The Rheumatology Patient’s Primer to Health Insurance Part 1

Health insurance in the US is a curious thing and an utterly unique one if you compare us to other countries – this $1.6 trillion middle-man has managed to position itself as the lynchpin of our health care system, this equally complex yet opaque beast that, through lobbying, legislation, and the relentless pursuit of profit, has almost succeeding in making itself the requirement to access medical care in this country.

Rheumatology patients tend to need their insurance benefits more than others – rheumatology care is specialty care; these diseases need more specialized testing like MRI scans, pulmonary and cardiac testing, biopsies, etc. The medications we use are a split of cheap, easily accessible oral medications and the much more effective (but expensive!) specialty medications.

Now generally, insurers have profit on their mind and thus have an intrinsic conflict of interest – the less they pay out for care, the more their shareholders win. It follows that the harder they make it to get the test/medication, the less they’ll need to pay out. They employ what I’d describe best as obstructive blocks and traps, i.e. bad faith requirements or policies carefully engineered to either deter (or refuse) a particular test/procedure/medication or to force the cost onto the patient.

Navigating these as someone who’s been working in health care for 20 years, 10 of those years as a physician, is still sometimes tricky to me. Navigating it as a patient, particularly one who’s never seen these before, can be frustrating and costly. Generally for most of my patients who’ve run into one of these blocks or traps we can successfully navigate them around or out of entirely.

So, particularly since with a New Year comes new insurance plans (and new hassles!) for many of us, this timely pair of posts is to share some of the most common traps you’ll run into dealing with insurance (specifically for rheumatology patients!) This will be Part 1 of 2, today covering the traps behind prior authorizations and the confusing mess of specialty pharmacies. Part 2 will cover some of the more devious traps like copay accumulator plans and include tips for getting proper rheumatology care with Medicare.

I’ve added a good amount of commentary here based on my experience, highlighting what I consider traps and potential solutions – if anyone working in the insurance industry takes issue with what I present here, I’m happy to hear your side – email me at

Prior Authorizations

the insurer is determining what is appropriate for you“

Prior authorizations (PAs) – when an insurer refuses to pay for a covered test, procedure, or medication without first giving their approval the doctor, patient, or other entity needs to explicitly ask for.

My take: In other words, the insurer is determining what is appropriate for you. The line often given in defense of these is if they deny an authorization, they’re not saying you can’t have the said test/procedure/medication, but you’ll just need to pay the (exorbitant) price out-of-pocket, a rate that the insurers themselves have helped create in the first place. The industry claims these are essential to saving patients money and preventing unnecessary testing but it’s ultimately the shareholders who’ve saved the most (many insurers report billion dollar profits annually).

Ever in the pursuit of higher profits, Cigna and UHC were both exposed using artificial intelligence (AI) algorithms to deny PAs in 2023 alone. In a Propublica story published in March 2023 about Cigna (, they quoted anonymous former employees who said the Cigna PA reviewers would compete with each other for the most denials.

PAs are overused in rheumatology, used to gate-keep everything from biologics, MRIs, CTs, etc. On one occasion, I saw a prednisone prescription require an authorization (this normally averages $4 for 90 day supply, cash price on the worst of days). Expect a PA to be required for 100% of advanced imaging tests (CT, MRI, PET), 100% of biologic or oral specialty drug prescriptions, and often for pulmonary function tests (PFTs) or echocardiograms (TTEs).

Prior Authorization Traps:

Denials and Appeals: Many PA requirements are defined internally by an insurer but not shared with the patient or physician until after it’s already been denied, and the requirements can change on a moment’s notice. Inappropriate denials, like those reported with Cigna in 2023, may occur even you’ve met all the requirements and the physician provided all paperwork.

All insurers will have a defined appeal process that you or the physician can initiate often by calling, faxing or mailing. Believe it or not, I see more successes when the patient themselves initiates the appeal (the doctor’s office isn’t paying their paying customer after all, you are).

I had an authorization for a shoulder MRI denied and my appeal rejected until the patient himself called into Anthem to plead his case (and give them a piece of his mind). The MRI was approved the next day.

Some appeal processes…feel… intentionally designed to fail: another patient of mine with Anthem Blue Cross had an address listed on the denial to send a mailed appeal – after 30 days (they allow themselves 30 days to consider an appeal), the Anthem representative on the phone said that address we used was actually out of date, use this other one instead. Believe it or not, it happened again about 30 days later when we called for an update: a different Anthem representative then said the second address given to us was also wrong. The third address, of all three given by Anthem, was finally correct. The appeal was then denied anyway.

Tips for PAs:

  • Most offices do these PAs on your behalf but aren’t strictly required to do so – find someone that does. Realistically I don’t know of an office that won’t help out with these but know they may exist.
  • Your state’s insurance commissioner may be helpful for incorrect denials; they can be enlisted for help when the insurer’s appeal process plays out but not in your favor. I can vouch for numerous occasions how helpful the California insurance commissioner office has been in overturning nonsense denials. At least in CA, they will independently assign a medical reviewer to your denial. If they agree with your need for the procedure/medication, the state can compel the insurance company to approve the coverage or else face stiff penalties.
  • Advocate for yourself: the patient themself has a surprising amount of influence in overturning denied prior authorizations – after all, the patient is the paying customer.


Pharmacy Benefit Managers (PBMs) and Specialty Pharmacies

A PBM is an organization originally* designed as a middle-man to negotiate medication discounts between a medication manufacturer/wholesaler and an insurer, in doing so they help create a favorable/affordable drug formulary for an insurer. Basically: “We’ll put your medication on a desirable/preferred tier in our formulary if you sell it to us for a steep discount.” These also manage the PAs for medications on behalf of the health insurers.

I say originally designed as a middle-man because the largest PBMs have, over the years, been acquired by the insurers they were designed to negotiate on behalf of. The largest three, OptumRx (United Health Care), Caremark (CVS), and Express Scripts (Cigna) are now all owned by insurers and in total banked about $20 billion in profit in 2021 (note that doesn’t include Caremark’s profit which is integrated into CVS and not clearly separated out. CVS’ total profit in that year was $7.9 billion.)

A specialty pharmacy is a pharmacy dedicated to specialty medications like Enbrel, Humira, Otezla, and the like; these are usually mail-order to ship nationally. In their pure form, these are not significantly different from your local pharmacy, only differing in which medications they deal with and typically having a much smaller footprint/fewer locations.

The largest PBMs have sprouted specialty pharmacy arms within their corporate structures so they can directly dispense the medication they’ve negotiated from the drug manufacturers. Amongst other things, it allows them to keep more profit in-house. In the modern era, the largest specialty pharmacies have become synonymous with the large PBMs.

PBM/Specialty Pharmacy Traps:

Many insurer/PBM-combos will contractually-bind your benefits to a single specialty pharmacy (often their own) such that even if your biologic or other specialty medication is approved, your insurer only covers it if it gets dispensed from their own pharmacy (or the one they’ve negotiated a deal with).

This means, with rare exception, your UHC insurance will require you to get your specialty medication from their own pharmacy, OptumRx, or else they won’t cover it. Cigna will often force you to Express Scripts, Aetna to CVS Caremark (reminder: Aetna is owned by CVS).

In my experience, perhaps because you’re forced to use them anyway and there’s no one to compete with, these specialty pharmacies usually offer a terrible customer service experience. Mistakes are common. Hold times long.

PBM/Specialty Pharmacy Tips:

There currently isn’t a solution – contacting your local representative and senator may help since there has been surprisingly bipartisan attention on this nationally in 2023. But… if you need a specialty medication and you’re bound to a specific specialty pharmacy by your insurer, you currently won’t have a choice: you either get it through them or pay the artificially-high list price (I never recommend).

What I do recommend to all is:

  • If you’re eligible for a copay savings program with the manufacturer, sign-up for this before talking to the specialty pharmacy. Some specialty pharmacies will sign you up for the program on the phone with them, others won’t mention them to you and ask you for a $2000 co-pay.
  • Do not leave your credit card on-file with your specialty pharmacy/PBM (I’ve seen auto-charges for obscene amounts) or at dead-minimum review all charges carefully each month before a fill is dispensed and you’re charged.
  • If you’re facing a charge much larger than you expect, do not pay it. I wouldn’t expect to get any money back after the fact even if it was their mistake. Instead, call your physician for advice. If you’re enrolled in a copay savings program, call them and report the issue to them as well – they often have means of helping troubleshoot.

That’s all for this post! Stay tuned for Part 2 coming soon with additional traps and tips specifically for Medicare.

Email with any comments about your own experiences or tips navigating the health insurance waters, I’d love to hear!