I was diagnosed with my first chronic illness at age 5, so I’ve taken medication daily for basically as long as I can remember. As a result, I didn’t have any trouble accepting that treatment would be necessary when I was diagnosed with rheumatoid arthritis (RA) at age 25. Learning how these medications would be administered was a bit of a shock, but I simply believed my doctor when he assured me the benefits would outweigh the risks.
However, I realize that I am not the norm. Many patients who are diagnosed with RA have been perfectly healthy their whole lives and have rarely or never taken medications. Then all of a sudden, BAM!— doctors are recommending the regular use of medications. With scary risks and side effects. With needles and IVs. With mountains of paperwork and astronomical costs. Forever.
It can be a lot to take in and accept, and it should be a surprise to no one that some patients have trouble adjusting to their “new normal.” Putting and then keeping patients on the right path is something all rheumatology practices need to focus on. Based on my experience and interactions with other patients with RA, here are some of the biggest everyday issues patients face when it comes to drug adherence and how you can help.
Risks and Side Effects
Even if the chances are small, seeing words like “hospitalization” or “cancer” or “death” on our medication labels is very scary. In your eyes, the benefits may obviously outweigh the risks, but this isn’t always clear to patients, particularly those who haven’t yet come to terms with how serious untreated RA can be.
Side effects can also make us nervous. Laura L., a patient diagnosed with RA only a year ago, has experienced so many side effects since her diagnosis that she feels like she has to pick her poison.
“Do I skip the meds and feel good and present in the moment with my children?” she said. “Or do I take the meds and prevent long-term damage, even if it makes me miserable and causes me to lose time with my babies in the short-term?”
Weighing these pros and cons can be very difficult for patients, so please take our concerns seriously and help us understand the real risks of untreated RA. And if there is anything we can try to help minimize potential side effects, please let us know.
Getting the Medication
Once we have a prescription, getting our hands on the medication can often be easier said than done. The pharmacy location may not be convenient, our schedules may conflict with business hours, or we may struggle to even leave the house. Perhaps most frustratingly, sometimes we make it to the pharmacy only to discover they are waiting on a call or fax that is out of our hands.
Using specialty pharmacies can also be complicated. Stefanie S., who has been living with RA for 8 years, recently had her specialty pharmacy replace a simple online refill option with the inconvenient requirement to call and speak with someone every time she needs a refill.
“Sometimes they tell me I can order a refill,” she said, “but when it isn’t delivered as promised, they’ll tell me it was submitted too soon and my insurance denied it.” These frustrations can take a real toll on patients.
You can help by making sure prescriptions, prior authorizations, and refills are dealt with as efficiently as possible. We’d also appreciate any tips or help you can offer when it comes to understanding the specialty pharmacy process.
Paying for the Medication
Prior to being diagnosed with RA, most patients never imagine needing to pay for expensive medications on a regular basis. While I’m incredibly grateful that there are so many copay assistance programs to help us, I am continually amazed by how many patients have no idea that these programs even exist.
If you recommend a medication with a hefty price tag, please give us time to process the sticker shock. Try to keep in mind that it’s likely not the only increase in medical spending we are facing. There are also copays to doctors, bills for lab work, physical therapy, over the counter treatments, and more—as well as the impact RA can have on our ability to earn money. It’s very overwhelming.
Please make sure we understand that there are ways to decrease this financial burden. Better yet, hand us the appropriate enrollment papers for the copay assistance program before we leave your office.
Treatment vs. Life Goals
Another important challenge for patients with RA is figuring out how to balance treatment options with long-term life goals. Whether it’s finishing school, getting a promotion, or taking a dream vacation, if a recommended medication interferes significantly with what we want in our lives, we are going to be a lot less likely to take it regularly.
For me, starting a family was the most significant conflict with my RA treatment. I was lucky to have a rheumatologist who worked with me to find compatible treatment options, but if he had insisted on a treatment that was incompatible with pregnancy, I’m not sure I would have been able to comply.
“I think more time needs to be taken for counseling and partnering with patients,” recommended Laurie Proulx, Vice President of the Canadian Arthritis Patient Alliance. “I think as patients, we need to buy into the treatment plan to stick with it.”
Our life goals are important to us and need to be taken into consideration when making treatment decisions. If it is a topic you haven’t researched extensively—like the impact of medications on pregnancy or breastfeeding—please be open to letting us share our own research.
A Final Note About Language
Medical professionals absolutely need to know whether patients are taking medications as instructed, and I certainly understand the need for brevity in a patient’s chart. However, using language like “noncompliant” or “nonadherent” when actually discussing these topics with us can make us feel like we are being reprimanded or failing despite our best efforts.
Instead, we’d love it if you could spend some time trying to understand the specific challenges we are facing and brainstorming with us about how to overcome them. There’s a big difference between telling us we aren’t sticking to our treatment plan and asking how you can help. After all, in the end, we both want the same things—to find the best treatment option that will manage our disease, allow us to maintain our desired lifestyle, and not cause us to go broke in the process.
Mariah Zebrowski Leach is the creator of the award-winning blog From This Point Forward and manages a Facebook support group for moms with chronic illnesses called Mamas Facing Forward. She has written for numerous prominent health publications and websites.