Financial Planning Considerations for Living with Rheumatoid Arthritis

Having a chronic condition is expensive. At age 2 when I was diagnosed with juvenile rheumatoid arthritis, I had no idea what I was in for with either the disease or my entire life (after all, I was 2).

But only later did it dawn on me that my illness has a huge financial impact.

The financial impacts of RA

Wouldn’t it be great if - when a person is diagnosed with rheumatoid arthritis (RA) - their rheumatologist brings in a financial planner to walk us through all the impacts?

For example: paying a lot of money for treatments (that may or may not work) over the course of a lifetime, surgeries (like joint replacements), other treatments (like physical therapy, or complementary medicine treatments like massage and acupuncture that are not often covered by health insurance, but provide pain relief and other benefits), and adaptations to help with the physical impacts of the disease (like remodeling to make a home more accessible or purchasing devices to help with opening jars, putting on socks, grabbing things from the floor, and so forth).

Then, the financial advisor could talk about the limits that people with RA may have in working, such as pain, fatigue, and physical disability. So not only do a lot of people living with RA have extra expenses, they may make less money or have a shorter time span they are able to work.

A financial planner would be helpful

It sure would be helpful to have this knowledge about the potential financial impacts of RA from the start, but unfortunately, the financial advisor is still sitting in their office because the rheumatologist never called them.

Actually, the financial advisor likely doesn’t have a clue about the financial impacts of RA because they never studied chronic illness from that perspective. (Hint! Setting up a practice with these insights could be a lucrative business! If you do it, remember I helped with the idea!)

How to make finances work with RA

In any case, since they don’t exist yet, you’ve got me and I’ll share what I’ve learned from 40-plus years of living with RA and trying to figure out how to make the finances work.

Purchase the best health insurance you can afford

If you are working and have options for health insurance, it may cost more in monthly premiums yet be better for overall medical spending to purchase the best plan you can afford.

Every year, my husband and I reassess our health insurance options to make sure we are getting the best plan we can afford. To be honest, less expensive plans are available, but we find the total costs to be more expensive. We may be paying higher premiums, but when I was suddenly and unexpectedly hospitalized a couple of years ago, we could afford those bills because the insurance covered the majority of the stay. The same goes for medication coverage and my many (many, many) specialist doctors I see throughout the year.

We do some calculations based on the plans to consider:

• Cost of co-pays for doctors
• Physical therapy
• Tests
• Durable medical equipment (for my wheelchair maintenance and purchase every 5 years)
• Medications
• and hospitalizations.

We compare the expected costs plus the unhoped-for costs (hospitalizations) against the premium and deductible. When doing that, we find that more expensive premiums win out for us in other savings.

I’ve been doing this since I started working full-time at age 22 because I knew even then that I had more medical costs than the average person and need to be covered in case of a health crisis (which has been infrequent, but more often than I would like!). Having good health insurance has saved my financial butt many times, but I also have had to accept that I just need to spend more than most people on health costs to stay as well as possible.

Seek out programs that help with health expenses like medication co-pays

They are not always easy to find, but programs are available to help with health expenses. In my case, I have found medication co-pay assistance programs to be hugely important. Without these programs, I wouldn’t be able to afford my biologic medication (which has been significant in managing my RA during the last 10 years).

I’ve been on 4 biologic medications and each company has had a co-pay assistance program. After filling out some online forms and submitting my health insurance information, they have covered some or all of the cost of my co-pays that would otherwise be more than 10,000 dollars per year.

I’m lucky I found a medication that finally works for me, but I may be even more thankful that I can take it because it becomes affordable to me with this co-pay assistance. (Check out this article by Lisa Emrich about finding help affording medications.)

If you are able to work, do so for as long as possible

RA is a very hard disease to live with. It can be extremely painful, wipe out our energy with constant fatigue, and cause permanent physical disabilities. In my case, it challenges me with all 3.

I’m lucky that I found a career that I can do successfully with my disabilities and while using a wheelchair, and that I have a supportive employer who sees the value I bring to the work. I find my work both personally rewarding and also financially necessary. And I hope to work for many more years, contributing both to my community and also to my savings.

It can be hard to find a job that will fit a life with RA and an employer who is accepting of our limits. However, if you find it, hang on to it as long as you can.

In my case, since I had RA from a young age, I had the good fortune (?!) of considering my talents and abilities to choose a career that would also accommodate my disabilities. It’s not always easy, but I’ve been glad to have more financial stability from being able to work this long.

Save and then save some more

It’s been personal experience that just when I think I’m doing well, something happens. Like needing emergency knee replacement surgery and treatment of an infected knee (out of work for months), skin infection from undiagnosed/untreated psoriasis (out of work a week), and so forth.

RA just throws curveballs. That’s just what it does. So every opportunity I have, I am saving money. Sure, it’s nice when I can use it on a vacation. But it’s crucial for having in case of that unexpected hospital bill.

Additionally, I expect someday (likely sooner than the typical age of 65) that I will have to stop working due to my illness. So, I’m saving for a retirement day that I anticipate will come sooner than most people, and possibly rather suddenly. Even better, save in as many ways as possible. For example, if you qualify for an ABLE account that has some tax benefits or setting up retirement savings accounts can both help.

Calculate and keep updating

At least twice a year, I check my finances and savings calculations. I do this to keep my planning as current as possible and to check that I’m saving as much as I can, cutting expenses where I can, and planning for the unexpected financial twists that can come from living with RA.

Honestly, I’ve lost count of how many times a health bill or charge for my wheelchair has come in much higher than expected, and I am grateful that I just know these things will happen and plan for them. It doesn’t mean that I don’t check things are right, argue, or negotiate — but, I also just save because I know these things will inevitably happen.

Checking how I’m doing with saving (and minimizing spending) also helps me to plan for that retirement day to make sure I’m on the best track possible for when it arrives.

Advanced financial planning is helpful

While RA, unfortunately, comes with plenty of financial costs (in addition to health ones), there are some things we can help manage with advance planning.

The big lesson I’ve experienced is that the most painful expenses will be the unplanned, but necessary ones. When I’ve had emergency health issues, I needed them addressed in the hospital. Waiting would have only cost me more money (or my life, frankly), so the cost was worth it but still not fun to have to pay.

Only with diligent saving and planning have I’ve been able to manage these situations. If RA has taught me anything, it’s to plan for the unexpected and save up for those inevitable rainy days.