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Navigating the Healthcare System With RA

Updated: Jun 8, 2023

health care

Where to Begin?

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

Having a chronic illness makes navigating the way even harder. Rheumatoid Arthritis (RA) is quite complex all by itself!

The COVID-19 pandemic has increased the burden of the healthcare system to meet the high demands of caring for these COVID-19 patients. This has forced most healthcare facilities to modify access to services, office space, and how services are delivered. These changes have further complicated navigating the healthcare system! You may have noticed more electronic communication, telehealth, and even remodeling of office spaces to accommodate this.

As a Nurse Practitioner and RA patient, I understand both sides of the frustration!

Why Bother?

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

First off, it’s always easier when you know what to expect. If you are prepared to spend time doing paperwork, awaiting referrals, or obtaining additional lab work you can plan better. This allows you to better manage your time and stay in control.

When you know the ins and outs, you can usually save money. Everyone wants to save money! Saving money on a prescription, a co-pay, or even the gas to get there and back can help budgeting for chronic illness easier.

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 study, from 2006, showed 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. It’s so important that, in 2002, the Centers for Medicare and Medicaid now have the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey. This is the first national, standardized, and publicly reported survey of patients’ perspectives of hospital care.

Insider Tips

Navigating the system efficiently can save you time. For example: If you know you need a test of some kind before a referral is done, you might be able to save an office visit.

Here are some insider tips on how to navigate the US healthcare system!

Talk With Your Insurance

Find a provider that’s contracted with your insurance plan. Start by calling your insurance and asking for a list of contracted providers. Then, ask people for referrals based on this list.

While you’re already calling your health insurance for the above list, ask them for their prescription formulary. This is the list that tells you exactly what medications are covered and what tier. Usually, there are 3-4 tiers, and this is how much they cost you out of pocket, with tier 1 typically being the cheapest. Bring this 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 medical provider and pharmacy to help with the prescribing process.

What do you do if your medications still aren’t covered or are too expensive?

Ask the office to do a prior authorization application for you. Sometimes the medical office can do a simple application for you that can reduce the cost.

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.

Ask your pharmacist or pharmacy staff for help. Sometimes they know about programs, applications, or coupons, too! This is usually true for smaller and specialty pharmacies.

…Back to navigating the system!

Dealing With Wait Times

Let’s talk about the dreaded wait times to see rheumatologists. The average wait time for a new patient to see a rheumatologist can be anywhere from 3-6 months. Some places are as long as 9 months. Here’s my advice– Just book the first available appointment. Even if it’s 3 months away, just book it. Typically, it’s a lot easier for an office to move an appointment up to a different date than start from scratch. You can also call the office every day to ask for cancellations or new availability. Another suggestion is to politely go to the office in person and ask if there are appointments available for the same day.

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 ask to speak directly to someone about your particular concern. Ask who the right person is for this particular question or concern. If there is someone specific you need to speak to, ask for their direct line. Ask if this service you're inquiring about, i.e. billing, is on-site or off-site. Often billing is not only off-site but also out-of-state. If one way doesn’t work, try the other.

Whenever possible, complete the office or facility registration paperwork ahead of time. Most places offer it online or will give it to you ahead of time if you stop by. Bring any and all records you have early, too (more on this later.) Often there is a delay in scanning documents into the electronic health system and it’s really helpful to give plenty of time for this necessary process.

Here are some other tips to keep in mind when navigating the US healthcare system.

Other Tips...

Each patient’s experience is different. Just because someone had a good experience with an office or a provider, does not guarantee it will be great for you. If you have a great experience, someone else may not. There are different needs, personality fits, and different priorities among patients.

Bring a friend. It always helps 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 bring someone if you’re having a procedure of any kind. You really never know how you’re going to tolerate it.

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

Keep a copy of medical records. Immunization records have become so important in the last 18 months! Keep a copy of yours handy. Be sure you’re registered with the CDC’s state vaccination tracking system for easy recall and verification.

Navigating the healthcare system with a chronic illness can be tough. I hope these tips have been helpful to you!

Join a Community of Chronic Illness Warriors

Here at Aila Health, we support people in their chronic illness journey. Join our community and connect with other people like you. Share your journey with others who truly understand what you are going through. Learn from others’ experiences and how they navigated their condition. Learn more.

About the Author

Stefanie Remson

Ms. Stefanie Remson MSN, APRN, FNP-BC is the CEO and Founder of She is a family nurse practitioner and is rheumatoid arthritis (RA) patient herself. She has spent her entire life serving the community as a healthcare professional and has refused to let RA slow her down. She has worked with The Arthritis Foundation, The Lupus Foundation of America, Healthline, Grace and Able, Arthritis Life, Musculo, Aila, and HopeX.

Pinterest: Rheumatoid Arthritis Coach


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