This is the second half of our breakdown covering just a few of the traps we, as rheumatology patients, may come across when trying to navigate our health insurance system (see Part 1 here if you missed it). Today, we’re talking specifically about rheumatology medications as it pertains to Medicare and then getting into some specifics about how we access these medications with commercial insurance.
Modern Medicare Part… Explained
Some quick, relevant definitions for the different Medicare parts. If you have commercial/employer insurance and just want to skip to those relevant sections that might affect you, scroll down to Specialty Medication Scams.
Medicare Parts A and B: Medicare’s medical benefits, i.e. insurance coverage for inpatient and outpatient services. If listed as a covered benefit (one pretty easily searchable by anyone on cms.gov), you’ll have a 20% coinsurance after your deductible. That is, 80% of the balance is paid by Medicare after your deductible is met which is usually around $250 per year. That remaining 20% balance is either paid by the patient, or, as commonly is obtained, the patient’s optional supplemental “Medigap” plan will pay that 20% balance (they often cover your annual deductible, too!). These plans cost a bit extra but they’re often well, well worth the price especially if you have more than a couple medical interactions per year.
Key point: The phrase here is covered: if it’s a covered benefit (i.e. a procedure like office visit, knee injection, or MRI), it’s covered, period. In contrast to Medicare Advantage or commercial insurance, there are no prior authorizations here (except for a short list of mostly cosmetic procedures). You simply get the test/procedure/visit scheduled and that’s it.
Medicare Part D – the optional plans that provide pharmacy benefits; i.e. coverage for prescription medications when paired with an eligible Part A/B. These plans are tightly regulated by Medicare but are administered by the commercial insurers like Anthem, Aetna, many others.
And then finally there are…
Medicare Advantage/Part C plans
The trap: Medicare Advantage plans (that’s the entire trap)
These deserve special mention. Medicare Advantage (or Part C) plans are an elective plan where you’ll forgo Medicare Part A/B and essentially give your benefits away to a commercial insurer. In exchange, they are legally-bound (although this isn’t always enforced well) to provide inpatient and outpatient coverage for everything that Medicare Part A/B would normally cover, and they nearly always provide a drug plan that may or may not be worth much at all (i.e. it’s a full replacement for Medicare Part A, B, and D). To make these more appealing, plans also throw in fringe benefits like cheap dental coverage, gym membership discounts, or even in some cases a few dollars for groceries. There are aggressive marketing campaigns for these that take place every open enrollment season: expect cold calls to your house, mailers, TV commercials with celebrities, and more. This is for good reason: Advantage plans make commercial insurers a LOT of money.
Why it’s a trap: When you start peeling back the surface and need to actually access the health system, you’ll find these plans have aggressive limits on care. After all, these are commercial insurers who bank larger profits the less money they have to pay out for care. The short list of limits: prior authorizations are required for even the cheapest dollar-store generic medications or to see nearly any specialist. Patients are very often restricted into HMO networks which greatly limits your choice of doctor. Prescription coverage is a crap-shoot; occasionally you’ll find sub-$100 medications covered for very small copays (or free), but in many cases your medication copay will be HIGHER than that medication’s cash price (and far, far higher than the wholesale cost of that medication). These programs actually make a profit on your medication copays. Speaking on behalf of so many physicians: do not be lulled into one of these plans without fully understanding all of the red tape and all of the costs you may be subject to. Buyer beware.
One other note on these if the above wasn’t enough to give you pause: these plans are often rife with abuses. I’d suggest searching recent news for “Medicare Advantage scam” or “Medicare Advantage scandal” (I’d argue no matter when you’re reading this blog, good bet there’s been a story published within the last few months detailing a new controversy regarding these plans: the first Google result for me today detailed a $172 million penalty Cigna paid to the government in September 2023 for defrauding Medicare, lying to make their Medicare Advantage enrollees appear far sicker than they were).
The first 5 hits from a search “Medicare Advantage scandal” in Google, 2/23/2024
Key take home point here: Medicare Part B with a supplemental (“Medigap”) plan will cost slightly more in most cases, but will give you near bullet-proof coverage for any medical service without restrictions on network, utilization, OR in-office specialty medications (more on that next). Advantage plans, even with the large number of promises they offer, tend to be hollow and leave patients with regret and a large share of their medical bill (far more than “plain” Medicare A/B would)
Getting Rheumatology (Specialty/Biologic) Medications with Medicare
There are two arms to someone’s health insurance benefits that become relevant for medications: pharmacy benefits and medical benefits.
- Pharmacy benefits: any medication generally administered at home. This includes any oral/topical medications and any biologic therapies you inject at home under the skin, like Enbrel, Humira, and many others. Pharmacy benefits are what we think of when we think about prescription drug coverage. Your plan has a formulary with a list of medications they cover at different costs to you which you can use at a retail or mail order pharmacy.Remember: Medicare Part A and B do not offer these pharmacy/prescription benefits – you have to purchase pharmacy benefits separately through a Part D plan or by going Medicare Advantage.
- Medical benefits: covers any medication given in the office or at your home by a healthcare professional, like a medical assistant, RN, or physician. These most commonly are intramuscular injections and IV infusions (but includes joint injections and such as well since we’re talking rheumatology).
The loophole: Medicare Part A and B covers medical benefits which means it covers in-office medications under that same umbrella.
This is a wildly powerful loophole to accessing biologic therapies – and it’s an incredibly reliable one. In other words, out of the gate without any supplemental plan, Medicare covers 80% of an FDA-approved infusion/in-office injection without question. With a supplemental plan (Medigap plan), you’re very often covered to 100% of that cost. Period. Every time. No authorization required, no delay in getting you scheduled for a medication you might need. If you need it done, how quickly can you get here for an appointment? It’s that simple.
Once we hit Medicare age, myself and many other rheumatologists suggest switching biologic therapies to either infusions or in-office injections since it becomes the most reliable and affordable means for anyone to access them.
What about Medicare Advantage and infusions?
Hit or miss. Again, the infusions are medical benefits: by law, if Medicare Part B would consider something like an office visit or a medication a covered service, a Medicare Advantage plan has to cover it as well.
But here’s the trap: the game played here is that “covered” doesn’t mean “reasonable cost”. Yes, sure, your infusion might be approved after a prior authorization and therefore be “covered” after a copay. What’s your out-of-pocket cost, your copay? Don’t be surprised to find out it can range from a few dollars to a few thousand dollars per infusion. They have no rules on the costs of any of their services they’re forced to cover and so, as often the case is, the insurer will chip in practically no money at all for you toward these medications. “Covered”, sure, but covering only a tiny fraction of the cost.
The same infusion that would be free to the patient on a Part B plan with supplement.
What about home injectables and oral specialty medications on Medicare?
Home injectables and your other oral specialty prescriptions aren’t generally considered accessible to most Medicare patients: while these meds are often listed as covered on Medicare Advantage or Part D plans. However, it’s the same game played here in that “covered” doesn’t mean affordable. Copays for a month of “covered” Enbrel or Humira on either an Advantage plan or the vast majority of Part D plans can still often be $1000 a month or even higher. “Yes, we cover that! Your copay is $1000 please.” What are we all paying for here?
The trap: when it comes to shopping for either a Part D OR a Medicare Advantage plan, and you know you may need a specialty medication for your condition, *call* that plan first and get specifics about how much out-of-pocket you’ll owe for your medications. There ARE plans where certain home injectables or infusions are well-covered, but I’d argue they’re the exceptions, not the rule. That said, keep in mind these plans change which drugs they prefer and cover on a regular basis annually (some as often as twice a year).
The Specialty Medication Scams: Quick Notes on Pricing and Value (Rebates, Copay Assistance and Accumulators)
Understanding Pricing and Rebates
A couple quick definitions…
Specialty medication – high-dollar medications most often seen in rheumatology and oncology, typically with list prices $10,000 per year, and much higher. For rheumatology, this includes all biologics (Enbrel, Humira, many others) and certain high-dollar oral drugs like Otezla, Xeljanz, Rinvoq, and Sotyktu.
Pharmacy benefit manager (PBM) – see Part 1 of my post for more details about these. For the sake of below, remember that nowadays in most cases a PBM and specialty pharmacy are the same entity.
It’s fairly easy to search the list price of a biologic medication on Google – they’re out there and you might have heard these drugs are listed at ridiculously high prices, i.e. on the order of $65,000 per year for Humira, for example (for a drug that came to market around 24 years ago now!)
Now, insurers want us to believe we’re getting incredible value for our premiums especially when it comes to accessing these high-dollar medications. For that Humira example at $65,000/year, some might argue that an insurance copay of $1,000 a month is a total bargain: with that copay, you’d be saving almost $50,000 off that list price every year, wouldn’t you be?
There is a pricing shell game that goes on with specialty medications. There are actually (at least) three prices for a given medication.
- The “list price” of a drug. This is an arbitrarily high starting price that, believe me or not, is not intended for the patient to ever actually pay. That said, an unscrupulous pharmacy or insurer that doesn’t cover the drug will happily take this money from you.
- The price the insurer/PBM actually pays for that drug. This price includes a hidden rebate the manufacturer pays to the PBM to include their medication on formulary. These actual rebate amounts are kept as trade secrets but I’ve read estimates these lower the drug’s cost to 10-30% of the list price!
- The price you pay to the pharmacy or the mail order/specialty pharmacy to get your medication. If you have insurance, this is a near-arbitrary copay that might be $5 per month or $2000 per month. It has little bearing on the price the insurer/PBM actually paid for the medication themselves to stock it. *If you have commercial insurance, read on to Copay Assistance in the next section: even these massive copays of $2000 per month are NOT what you’re intended to pay.
The issue with all the above is transparency: we never know how much our specialty pharmacy/PBM is actually paying for a given drug. In many cases, despite paying large amounts of money for prescription coverage with your insurance plan (coverage you’d think should pay for these medications), insurers and their PBMs actually can hugely profit from taking large copays from their patients – recall how much profit the big three PBMs make in Part 1 of this post last month.
The trap: There’s no avoidable trap to describe here like in other sections; this pricing structure is what we’re stuck with for the time being. Fortunately, some states are discussing legislation that makes that middle PBM pricing step much more transparent and some states even going further with legislation that forces that huge 70-90% rebate/discount a PBM gets to pass directly on to their patients: these bills are being fought tooth-and-nail by insurers for obvious reasons. But, for now, there’s no way around this: we have to play the game like this for the time being.
Copay Assistance and Accumulator Plans (Commercial Insurance Only!)
Tying into above, as long as you have commercial insurance, there’s an escape hatch for many of the massive $1000+ per month specialty medication copays. With most rheumatology and I’ll say most specialty medications in general, manufacturers have developed and funded copay assistance programs designed to offset that massive monthly copay down to a “normal” number, like $0 to $15 a month. Your insurer/PBM charges you $1000 per month for your Humira, like above for example, and instead of paying that on your credit card, you’re given what amounts to be a specialized debit card to knock that price down to $5. You pay $5, the medication is shipped, and everyone more or less wins. This isn’t for low income individuals, by the way – these are for everyone with commercial/employer-sponsored insurance.
A reminder, copay assistance programs are only intended for commercially-insured patients only – copay assistance programs are not allowed by Medicare for their enrollees and this includes Advantage plans as well. This may or may not ever change in the future (I wish it would!)
Think of the programs as a subsidy the manufacturer is paying the insurer/PBM on your behalf so you can use the medication you and your doctor think is best for you. For commercial/employer-insured patients, these programs should be considered mandatory to enroll in as soon as you and your doctor decide to move toward a specific medication (ask them for help if they don’t direct you immediately). You don’t even need to have the insurance approval in-hand to enroll in virtually all cases, and in most cases these programs can even help with tricky insurance appeals if necessary.
You might argue – why can’t we just have a low copay to begin with and skip this extra step? And you’d be right. Nowhere else in the world does this but we have the pleasure of dealing with it.
Since these programs have sprouted up in the last 20 years, so also have traps surrounding their use.
The Trap: Copay Accumulator Plans
Copay assistance programs offer you cards loaded with a fixed dollar amount (generally around $12,000 to $15,000), an amount intended high enough to cover the deductible of any insurance plan out there. Since the cash on these cards are intended to count toward your deductible, you hit your deductible quickly early in the year and for the remainder of the year, your insurer picks up the tab and covers your medication. The result? You’re covered for that medication for the whole year, every year, and regardless of your income.
Except… when your insurance refuses to apply this copay assistance cash toward your deductible (and simply pockets the money instead then charges you full price copays).
A Trump-era rule in 2020 allowed what are now called copay accumulator plans to exist. This is a rule an insurer can apply to any of their policies that prevents a copay assistance card from being applied towards your deductible. In other words, they’ll deplete the cash on the card and then leave you with a full-priced copay for the rest of the year. Insurance plans with this rule aren’t advertised as such or apparent, and in experience, if you call your insurer to ask them if your plan is a copay accumulator, you won’t always get a straight answer. In my experience, I’d specifically call out Anthem Blue Cross of employing these policies the most frequently on some of their commercial plans, although they’re not the only ones to do so. So, I’m picking on them in the example below.
It would happen something like this:
- You’ll start January with a fresh copay assistance card/balance.
- Say you’re forced to use Express Scripts by your Anthem Blue Cross plan to get your Humira prescription – Express Scripts charges your copay card as usual and your out-of-pocket monthly is $0. The actual charge going on the copay card behind the scenes is roughly $3,000 a month but it’s NOT applied to your deductible.
- Come May that year, your copay assistance card is fully exhausted after being charged $12,000 that year already. The amount applied to your deductible thus far? $0.
- Your Humira copay for May, and each month until your maximum out-of-pocket is hit, comes to $3,000 monthly.
If this sounds like the insurer is double-dipping both the manufacturer and the patient’s checkbook, they are.
As of time of writing, and just since 2020, already 19 states have understandably banned these plans as anti-consumer. California and many others, unfortunately, have yet to and face an uphill battle against the insurance lobby to do so.
Since these entire plans are the traps, here are some key points:
- Be aware these exist and ask for help: if you have a copay assistance card for your biologic/specialty medication and, suddenly, halfway through the year your specialty pharmacy asks for an outrageous copay amount from you for your next fill (this often happens in the April-July window in most copay accumulator plans), call your doctor’s office as soon as possible to let them know. They can work with you, your insurance, and your biologic manufacturer to troubleshoot.
- Don’t pay any unexpectedly high copays! If faced with an unexpectedly high charge from your specialty pharmacy, regardless of the cause, DO NOT PAY IT. Even when mistakes occur on the part of the PBM/specialty pharmacy (say they didn’t run the copay assistance card by mistake, for instance), I’ve never heard of one of my patients successfully getting a refund. Call your doctor’s office for troubleshooting advice. In some cases switching medications is the only solution..
- Copay accumulator plans are more common with, but not exclusive to, high deductible health savings plans (HDSPs). Don’t let this discourage you from using HDSPs (they’re great plans for the right folks), but research your plan first and ask if they are a copay accumulator before you sign.
Ultimately..
I felt like I could’ve continued writing about the traps and pitfalls for pages and pages more which I’d argue speaks to how frustratingly difficult our healthcare system has become to navigate. We live in such a difficult climate to get good quality healthcare for a transparent fee without hassle. Whether fortunate or not, rheumatology offices are often experts at navigating those insurance waters (out of necessity!) simply because our treatment plans so frequently intersect with insurers. Reach out to your doctor if you have a struggle with insurance, your pharmacy, or otherwise – odds are we have a way to help. Thanks for reading!