Let’s face it: Living with arthritis is expensive. When diagnosed and throughout their disease journey, patients are forced to ask themselves not just, “how am I going to live with this chronic, disabling disease?” but “how am I going to pay for it?”
Not only does your health condition impact your finances, but money — or a lack of it — can also play a big role how well you can manage your health.
Arthritis costs come from two main places, says Marija Ringwelski, MPH, an expert in health care management and policy and consultant with Earnin’s Health Aid, a service that negotiates medical bills for free. “First, you have medical costs, like insurance premiums, prescription medications, and doctors’ copays,” she says. “Then you have all the indirect costs that can include everything from costs for physical therapy, special foods, supplements, and assistive devices to the cost from losing your income if you can’t work.”
Figuring Out Health Insurance
Before you can discuss any costs related to a chronic illness you first have to consider health insurance, Ringwelski says. There are a mindboggling number of plans, each with varying levels of coverage and deductibles. Once you’ve picked a plan that hopefully offers enough coverage to meet your health and financial needs, then you have to figure out where to purchase it (if you don’t get coverage from an employer). People with chronic illness should also consider supplemental or disability insurance and government programs, she says.
And signing up is just half the battle. Understanding your statement of benefits, learning to get health care from within your plan, and checking medical bills can feel like a full-time job. Oh, and don’t forget you have to start the whole decision-making process again each fall.
Check out our guide to insurance enrollment to explore these issues in more detail.
“It can be incredibly overwhelming, but I always tell patients it’s important to do the math first,” Ringwelski says.
This means sitting down and looking at exactly how much you spent on everything related to your illness and looking in-depth at what each plan offers. If you get your insurance through you or your spouse’s job, human resources can be a big help here.
“Too many people go for the cheapest plan but when you do the math, you may find that it is worth going with a higher-tier plan,” she says. “It may cost more money each month in premiums, but it could save you hundreds or thousands of dollars over the year.”
How Much Does Arthritis Cost?
Putting an exact number on the true cost is tough, particularly when you have a complicated case involving multiple diagnoses, as is the situation with many people with arthritis, Ringwelski says.
Let’s start with just the medical costs. A paper published in the journal Arthritis Care and Research looked at several studies about the direct medical costs of rheumatoid arthritis. The authors found that the total direct medical costs were estimated to be $12,509 for a patient with RA using any treatment regimen; for patients on biologic medication, the total direct medical costs were about $36,053.
While that price tag may seem astounding, keep in mind that biologic drugs may be the only medication that works for many people with inflammatory types of arthritis. The benefits may be so substantial that taking them may actually help you financially; for instance, by enabling you to work a full-time job that offers health insurance benefits or by reducing your need for other treatments because your disease is in remission, according to a study published in the International Journal of Environmental Research and Public Health.
Estimating the indirect costs of arthritis can be even trickier because they vary widely from person to person. What type of arthritis you have, the progression of your disease, your treatment regimen, your lifestyle, and your age, location, and gender can all affect the type of accommodations you need and extra expenses you may incur.
To help you get an idea of how arthritis has personally impacted people’s finances, we asked six patients to open up about how money is affecting their illness.
‘It’s the ‘arthritis tax’ — even normal things cost more’
Despite having rheumatoid arthritis, Elizabeth P., 36, of Ridgecrest, California, considers herself lucky, particularly financially. “I’m very fortunate because we have great insurance and I’ve never been in a position where I’ve had to choose between medicine and food,” she says. “That said, RA still really messes with our finances.”
Between doctor office and prescription co-pays, she says she spends about $2,000 a year on top of the cost of her monthly insurance premiums. Her doctor’s office is two hours away so add on a few hundred dollars to cover gas. Then she estimates that she spends another $1,500 per year for other necessities, like a cane, compression wear, assistive devices, supplements, kinesiology tape, and a TENS unit.
Lastly, she has to budget for the food she needs to follow her arthritis-friendly diet. “It’s not even trendy stuff. With RA, some foods just trigger it so you can’t buy them and they’re often the convenience-type foods,” she says. “It means I have to spend more to buy whole foods and healthier options.”
She’s also had to skip things her doctor sees as necessary due to their cost. “I was prescribed physical therapy two times a week for basically forever but it was costing $350 a month and we just couldn’t sustain that so I had to quit even though I did find it helpful,” she says.
Another financial issue she has to regularly deal with is related to her prescription medications. “I’ve had to change one of my RA medications almost yearly because insurance decides they won’t cover it anymore,” she says. Then there’s her pain medication. Her insurance will only cover 80 pills every three months but her doctor prescribed her two pills per day or 60 pills per month. “I have to take less than prescribed — which isn’t enough to control my pain — and still pay out of pocket at least once every few months,” she says. “And, no, I’m not a drug addict. Chronic illness is terribly painful and living in constant pain has lots of unfortunate side effects, so I legitimately need daily pain meds.”
But perhaps the most surprising cost she says she’s encountered is the “arthritis tax” — extra money you have to spend to do normal activities. Think having to pay for special seats at theaters or events to accommodate your walker or upgrading to better hotel rooms when you travel or you’ll be in too much pain to walk when you get to your destination. “Even day-to-day stuff is more expensive with arthritis,” she says. “Like shoes! You have to buy the nicer brand because the cute, cheap ones hurt more than they’re worth.”
‘I had to choose between Christmas and seeing my doctor’
Finances inform almost every decision Ami P., 39, of Cheyenne, Wyoming, makes about her health — and she has to make a lot of decisions.
“I have rheumatoid arthritis, fibromyalgia, and other conditions related to autoimmune disorders, like eczema and a variety of allergies,” she says. “I’m trying to find a good treatment plan that will help with all of my symptoms but unfortunately I always have to think of the cost of something first, even before considering whether or not it will help me.”
Ami’s husband runs a business out of their home so Ami, her husband, and their two kids use a “cost-sharing insurance program” designed for small business owners who can’t afford typical health insurance. It works like a co-op, with a number of families contributing each month and then the program paying out based on certain conditions. “It actually saves us a ton of money in premiums, but it doesn’t kick in until we spend at least $500 on one given treatment,” she explains. “Of course, we meet that very quickly.”
Health insurance is only one piece of the puzzle, however. In addition to her regular medical team, which she pays copays to see, Ami sees a functional medicine doctor who doesn’t accept insurance. The couple paid $2,000 just for the initial consultation and then pays cash for follow-up visits, which she estimates cost an extra $800 per year.
Other medical costs include $100 a month in medications and supplements and $80 a month on chiropractic visits.
Then there are the other things that Ami considers essential to her health and well-being but aren’t necessarily medical, like food. She follows a strict anti-inflammatory diet with some added restrictions based on allergies. “Diet has been the biggest help for my pain but also the biggest expense in our budget, to the point where we sacrifice nearly everything else — eating out, buying new clothes, salon haircuts — to afford it,” she says. “It’s totally worth it though; I’d rather cook all my meals and wear used clothes and manage my pain, than eat out, shop all the time, and be in pain.”
Perhaps the strangest expense linked to her arthritis is her mattress. Between her fibromyalgia and rheumatoid arthritis, she is in chronic pain, which has led to chronic insomnia. (The insomnia then worsens her pain, causing a vicious cycle. This phenomenon is called painsomnia.) Simply finding a comfortable position to lie down in can be very difficult, so she’s always trying out different types of mattresses and sleep aids. “We’ve been through three mattresses in four years and they weren’t cheap,” she says. “I currently hate our mattress but we can’t afford a different one, so I just don’t sleep much.”
What’s more, Ami says that stress she incurs over her finances has made her chronic illnesses worse. “When I get stressed over money, I don’t sleep and I feel the pain more,” she says. “I’ve had to learn to try not to stress over the finances and just do my best where I can.”
Her zen attitude doesn’t always work, though — and she’s been forced to make some very difficult choices. “Last December I desperately needed a follow-up with my doctor but I knew I couldn’t do Christmas for my family and visit her,” she says. “I chose Christmas. I was in so much pain, but it was worth it to see the kids so happy on Christmas morning.”
‘It’s not just the money I spend, it’s also the income I lose due to my arthritis’
A former athlete, Cheri G., 50, of Boulder County, Colorado, is used to spending money on her health and she considers living a healthy lifestyle well worth the expense. However, when she developed fibromyalgia, osteoarthritis in her spine, and chronic migraine, she says she had no idea how much it would cost to try living a “normal,” lifestyle, much less the athletic one she loved.
“In total, I’d say we spend about $20,000 each year on expenses related to my illnesses, and yes we have insurance,” she says. The couple has a standard HMO insurance plan through her husband’s job, but they have to meet their $7,000 deductible before the insurance kicks in. Then they each have a $10,000 out-of-pocket maximum, which she says they easily meet every year through co-pays for doctors, specialists, and medication.
One thing she includes in her indirect expenses is the hours each week she has had to spend learning the ins and outs of her insurance plan, dealing with medical bills, and making phone calls to appeal denied claims. “I have to work so hard to stay ‘in network’ or my insurance won’t cover it all,” she says. “There are so many other treatments that would help me, like alternative treatments, massage therapy, physical therapy, supplements, and personal training, but insurance won’t cover them and I can’t afford them.” Because the couple is on a strict budget, paying for them out of pocket simply isn’t an option.
But the most difficult part for her isn’t necessarily how expensive her arthritis and other illnesses are but the double whammy from the increased expenses and the loss of her income because she was forced to quit her job.
Now she walks dogs for money when her pain and schedule of doctors’ visits allow but she admits it’s not much. “I was an engineer and artist in my former life. I’ve gone from billing $250/hour to $17,” she says. “Sometimes I feel like I should try harder to do more but just dealing with the pain takes a lot out of me. It’s exhausting.” She says she was denied when she applied for disability benefits.
Her anxiety combined with an inability to afford other beneficial treatments definitely makes her illnesses worse, she says. “Lack of exercise and stress are huge pain triggers for me,” she says. “I’m hurt, I’m gaining weight, and I’m losing strength. I know if I could afford a gym or a personal trainer it would help so much, but it’s just not an option.”
Fortunately, Cheri’s partner has been very supportive of her but she says she still feels immense guilt over their financial situation. “I feel bad spending any money on myself. I don’t get my hair cut, I don’t buy more clothes than I absolutely need, and most of all, I try to never complain,” she says. “I have insurance. I have food, warmth, and safety. Many people with chronic illnesses don’t. I’m one of the lucky ones.”
‘Arthritis bankrupted me’
For seven years Josh A., 28, of Austin, Texas, worked as a landscaper. It was a very physically demanding job but he loved the work, designing beautiful gardens for mansions. Then, in 2017, he was diagnosed with ankylosing spondylitis and his entire life came to a screeching halt. “I went from making $150,000 a year and saving for my own mansion someday to being bankrupt and living out of my car,” he says.
His condition causes chronic pain and has limited his ability to do the physical aspects of his job so he was forced to quit when his boss couldn’t find a way to give him a desk position. But the real problem, he says, was that he’d been paid as a contractor, not an employee, and so was not eligible for health insurance or unemployment benefits. Within a year, medical costs had drained all of his savings, he says.
“I’m not even sure what the cost breakdown is, exactly, but all the money was gone before I knew it,” he says. Constantly switching medications, sky-high costs for specialists, and tests that required him to go to a hospital were the biggest contributing factors, he thinks.
His goal is to go to school and get a degree as a landscape architect, which would allow him to stay in the field he loves but give him the flexibility to work from home when needed. Hopefully then he’ll be able to afford health insurance, he says.
Unfortunately, he needs to get his AS under control before committing to school but that’s hard to do when he can’t afford his medications or doctor’s visits, much less food, exercise, supplements or other things that might help.
Things are improving, however. His doctor was able to help him get his medication for free through a program provided by the drug manufacturer. A lawyer friend helped him file for bankruptcy, which wiped out his medical debt. He’s been able to move in with a relative temporarily. Now he’s looking for financial aid to help him get back on his feet.
“I’ve applied for Medicaid and disability but have been denied,” he says. “My counselor says I just have to keep reapplying, that they deny everyone at least the first time around, if not more. I’m just going to keep applying until I get it.” In the meantime, he’s applying for every scholarship he can find.
“Something will work out, I know it. I’m a positive kind of guy,” he says. “What keeps blowing my mind is just how fast this financially ruined me. But I’m too young to let this define the rest of my life.”
‘Insurance premiums alone are more than 10 percent of our take-home pay’
“I am a full-time professional in my fifties making a good salary and yet I am living paycheck to paycheck,” says Mary R., 56, of Columbus, Ohio, who has inflammatory arthritis, chronic kidney disease, primary hyperparathyroidism, and diverticulitis. Her budget crunch isn’t because she’s taking lavish vacations or driving luxury cars — it’s because of her medical costs related to her chronic illnesses.
“I itemize for taxes and my out-of-pocket total last year was $4,724,” she says. “That doesn’t sound awful, but I pay into two insurance policies and that total was $9,854 last year. The insurance premiums alone are 12 percent of my take-home pay.”
Her many conditions have many recurring expenses. She routinely stays in the hospital, which costs $3,000 a day, even after payment from her insurances and financial aid from the hospital, she says. She takes 11 medications that run her $100 a month after insurance. She usually has four doctor visits a month, each with a $30 to $40 copay. In addition, there are necessary expenses that pop up intermittently, including disability adjustments to her car, adding steps and railings to the house, and purchasing a variety of smaller assistive devices she uses in her daily life.
“There are a lot of ‘hidden costs’ associated with my arthritis, like food for the special diet I must eat and the need for a gym membership because I need a gym with a pool,” she says.
Thank heaven for good insurance, right? It’s not all it’s cracked up to be, she says. She is able to purchase both regular and supplemental insurance through her employer but even then there are still a lot of things that aren’t covered. “For general visits and blood and urine tests, they do a great job of covering things, but when it gets to extensive testing, nuclear meds, hospital visits, etc., they don’t cover nearly enough,” she explains. “I ask the hospital for financial assistance but usually only get part of it paid.”
Another way she copes is by “buying out” her vacation days from her employer, allowing her to use them for other things. “I bought out 60 hours last year for medical appointments and testings,” she says. “I didn’t get a vacation.”
The costs related to her arthritis affect her health in a very real way: In the past she’s been unable to afford her necessary medications, which caused her illness to flare up and worsen. Plus, medical debt weighs heavily on her mind. “I’m currently over $3,000 in debt to one hospital and if I can’t figure out a way to pay it then I won’t be able to see my doctor anymore,” she says.
But the real toll is on her mental health as she worries over what this means for her and her kids’ futures. “My family goes without a lot. My car is 19 years old. We’ve had to use the food pantry at times,” she says. “It’s very painful. I have two college degrees; it shouldn’t be like this. Then the stress gives me migraine attacks, so I add another medication — and another copay.”
Be a Patient Advocate to Fight for Affordable Health Care
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
Batko B, et al. Indirect Costs of Rheumatoid Arthritis Depending on Type of Treatment-A Systematic Literature Review. International Journal of Environmental Research & Public Health. August 2019. doi: https://doi.org/10.3390/ijerph16162966.
Hresko A, et al. Medical Care Costs Associated With Rheumatoid Arthritis in the US: A Systematic Literature Review and Meta-Analysis. Arthritis Care & Research. October 2018. doi: https://doi.org/10.1002/acr.23512.
Interview with Marija Ringwelski, MPH, an expert in health care management and policy