Navigating the U.S. Healthcare System as a Nurse Practitioner Living with RA

Navigating the healthcare system can be frustrating, exhausting, and full of dead ends and rabbit holes.

Having a chronic illness makes that navigation even more complicated. As someone who lives with rheumatoid arthritis (RA), I understand how managing symptoms, pain, and medication is already challenging enough without the added burden of a complex system.

In order to meet the demands presented by COVID-19, most healthcare facilities have had to modify access to services, office spaces, and how care is delivered — further complicating the healthcare ecosphere.

As a nurse practitioner and an RA patient, I understand both sides of the frustration with our current healthcare system, as well as how important it is to arm yourself with the tools and information to best navigate it.

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Why should you want to be better at navigating the system?

Stay in control: First off, it’s easier when you know what to expect. If you are prepared to get the necessary paperwork, referrals, and additional lab work, you can better manage your time and stay in control of your care from start to finish.

Save money: When you know the ins and outs, you can usually save money as well. Saving money on a prescription, a copay, or even the gas to get there and back can help make budgeting for a chronic illness easier.

Receive better care: People who are more active in their care usually report higher satisfaction. This means they are happier with the care they receive when they are involved.

This 2006 study shows a need for a more flexible and patient-centered care model, in which patients can decide which services they need and how these services should be delivered.

Patients overwhelmingly expressed a desire for a different model, so much so that in 2002, the Centers for Medicare & Medicaid Services developed the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey. This was the first national, standardized, and publicly reported survey of patients’ perspectives of hospital care.

Save time: Navigating the system efficiently can save you time. For example, if you know you need a certain test before a referral is given, you might be able to save yourself an office visit.

Navigating insurance and finances

Comprehend your coverage: If you have insurance, start by finding a provider contracted with your insurance plan. You can do this by calling your insurance and asking for a list of contracted providers. Then, ask for specific referrals based on this list.

Prescription preparation: While you’re calling your health insurance for the above list, ask them for their prescription formulary. This is the list that tells you exactly which medications are covered at each tier. The tiers are categories of medications grouped by how much they cost you out of pocket. There are usually three to four tiers, with the first tier typically being the cheapest.

Bring this list with you to your appointments. Check the medications prescribed against this list prior to leaving your appointment. You could also provide this list to your healthcare professional and pharmacy to help with the prescribing process.

Understand financial alternatives: If your medications still aren’t covered or are too expensive, ask the medical office to do a prior authorization application for you. Sometimes the office can do a simple application for you that can reduce the cost.

You can also contact the drug manufacturer directly. There are many assistance programs for medications used to treat RA. Often these are lengthy and time consuming applications, but they are usually good for a year.

If you are still struggling to finance your prescriptions, ask your pharmacist or pharmacy staff for help. Sometimes they know about programs, applications, and coupons that can help. This is more frequently true for smaller and specialty pharmacies.

Navigating appointments and professional care

Get an appointment: If you have been dealing with RA for some time, you are no stranger to the dreaded wait times to see rheumatologists. The average wait time for a new patient to see a rheumatologist can be anywhere from 3 to 6 months. At some offices, the wait time can be as long as 9 months.

Try to book the first available appointment. Even if it’s 3 months away, book it. Typically, it’s easier for an office to move an appointment up to a different date than to start from scratch. You can also call the office consistently to ask about any cancellations or new availability.

Sometimes getting something done is a matter of the method you use to approach it.

Try to call at different times of the day. Try to avoid calling during traditional lunch hours. Try to go in person and kindly ask to speak directly to someone about your particular concern. Ask who the right person is for your particular question or concern. If there is someone specific you need to speak with, ask for their direct line.

Prepare for paperwork: Whenever possible, complete the office or facility registration paperwork ahead of time. Most places offer paperwork online or will give it to you ahead of time if you stop by. Bring any and all records you have to your appointment and try to arrive early.

Take notes: Sometimes we need time to process and collect our thoughts before asking questions. If you want to use video or audio recording during your visit, you need to first obtain permission from the office and healthcare professional.

Immunization records have become so important in the last 18 months. Keep a copy of yours handy. Check if your state has an immunization information system, and if possible, check if you’re registered with it.

Navigating the nuances and emotional challenges

Bring a friend: It can help to have an extra set of ears and eyes at your appointments. Your spouse, friend, or family member might have different questions to ask. Most importantly, always try to bring someone if you’re having a procedure of any kind. You never know how you will react physically or emotionally.

If they cannot come into the office due to COVID-19 or other restrictions, see if you can organize drop-off and pickup with trusted individuals within your support network.

Keep an open mind: Each patient’s experience is different. Just because someone had a good experience with an office or a healthcare professional does not guarantee it will be the same for you. If you have a great experience, someone else may not. There are different needs, personality fits, and priorities between patients.

The bottom line

Navigating the healthcare system with a chronic illness is no easy feat. Taking these steps may seem overwhelming, but being able to take control of your treatment is well worth the effort.

With patience, perseverance, and a trusted support network, I am confident you will be able to better navigate the system and gain control over your chronic illness treatment plan.