungoides since 2015. This is a

(00:22):
space for real talk, realexperiences and practical
advice, because surviving is onething, but figuring out how to
actually live, that's the hardpart.
Welcome back, everyone. Today. Iwant to talk all about the

(00:43):
financial side of managing achronic disease, because it is
so much more than simple andsmall co pays. So I'm going to
kick this off with some realnumbers that I am experiencing
right now.
So right now my annual out ofpocket expenses, not counting
the hundreds I pay monthly forhealth insurance, hover right

(01:06):
around $3,500. It may be $511 or$513 I don't remember, but
that's just over $290 a month.And what that covers is my
current prescription, my regularvisits to the specialist. So
those are on the calendar, notadditional ones.
I may need to have blood work,which is monthly for me, and the

(01:28):
supplies for injections, becauseI'm taking a weekly injectable.
But that's not the full picture.Okay, that number, that $3,500 a
year, that $290 a month, that'sjust for currently treating
Mycosis Fungoides, that's thatrare lymphoma that I have.
It doesn't include all the othermedical expenses one might have

(01:51):
in life, such as dental visitstwice a year, or vision care,
hearing aid costs. Because Iwear hearing aids, have for
years, regular doctor visits,just, you know, going to see the
doctor for an annual exam or amammogram or something. And all
the things, like over thecounter, medications, topical
treatments and so on.
And none of this is covered bysome magic chronic illness fund.

(02:16):
It's got to come out of mypocket. It's got to come out of
my budget. And one of the reallyhard parts here is planning for
these expenses.
Now, my workplace, like verymany in the US, offers a medical
flexible spending account, andit is great. At the end of each
year, I can select how muchmoney I put aside in this

(02:37):
account. It goes into thataccount pre tax, so I'm not
paying taxes on it, and then Ican withdraw that money for
qualified medical expenses.
But the challenge, besides itbeing great, is if I get a new
prescription in, say, May andit's expensive. Too bad I can't
go in and increase mycontributions, because they're

(02:57):
locked in from those year-endchoices. It's the way the
government has set this fund upthat there has to be risk for
all parties in order to not haveto pay the taxes on that income.
And when you have a diseasethat's constantly evolving,
that's almost like budgetingwith a blindfold on. And yes,

(03:19):
the savings for me is the tax.But when you're talking about
1,000s of dollars, those taxescan add up, and they are well
used on my treatment instead ofgoing for taxes.
So how do I manage all thisunknown budgeting potential,
right?
First is I keep money saved incase of a big medical hit, a big

(03:40):
medical expense. So I have aregular savings account like you
would have, but then I have amedical one. I'm always
prepared.
I also understand that the wayhealth insurance works, a lot of
that money is kind of frontloaded, right? You're having to
meet deductibles, you're havingto meet minimums.
So most of that money goes outin the beginning of the calendar
year. It doesn't go out at theend of the calendar year. That

(04:03):
doesn't mean it never happensthat way, because things may
shift or medication may change,but that's something to kind of
keep in mind, and it'simportant, because even one
surprise, you know whethersomething isn't covered, you
have a blood work that fallsunder a different type of blood
work. You have to pay the threeor $400 for that blood work,
instead of it being somethinginsurance pays for something
jumps in price.

(04:23):
Right now, you know, one of myconcerns is, how will you know,
tariffs impact my medications.They do not come from the US.
There's only one place in theworld that manufactures what I'm
taking, and it's not here, youknow. So those are all things
that I have to keep in mind. Andanyone who is living with a
chronic illness or a veryserious disease really needs to

(04:44):
be prepared for because it canreally impact your monthly
budget.
I do want to mention there isfinancial help out there if you
know where to look and yourhousehold income qualifies.
Okay.
Some medication manufacturersoffer grants or patient
assistance programs to helpoffset the cost of expensive
treatments. And I have, I don'tremember which one it was. It

(05:06):
was many years ago I had a oneyear grant for a particular
medication that was veryexpensive.
Now these are usually targetedtoward people who are
underinsured or really facingwhat they would call a high out
of pocket burden. We'lltranslate that into plain speak,
as an expensive medication,right?
And there are different ways youcan kind of tap into those

(05:27):
funds. One is to start with amanufacturer's website who's
making your drug. A lot a lot ofspecialty drugs, have a patient
portal or a financial supportpage where you can check
eligibility and apply rightthere. Online.
You can ask your doctor or askyour pharmacist. They often know
which programs exist and canhelp you apply, or at least if

(05:51):
they can't help you apply, theycan point you in the right
direction.
So you can use a patientadvocacy group for rare or
chronic illness. Nonprofitsoften have direct connections to
these programs, or can even helpwith paperwork, if that's
something that's challenging foryou, and sometimes they can even
walk the application through onyour behalf,

(06:12):
And you should really check withyour hospital's Financial
Office, or they might have afoundation. So larger healthcare
systems sometimes havenavigators who can help
coordinate applications orprovide documentation for income
based support.
I know my local hospital has aPatient Assistance Fund, and

(06:32):
they help a lot of people bypaying for expenses. It can feel
a little overwhelming, morepaperwork, more phone calls. But
if you're looking at a $500 amonth prescription, getting part
or all of that covered canreally be life changing.
Now, like everything, there aresome caveats to getting
assistance. First, like Imentioned, I had a one year

(06:54):
grant, these generally are notforever. Most are limited or you
have to reapply annually. Andhere's the really big one, they
often don't help people ongovernment plans like Medicare.
And this is incrediblyfrustrating, and it can be even
worse.
Sometimes health insurers useaccumulator adjustment programs.

(07:18):
These actually exclude patientassistance from counting toward
a patient's deductible and outof pocket maximum, and this
forces patients to pay more andmore out of pocket before their
insurance coverage begins.
So here's my tip for any localnonprofit organizations out
there who may be listening andwant to offset the cost of

(07:41):
medications. Try offsettingutilities or grocery expenses
because of an increase inmedication expenses, be like a
big business, problem solve thesituation, that way your people
that you're trying to help,you're not paying for
medications, and the patientgets benefit while meeting the

(08:01):
rules of the limited insurancerequirements.
Then there's everything, beyondthe out of pocket expense. It's
the time off work expense.
For context, I have a minimum of12 doctor appointments a year.
That's the bare minimum. Thisincludes my regular annual

(08:23):
checkup, a mammogram,appointment with my audiologist,
I have an annual skin check, Ihave eye exam, and I have
specialist visits, and myspecialist, I'm incredibly
fortunate she's what I'd calllocalish, but it's an hour away
from where I live in theopposite direction of my job,
which is already a 40 minutecommute.

(08:45):
So let's do that math, one hourdrive to the specialist, 15
minutes in the parking deck. Ihave the appointment time after
I spend the time walking in. Ilikely have to go to the lab for
blood work. I have 15 minutesgetting out of the parking deck
and an hour back home. That ishalf my day gone every single

(09:07):
time.
And I am lucky. I haveflexibility. But imagine someone
in a job where they get just twoweeks of time off each year. How
do you juggle doctor'sappointments, sick days, family
emergencies and maybe, justmaybe, a vacation.
This system is not set up forpeople with long term medical

(09:29):
needs. What blows my mind is hownormal this is for so many of
us, and how invisible it is toeverybody else.
People think, oh, you're stable.Now that's great, and it is, but
stability still costs money.Stability still costs time.

(09:50):
Chronic Illness is like asubscription service you didn't
sign up for with a fluctuatingmonthly bill and zero
cancelation policy.
Now, I want to share all of thistoday, because people need to
know what they're facing. Andmany of these costs are not one
and done. They go on for years.

(10:12):
So if you're navigating chronicillness and the money stress
that can come with it, you arenot alone. You are not bad at
budgeting, you are not failing.This system is just really
freaking hard to survive in now.
Thanks for listening. As always,feel free to share this episode

(10:33):
with someone who needs tounderstand what you're going
through, or just someone whothinks your prescriptions are
free because quote insurancecovers it. I see you. I'm with
you, and I'll catch you nexttime on Fine But Not Fine.
Thanks for listening to Fine ButNot Fine. If this episode

(10:54):
resonated with you, subscribe soyou don't miss what's next. And
if you got a story question orjust need to vent. Reach out.
I'd love to hear from you untilnext time, take care and keep on
going.