More Drugs

First, let's get the good news out of the way. I'm still responding to my very expensive drugs:

Note that this is slightly altered from the last one I posted. It's on a log scale (y-axis), which doesn't make a huge difference, but more importantly it goes back to the early days (late 2015). That makes it clear that the lambda number bounces around more than it has lately, while the kappa is essentially just declining. Ultimately I guess we'd like to see the two of them bounce around the same range indefinitely, and they're putting on a good imitation of doing just that now. The current ratio is 1.85 (plus or minus lotsa).

So the other day I got my "Welcome to Medicare" packet. I was expecting it, even though I'm not (quite) 60, because I've been on Social Security Disability for a year and a half and they put you on Medicare automatically at 2 years. I've spent most of the last couple of days trying to work out what's the best arrangement of Medicare parts to cover my current (and possible future) needs--and how much that will cost. I've got at least 3 reasons to go into excruciating detail: 1) just to make sure I can describe this monster, a good test of whether I understand it as well as I think I do; 2) to help anyone else, even if they're not facing some dread disease with outrageous drug costs, navigate the weird choices and nomenclature; 3) somehow I find this entertaining. Liz points out that indignation would be a better response, and I hope to make some contribution to the discussion of how that can/should be done at some future point.

So you all know what you can do if this is not interesting or useful. You may be young enough to hope it will all be cleaned up when it becomes an issue for you. Good luck with that.

Medicare has parts, labeled A, B, C, and D. A is for hospital care, B for outpatient procedures, D for drugs, and C (I like to think) is for confusion. In principle, A, B, and D are fairly straightforward in concept, although as we'll see the details can be anything but. C is also called "Medicare Plus" or "Medicare Advantage" and basically allows insurance companies to offer HMO or PPO plans that combine benefits from A, B, and D into a single plan. D also works through insurers rather than coming straight from CMS (that's the federal government agency responsible for Medicare and Medicaid). So while A and B have one government-issued list of benefits, C and D come in many flavors from multiple vendors. That's enough general background. Now for the fun stuff.

What I'm automatically enrolled in is A and B. B comes with a small monthly premium ($134). Under this scenario, the drugs I'm currently on (Revlimid and Ninlaro, never mind the others), not covered under A or B, would run (at current prices) $370,149 annually. So this is not looking like a great option to say the least.

So let's consider part D. There are multiple options here, but the best one offered locally is probably an Express Scripts plan (and I have such a nice relationship with their reps!). Here's how that would work for me. $27/month for the plan, $405 annual deductible, and big copays on Ninlaro and Revlimid, up to $5000. At $5000, part D's "catastrophic" coverage kicks in, covering 95% of drugs costs. I would easily blow through the non-catastrophic part of the coverage the first month, so for the rest of the year, I'd be on the hook for 5% of that $370,000 (give or take a few adjustments). So the drug costs with this plan come in at about $18,000--a big improvement, but not exactly cheap.

So what about part C? Again there are a lot of plans, but one of them offered locally (from Anthem) has 5 stars (from Medicare's rankings, about which I know very little, but it seems impressive). It's a PPO (preferred provider organization), meaning they cover out-of-network providers, just not as generously as in-network providers. More on that later (sorry!). The monthly premium is another $57/month on top of the $134 part B premium, but there are some compensating benefits, e.g., some vision and dental. The drug coverage is very similar to the part D plan above, but a little more expensive, coming in at about $22,000 for the year.

So it looks as though I'll end up about $20,000/year, give or take. That wasn't too difficult to figure out, but: what if something changes? I know it will, just not when. So let's review the disease status now--well-controlled but high-risk multiple myeloma. It will progress, and despite my current state of well-being, I am pretty far out on the survival curve at two years post-transplant and three years post-diagnosis. When it progresses, we'll reshuffle the drugs. Will we choose some old chestnut that been off patent for 20 years and has lots of generics? Hah! Actually I'm already taking that one (dexamethasone) and it's so cheap it's not even part of the discussion. Just this year, Velcade (bortezomib) has a generic competitor, making it the only one of the new class of much more effective drugs to age into the category of having competition. Generic lenalidomide (Revlimid) could hit the market in a year or two, unless Celgene's dirty tricks keep it away.

But realistically, I'm going to want one of the newer, better drugs (some of them really are better). One or more in this list, most likely: Kyprolis, Pomalyst, Darzalex, Empliciti, Farydak, Selinexor (if it gets FDA approval, which looks very likely), or one of the half-dozen or so promising drugs in trials now. The first two would replace Ninlaro and/or Revlimid, respectively. The others might be added. Some of these drugs (Kyprolis, Darazalex, Empliciti) are administered by infusion; the others are oral meds). And here's the thing I haven't mentioned yet: if a drug is infused or injected, it's covered by Medicare part B. At 80%. So a drug that lists for $200,000 (cheap!) would be $40,000 to me, and there might be more than one of those.

Stop me if this sounds like doing your taxes (it won't stop me, though). It turns out that part C plans have a hard stop on out-of-pocket costs. The Anthem plan limits out-of-pocket to $5900 in-network ($6900 out-of-network). So now the injectable/infusible drugs are suddenly much more affordable. They're not more fun (infusion centers are generally disturbing places to spend quality time, and travel is limited), but Darzalex in particular requires just one infusion a month and the longish-term results look very, very good. Kyprolis is probably also an upgrade over Ninlaro in terms of efficacy if not convenience.

But wait! There's Medigap (supplemental insurance), too. This comes in a dizzying variety of forms, again from a variety of insurers. Just to be helpful, they are labeled with letters from A to . . . something, and there is no relationship between Medigap plan A and Medicare part A (or B, C, D, etc.). The relevant one for me would be plan "F," because it would cover all my copays for injectables. Premiums are age-dependent, and follow an interesting pattern--high (around $400/month) for ages < 65, suddenly dropping to ~ $150/month at 65, then rising slowly. The reason for this is grim, but clear: the only people in Medicare under age 65 are people like me who are either very ill or very likely to become very ill in the near future. Most of the people who get enrolled in Medicare at age 65 are comparatively just fine. Another consideration is that you really have to sign up for Medigap insurance right away, or you will have to pay penalties and may be denied coverage.

So this post has gone on much longer than I anticipated. Sorry. Also, it's not like I've worked myself up to a clear choice at this point. As I see it, there are 3 contenders: A + B + D, which costs the least now but leaves me open to potentially outrageous expenses for injectables; A + B + D + Medigap F which costs the most now (but will drop if/when I reach 65); and C which costs a more now than A + B + D but limits how much any future injectables will cost.

Rough annual cost for A+B+D+Medigap F: $24,540.
Rough annual cost for C: $24,292.

Amazing how that works!

Future realistic scenario 1: Darzalex added, nothing dropped. I'm having trouble getting a street price for Darzalex, but it's safe to assume it will be outrageous. It makes little difference to these calculations, as long as it's more than $30,000/annually (a very safe assumption).

A+B+D+Medigap F: $24,540.
C: $24,540 + $5900 = $30,440.

Future realistic scenario 2: Darzalex and Kyprolis added, Ninlaro dropped. This essentially drops the cost under each plan by the same amount, about ~ $10,000. Adding the second expensive injectable changes nothing. I just get to hang out at the infusion center a lot more.

A+B+D+Medigap F: $14,540.
C: $14,540 + $5900 = $20,440.

So I guess the winner is A/B/D/F, although there are a few things I haven't tested yet (like will these insurers really sell me a policy)*. And lots of things I've undoubtedly missed. Stay tuned for further information (and anyone who wants to check my work, please comment).

*Update: well as it turns out, they won't, at least not in Kentucky, which requires that I be 65 to get supplemental insurance. So now it's down to C or moving to another state. Tempting!