World Lymphoma Day Belongs to the Rare Ones Too – Ep. 38 – The Fine, But Not Fine Podcast

Rare lymphomas are hard to build an awareness campaign around — and a global awareness day does matter. Why one day of visibility does what three thousand patients a year can't do alone.

1. World Lymphoma Day Belongs to the Rare Ones Too – Ep. 38 16:37
2. Did I Really Have to Say That? Disclosing a Cancer Diagnosis at Work – Ep. 37 20:03
3. Why Mycosis Fungoides Takes Years to Diagnose: What I've Learned – Ep. 36 31:23
4. The Mycosis Fungoides Rule Out – Ep. 35 19:32
5. Treatment Fatigue: Doing the Hard Thing Forever With No Finish Line – Ep. 34 08:30
6. High Liver Enzymes on Interferon: Why I Had to Stop Treatment – Ep. 33 13:25
7. 150 Appointments: What Rare Disease Treatment Actually Costs – Ep. 32 10:01
8. Two Days in the Halls of Power – Ep. 31 20:41
9. Inside Rare Disease Week: Taking Advocacy to Capitol Hill (Part 2), Ep. 30 08:06
10. Inside Rare Disease Week: A Patient Advocate on Capitol Hill (Part 1), Ep. 29 09:26

Transcript – Episode 11

You look fine, but you’re not fine, and that’s exactly what we’re here to talk about. Welcome to Fine, But Not Fine, the podcast about navigating rare disease healthcare battles and the messy reality of chronic illness. I’m Kelly Paul, and I’ve been living with Mycosis Fungoides since 2015. This is a space for real talk, real experiences and practical advice, because surviving is one thing, but figuring out how to actually live, that’s the hard part.

The Financial Reality of Chronic Illness

Welcome back, everyone. Today. I want to talk all about the financial side of managing a chronic disease, because it is so much more than simple and small co pays. So I’m going to kick this off with some real numbers that I am experiencing right now.

So right now my annual out of pocket expenses, not counting the hundreds I pay monthly for health insurance, hover right 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 regular visits to the specialist. So those are on the calendar, not additional ones.

Additional Medical Expenses Beyond Mycosis Fungoides Treatment

I may need to have blood work, which is monthly for me, and the supplies for injections, because I’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’s just for currently treating Mycosis Fungoides, that’s that rare lymphoma that I have.
It doesn’t include all the other medical expenses one might have in life, such as dental visits twice a year, or vision care, hearing aid costs. Because I wear hearing aids, have for years, regular doctor visits, just, you know, going to see the doctor for an annual exam or a mammogram or something. And all the things, like over the counter, medications, topical treatments and so on.

And none of this is covered by some magic chronic illness fund. It’s got to come out of my pocket. It’s got to come out of my budget. And one of the really hard parts here is planning for these expenses.
Now, my workplace, like very many in the US, offers a medical flexible spending account, and it is great. At the end of each year, I can select how much money I put aside in this account. It goes into that account pre-tax, so I’m not paying taxes on it, and then I can withdraw that money for qualified medical expenses.

Navigating Flexible Spending Accounts (FSAs)

But the challenge, besides it being great, is if I get a new prescription in, say, May, and it’s expensive. Too bad I can’t go in and increase my contributions, because they’re locked in from those year-end choices. It’s the way the government has set this fund up that there has to be risk for all parties in order to not have to pay the taxes on that income.

And when you have a disease that’s constantly evolving, that’s almost like budgeting with a blindfold on. And yes, the savings for me is the tax. But when you’re talking about 1,000s of dollars, those taxes can add up, and they are well used on my treatment instead of going for taxes.

Managing Unknown Expenses

So how do I manage all this unknown budgeting potential, right?

First is I keep money saved in case of a big medical hit, a big medical expense. So I have a regular savings account like you would have, but then I have a medical one. I’m always prepared.

I also understand that the way health insurance works, a lot of that money is kind of front loaded, right? You’re having to meet deductibles, you’re having to meet minimums.

So most of that money goes out in the beginning of the calendar year. It doesn’t go out at the end of the calendar year. That doesn’t mean it never happens that way, because things may shift or medication may change, but that’s something to kind of keep in mind, and it’s important, because even one surprise, you know whether something isn’t covered, you have a blood work that falls under a different type of blood work. You have to pay the three or $400 for that blood work, instead of it being something insurance pays for something jumps in price.

Will Tarriffs Impact My Medical Expenses?

Right now, you know, one of my concerns is, how will you know, tariffs impact my medications. They do not come from the US. There’s only one place in the world that manufactures what I’m taking, and it’s not here, you know. So those are all things that I have to keep in mind. And anyone who is living with a chronic illness or a very serious disease really needs to be prepared for because it can really impact your monthly budget.

There is Financial Help Available – With Caveats

I do want to mention there is financial help out there if you know where to look and your household income qualifies. Okay.

Some medication manufacturers offer grants or patient assistance programs to help offset the cost of expensive treatments. And I have, I don’t remember which one it was. It was many years ago I had a one year grant for a particular medication that was very expensive.

Now these are usually targeted toward people who are underinsured or really facing what they would call a high out of pocket burden. We’ll translate that into plain speak, as an expensive medication, right?
And there are different ways you can kind of tap into those funds. One is to start with a manufacturer’s website who’s making your drug. A lot a lot of specialty drugs, have a patient portal or a financial support page where you can check eligibility and apply right there. Online.

You can ask your doctor or ask your pharmacist. They often know which programs exist and can help you apply, or at least if they can’t help you apply, they can point you in the right direction.

So you can use a patient advocacy group for rare or chronic illness. Nonprofits often have direct connections to these programs, or can even help with paperwork, if that’s something that’s challenging for you, and sometimes they can even walk the application through on your behalf,

And you should really check with your hospital’s Financial Office, or they might have a foundation. So larger healthcare systems sometimes have navigators who can help coordinate applications or provide documentation for income-based support.

I know my local hospital has a Patient Assistance Fund, and they help a lot of people by paying for expenses. It can feel a little overwhelming, more paperwork, more phone calls. But if you’re looking at a $500 a month prescription, getting part or all of that covered can really be life changing.

Now, like everything, there are some caveats to getting assistance. First, like I mentioned, I had a one year grant, these generally are not forever. Most are limited or you have to reapply annually. And here’s the really big one, they often don’t help people on government plans like Medicare. And this is incredibly frustrating, and it can be even worse.

Sometimes health insurers use accumulator adjustment programs. These actually exclude patient assistance from counting toward a patient’s deductible and out-of-pocket maximum, and this forces patients to pay more and more out of pocket before their insurance coverage begins.

Tips for Nonprofits That Want To Help

So here’s my tip for any local nonprofit organizations out there who may be listening and want to offset the cost of medications. Try offsetting utilities or grocery expenses because of an increase in medication expenses, be like a big business, problem solve the situation, that way your people that you’re trying to help, you’re not paying for medications, and the patient gets benefit while meeting the rules of the limited insurance requirements.

The Expense of Time When Managing a Chronic Illness

Then there’s everything, beyond the out-of-pocket expense. It’s the time off work expense.
For context, I have a minimum of 12 doctor appointments a year. That’s the bare minimum. This includes my regular annual checkup, a mammogram, appointment with my audiologist, I have an annual skin check, I have eye exam, and I have specialist visits, and my specialist, I’m incredibly fortunate she’s what I’d call localish, but it’s an hour away from where I live in the opposite direction of my job, which is already a 40 minute commute.

So let’s do that math, one hour drive to the specialist, 15 minutes in the parking deck. I have the appointment time after I spend the time walking in. I likely have to go to the lab for blood work. I have 15 minutes getting out of the parking deck and an hour back home. That is half my day gone every single time.

And I am lucky. I have flexibility. But imagine someone in a job where they get just two weeks of time off each year. How do you juggle doctor’s appointments, sick days, family emergencies and maybe, just maybe, a vacation.

So Much of What We Manage is Invisible to Others

This system is not set up for people with long term medical needs. What blows my mind is how normal this is for so many of us, and how invisible it is to everybody else.

People think, oh, you’re stable. Now that’s great, and it is, but stability still costs money. Stability still costs time. Chronic Illness is like a subscription service you didn’t sign up for with a fluctuating monthly bill and zero cancelation policy.

Now, I want to share all of this today, because people need to know what they’re facing. And many of these costs are not one and done. They go on for years.

So if you’re navigating chronic illness and the money stress that can come with it, you are not 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 with someone who needs to understand what you’re going through, or just someone who thinks your prescriptions are free because quote insurance covers it. I see you. I’m with you, and I’ll catch you next time on Fine, But Not Fine.

Thanks for listening to Fine, But Not Fine. If this episode resonated with you, subscribe so you don’t miss what’s next. And if you got a story question or just need to vent. Reach out. I’d love to hear from you until next time, take care and keep on going.