Now that I'm not actively posing as a professor, it's easier to let out the deep, dark secret that sometimes I am exceptionally stupid.
The latest example is not only humbling in the extreme, but relevant to the subject of Medicare, drug costs, and the absurdity of our health care "system."
When we last spoke, I was trying to figure out how much it would cost to keep myself alive under Medicare, with various options and allowing for possible future changes in the drugs I take (and how they are delivered). Medicare supplemental ("Medigap") insurance looked like an attractive option, until I found out that Kentucky outlaws Medigap policies written to those under 65 (I haven't researched the rationale for this yet, but guess it involves fraud).
Nevertheless, I spent hours looking for quotes on Medigap policies, and getting increasingly frustrated. At some point, my eyes rolled back into my head, and I clicked on a website that I had been dodging for hours. I won't even put the name here, to limit collateral damage. Suffice it to say that it contained "medicare", the name of a large health insurance company, and "solutions". I KNEW this was a trap, but I was no longer functioning rationally. So I gave this obvious cybersquatting scumbucket my home phone number, name, and email address. It was like an out-of-body experience.
In less than a minute, the phone began to ring. I realized my mistake, but that wasn't going to do me much good. What's more, the calls weren't coming from one or a few places--they were coming from all kinds of different phone numbers, each connected to a boiler-room operation selling insurance (they didn't even generally know what kind of insurance I was "looking for"). I hung up on some, didn't answer others, concluded that the only short-term relief was to disconnect the phone, which I did. Took some deep breaths, and recalled that our landline was used only by two people whose contact we valued: Liz's mother (Fran) and our daughter (Rosie). Rosie calls regularly and she likes the randomness of calling the house rather than one or the other of our cell phones, but will get over it. Fran calls less often, and can easily be transitioned to calling Liz's phone, which I might pick up if it's not in Liz's possession anyway.
And we can save $30 a month! Not much downside, I guess. But I can't really feel positive about the change, under the circumstances. We (no, I) have been coerced by malign forces into a choice we (I) hadn't planned to make. Moreover, I played right into their hands. Once again, I have to wonder about how a person less informed, less educated, etc. can be expected to even survive in this environment. And now I'm thinking: I'm simply becoming one of those people I have been worrying about. I've got my Medicare card, my Social Security pension, my obsession with collecting the mail as soon as it arrives. I'm a goddamn senior citizen, for Christ's sake.
Sunday, June 17, 2018
Thursday, June 14, 2018
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!
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!
Monday, May 28, 2018
Drugs
I've mentioned the cost of drugs before. The new drugs getting FDA approval for MM are all very expensive, including two of the drugs I take every month, Revlimid and Ninlaro. A quick review: Revlimid (lenalidomide) is a close relative of thalidomide, a drug famous for causing horrific birth defects in the 1950s, but which really started a revolution in cancer treatment, even though no one really has a clear idea of how it works. It's called an "immune modulator" (IMiD), indicating that it does something to the immune system (up? down? any particular cell type?). One company, Celgene, rescued thalidomide from the ash heap of pharma history and has developed its successors, Revlimid and Pomalyst (pomalidomide). The last two are still under patent, and more about that later.
The other class of drug that has revolutionized MM treatment (to date--more are on the way) is what's called a proteasome inhibitor. The first of these was Velcade (bortezomib), patented by Takeda Pharmaceuticals. Proteasome inhibitors are at least a little better understood from a theoretical perspective, and have a (relatively) good track record in treating patients like me whose tumors have dispensed with the short arm of chromosome 17, home to the TP53 gene, which makes the critical tumor suppressor protein called p53. Takeda has two newer proteasome inhibitors on the market now: Kyprolis (carfilzomib), and Ninlaro (ixazomib). I have been taking Ninlaro for about a year and a half; it's great advantage over the competition is that it's a capsule to be swallowed rather than something to be injected (Velcade) or infused (Kyprolis).
I know that you are all alert readers, and you have undoubtedly detected a pattern here. One company (Celgene) makes three different versions of one class of drug, and another company (Takeda) makes three different versions of another class of drug. All six drugs are still under patent.
Celgene, in particular, has gone to great lengths to protect its monopoly on Revlimid, which has become an essential drug for the vast majority of MM patients. Patent protection will end soon, so in principle generic versions may become available. But in order for a generic drug manufacturer to get its version approved, the prospective drug maker has to show equivalence between its drug and the real thing. Celgene has found a way to take advantage of the fear that thalidomide's history has engendered in (at least) two sneaky ways.
Each month's supply comes with special warnings that women of childbearing age must not handle Revlimid and that men who have sex with women of childbearing age must wear condoms. These instructions are written on the packaging, of course, along with the novel-length "patient information" packet that comes with a new prescription. But they are also delivered, every month, by a nurse either in person or over the phone. It's the same script every month, so after 20 months or so of the same speech it's not clear what the point is (from the patient's perspective). I'd been wondering if this scheme had been cooked up by the FDA, by Celgene, or if it represented some compromise between the company and the regulators. I still don't know, but what is clear from the NPR piece cited above is that this arrangement is working very well for Celgene--because they patented it! Not the drug or the formulation of the capsules (of course they have patented these as well), but the speech, the script, the warnings and the rest. So even if some other drug maker produces a generic Revlimid, the current rules will require them to license the "patient education" materials from Celgene. What's more, they seem to be using these safety concerns to prevent rivals from obtaining enough of the drug to show that a generic version is equally safe and effective. Amazing!
The Ninlaro story isn't quite as nefarious (at least not yet). From my perspective, the main difficulty is that Ninlaro is officially regarded as a kind of "me too" medication rather than a clear first choice for some particular kind of patient. So it is no longer on the formulary (the list of drugs fully covered by my insurer [Express Scripts]). A monthly dose of Ninlaro consists of 3 capsules, each with 4mg of drug. Each capsule carries a list price of approximately $4000. Off formulary, my copay would be about $2000 each month. At the beginning of the year I got a letter on University of Louisville letterhead informing me of this change, but giving me the opportunity to enroll in a program called "SaveonSP" that would reduce my copay to $0. Sounded like a good deal, so I enrolled right away. I expected some letter confirming my enrollment, and after a few weeks I called back to verify my enrollment, since I'd heard nothing. Sure enough, they told me, I was enrolled--there was nothing more I had to do. So imagine my surprise when I was told this month that I had a $2000 copay because I was no longer covered by the manufacturer's copay assistance plan.
After some long and only moderately contentious conversation with a customer service rep, it was finally (I hope) established that I was covered under the SaveonSP program, and hence did not actually owe anybody $2000, at least not until my coverage changes again. It wasn't that hard for me to get things straightened out, as a careful reader and obsessive keeper of documentation, but I can only imagine how difficult it would be for a patient with more advanced disease, less education, maybe some dementia, and fewer resources of all kinds to deal with this level of complexity.
Who pays for my drugs? Well, it depends. If they're injectable, it's my health insurance, if I can swallow them, it's my prescription drug coverage, if I need help paying a high deductible, I might qualify for copay assistance from the manufacturer (each having its own rules about how much they will pay and to whom), or maybe SaveonSP. Who is SaveonSP? Funny you should ask.
The other class of drug that has revolutionized MM treatment (to date--more are on the way) is what's called a proteasome inhibitor. The first of these was Velcade (bortezomib), patented by Takeda Pharmaceuticals. Proteasome inhibitors are at least a little better understood from a theoretical perspective, and have a (relatively) good track record in treating patients like me whose tumors have dispensed with the short arm of chromosome 17, home to the TP53 gene, which makes the critical tumor suppressor protein called p53. Takeda has two newer proteasome inhibitors on the market now: Kyprolis (carfilzomib), and Ninlaro (ixazomib). I have been taking Ninlaro for about a year and a half; it's great advantage over the competition is that it's a capsule to be swallowed rather than something to be injected (Velcade) or infused (Kyprolis).
I know that you are all alert readers, and you have undoubtedly detected a pattern here. One company (Celgene) makes three different versions of one class of drug, and another company (Takeda) makes three different versions of another class of drug. All six drugs are still under patent.
Celgene, in particular, has gone to great lengths to protect its monopoly on Revlimid, which has become an essential drug for the vast majority of MM patients. Patent protection will end soon, so in principle generic versions may become available. But in order for a generic drug manufacturer to get its version approved, the prospective drug maker has to show equivalence between its drug and the real thing. Celgene has found a way to take advantage of the fear that thalidomide's history has engendered in (at least) two sneaky ways.
Each month's supply comes with special warnings that women of childbearing age must not handle Revlimid and that men who have sex with women of childbearing age must wear condoms. These instructions are written on the packaging, of course, along with the novel-length "patient information" packet that comes with a new prescription. But they are also delivered, every month, by a nurse either in person or over the phone. It's the same script every month, so after 20 months or so of the same speech it's not clear what the point is (from the patient's perspective). I'd been wondering if this scheme had been cooked up by the FDA, by Celgene, or if it represented some compromise between the company and the regulators. I still don't know, but what is clear from the NPR piece cited above is that this arrangement is working very well for Celgene--because they patented it! Not the drug or the formulation of the capsules (of course they have patented these as well), but the speech, the script, the warnings and the rest. So even if some other drug maker produces a generic Revlimid, the current rules will require them to license the "patient education" materials from Celgene. What's more, they seem to be using these safety concerns to prevent rivals from obtaining enough of the drug to show that a generic version is equally safe and effective. Amazing!
The Ninlaro story isn't quite as nefarious (at least not yet). From my perspective, the main difficulty is that Ninlaro is officially regarded as a kind of "me too" medication rather than a clear first choice for some particular kind of patient. So it is no longer on the formulary (the list of drugs fully covered by my insurer [Express Scripts]). A monthly dose of Ninlaro consists of 3 capsules, each with 4mg of drug. Each capsule carries a list price of approximately $4000. Off formulary, my copay would be about $2000 each month. At the beginning of the year I got a letter on University of Louisville letterhead informing me of this change, but giving me the opportunity to enroll in a program called "SaveonSP" that would reduce my copay to $0. Sounded like a good deal, so I enrolled right away. I expected some letter confirming my enrollment, and after a few weeks I called back to verify my enrollment, since I'd heard nothing. Sure enough, they told me, I was enrolled--there was nothing more I had to do. So imagine my surprise when I was told this month that I had a $2000 copay because I was no longer covered by the manufacturer's copay assistance plan.
After some long and only moderately contentious conversation with a customer service rep, it was finally (I hope) established that I was covered under the SaveonSP program, and hence did not actually owe anybody $2000, at least not until my coverage changes again. It wasn't that hard for me to get things straightened out, as a careful reader and obsessive keeper of documentation, but I can only imagine how difficult it would be for a patient with more advanced disease, less education, maybe some dementia, and fewer resources of all kinds to deal with this level of complexity.
Who pays for my drugs? Well, it depends. If they're injectable, it's my health insurance, if I can swallow them, it's my prescription drug coverage, if I need help paying a high deductible, I might qualify for copay assistance from the manufacturer (each having its own rules about how much they will pay and to whom), or maybe SaveonSP. Who is SaveonSP? Funny you should ask.
Apparently they're part of Express Scripts. I guess it's three different pieces: Accredo (also part of Express Scripts), the specialty pharmacy that actually fills the prescription, Express Scripts, the pharmacy benefit manager that pays the manufacturer for the drug, and SaveonSP that does whatever it is that they do. Do they always rely on patients to let the one hand know what the other hand is doing? It's a way to cut costs, I guess, since we are definitely not getting paid.
Monday, May 7, 2018
Told you so
Anyone waiting for an update on the lab values (and I have it on good authority that there is at least one such person) can now relax: the results are in.
Liz and I are working on relaxation in Edisto Beach, SC. It's a nice place, quiet for a beach town in the Southeast (= not a Spring Break destination). Lots of dolphins and pelicans to watch. A shame that I seem to have a problem with shrimp, but otherwise the seafood is good (though invariably fried). There is supposed to be a large native population of venus fly traps, pitcher plants, and the like, and even an island nearby with a feral population of rhesus macaques, which we hope to visit. We even have a view of the sunsets across St. Helena Sound. This was today:
Pretty sweet, until the no-see-ums started in.
But anyway, the labs. Here's the updated chart.
Kappa is still on its downward trend, maybe close to leveling out. Lambda is back to its previous level, apparently. The ratio is now 2.45. That's down from 2 months ago's 2.58, but not nearly as cool as last month's 1.11. These are results from two different labs, and without all the repeated measurements I would certainly be inclined to trust the Mayo 1.11 over the Baptist (Louisville) 2.45, but I don't have any specific reason to do so. I have plenty of results from Louisville now, and maybe enough from Mayo, to see if there is any consistent difference in results between the two. There are lots of possible reasons the results might differ, especially for the low-concentration lambda. Another reason to step back from each month's results and look at the bigger picture.
Liz and I are working on relaxation in Edisto Beach, SC. It's a nice place, quiet for a beach town in the Southeast (= not a Spring Break destination). Lots of dolphins and pelicans to watch. A shame that I seem to have a problem with shrimp, but otherwise the seafood is good (though invariably fried). There is supposed to be a large native population of venus fly traps, pitcher plants, and the like, and even an island nearby with a feral population of rhesus macaques, which we hope to visit. We even have a view of the sunsets across St. Helena Sound. This was today:
Pretty sweet, until the no-see-ums started in.
But anyway, the labs. Here's the updated chart.
Kappa is still on its downward trend, maybe close to leveling out. Lambda is back to its previous level, apparently. The ratio is now 2.45. That's down from 2 months ago's 2.58, but not nearly as cool as last month's 1.11. These are results from two different labs, and without all the repeated measurements I would certainly be inclined to trust the Mayo 1.11 over the Baptist (Louisville) 2.45, but I don't have any specific reason to do so. I have plenty of results from Louisville now, and maybe enough from Mayo, to see if there is any consistent difference in results between the two. There are lots of possible reasons the results might differ, especially for the low-concentration lambda. Another reason to step back from each month's results and look at the bigger picture.
Friday, April 27, 2018
Off topic (sort of)
So I'm going to have to go see the dentist, I guess. It's not that I have any tooth pain, though the gums are receding a bit--it's just that a good cleaning would be nice, as long as the hygienist doesn't get overly aggressive with the floss. I remember describing a session ~20 years ago as having been "flossed within an inch of my life" and that might even be almost true now if it happened again. Also dentists seem to hate Zometa (a bisphosphonate that helps keep my bones from eroding) because it can cause horrible jaw necrosis if too much is given for too long. So I will have some explaining to do, but I would like to get the teeth cleaned.
The point is that even last year, going to the dentist seemed silly and pointless. I've been certain that, whatever their flaws, my teeth were going to outlast the rest of me. You could argue that maybe this reflects my bias as a former mortuary site archaeologist (trust me, really they do keep very well, for thousands of years or more, depending on geological conditions). In fact, everything except the cancer faded into the background, especially anything health-related.
My heart, for example. Or my arteries and their contents. It seems that my cholesterol (specifically low-density lipoprotein, or LDL) has been creeping upwards in the last few years. Last year I would not have given it a second thought. This year, with things looking good, it's worth at least a little bit of thought. And there's an interesting complication with myeloma: it seems that the tumor cells themselves consume LDL, so that people with advanced MM tend to have very low LDL, and low LDL is correlated with worse survival (if you have MM). So it might be that my rising LDL is another sign of the myeloma being under control. It's probably not only that, though: high LDL could kill me all by itself.
I raised the question of taking a statin with my hematologist a couple of weeks ago, because I've read a couple of papers indicating that statins reduce the risk of death in myeloma patients, results that reinforce the idea that the tumors are competing for LDL. In fact, 10 years ago there was a lot of research built around the idea of using statins to treat myeloma--which mostly dried up when other drugs such as thalidomide and proteasome inhibitors emerged as game-changing therapies.
So, the question is simple: should I add a statin to the already-impressive list of medications? The answer is not so simple. The U.S. Preventive Services Task Force (USPTF) guidelines say that I should have a 10% chance of dying from heart disease or stroke in the next 10 years in order to make low-dose statins worth bothering with. They calculate my risk at 5.5%, not taking the myeloma into account, of course. So really the absolute risk for me of dying from heart disease or stroke in the next 10 years is much smaller than 5.5% (because the risk of dying from myeloma is so large [~ 100%] , the risk of dying from anything else has to shrink). But will the statins reduce my risk of dying of myeloma in the next 10 years? Probably not nearly as much as just keeping up with the many new myeloma drugs that have become available in the last few years.
But I will try to work at keeping the LDL down with diet and exercise, at least. Apparently the tumors like cheeseburgers and fries. I don't eat a lot of cheeseburgers, but maybe I could cut down on the fries.
The point is that even last year, going to the dentist seemed silly and pointless. I've been certain that, whatever their flaws, my teeth were going to outlast the rest of me. You could argue that maybe this reflects my bias as a former mortuary site archaeologist (trust me, really they do keep very well, for thousands of years or more, depending on geological conditions). In fact, everything except the cancer faded into the background, especially anything health-related.
My heart, for example. Or my arteries and their contents. It seems that my cholesterol (specifically low-density lipoprotein, or LDL) has been creeping upwards in the last few years. Last year I would not have given it a second thought. This year, with things looking good, it's worth at least a little bit of thought. And there's an interesting complication with myeloma: it seems that the tumor cells themselves consume LDL, so that people with advanced MM tend to have very low LDL, and low LDL is correlated with worse survival (if you have MM). So it might be that my rising LDL is another sign of the myeloma being under control. It's probably not only that, though: high LDL could kill me all by itself.
I raised the question of taking a statin with my hematologist a couple of weeks ago, because I've read a couple of papers indicating that statins reduce the risk of death in myeloma patients, results that reinforce the idea that the tumors are competing for LDL. In fact, 10 years ago there was a lot of research built around the idea of using statins to treat myeloma--which mostly dried up when other drugs such as thalidomide and proteasome inhibitors emerged as game-changing therapies.
So, the question is simple: should I add a statin to the already-impressive list of medications? The answer is not so simple. The U.S. Preventive Services Task Force (USPTF) guidelines say that I should have a 10% chance of dying from heart disease or stroke in the next 10 years in order to make low-dose statins worth bothering with. They calculate my risk at 5.5%, not taking the myeloma into account, of course. So really the absolute risk for me of dying from heart disease or stroke in the next 10 years is much smaller than 5.5% (because the risk of dying from myeloma is so large [~ 100%] , the risk of dying from anything else has to shrink). But will the statins reduce my risk of dying of myeloma in the next 10 years? Probably not nearly as much as just keeping up with the many new myeloma drugs that have become available in the last few years.
But I will try to work at keeping the LDL down with diet and exercise, at least. Apparently the tumors like cheeseburgers and fries. I don't eat a lot of cheeseburgers, but maybe I could cut down on the fries.
Friday, April 13, 2018
Rational
Just back from a follow-up visit to Mayo. It's indicative of the moment that we expected so little, and felt so beset on other fronts, that Liz and I decided that this might as well be a solo visit--fly straight to Rochester, do the medical stuff, and come home the next day. And do that for the first time without Liz alongside. The strangely prolonged winter provided additional motivation, since we didn't want to drive while snow was still falling in Kentucky, never mind what might be going on in Minnesota. It hardly seemed to matter that I'd rescheduled the visit from February to April--the difference in weather was subtle, at best.
Typical of a Mayo visit, I arrive the evening before because the first appointment is early the next day. It's still light outside, and I find my hotel is a bit farther from the clinic than I had intended. But the weather seems OK, and I take an early evening walk with an eye toward walking the next morning. It's good--mid-30's and some of the snow is melting . . . never mind that this is April, I can deal with this.
My first "appointment" is at 6:45 AM. It's really just to stand in line for blood draw, but the line gets long as the morning progresses, so I don't want to be too late. The hotel offers a shuttle at 6:00, but that's a little early in my view, given that I'd be arriving at 6:10 at the latest. Also there is snow falling and winds around 30-40 mph. Walking is out, I take an Uber.
I have a couple of hours to kill between phlebotomy and the doctor visit. One interesting feature of the Rochester campus is the extensive "subway" system connecting many downtown buildings with the clinic. I discover several new subterranean passageways, many with shopping opportunities (although few of these are open at 7:15 AM). It turns out that it is possible to walk from your fasting LDL blood draw straight to Dunkin' Donuts without going outside into the horrible maelstrom (but you can walk!). I wouldn't say it was easy, as it took me 3 years to figure this out. After breakfast (not from DD), I find a place where I can buy a new belt for less than it would cost me (via Uber) to recover the belt I left behind in the hotel.
One of the best things about Mayo is that your lab results are posted in real time as they are read. By the time I'm eating breakfast I can review my cell counts (all fine, platelets and red cells still a little low, but just where they've been parked for the last two years), and basic blood chemistry (totally unremarkable).
By the time I'm in the exam room, the number I've been waiting for shows up. It's the ratio of kappa/lambda protein in my blood. It's been trending downward since my stem cell transplants, from a high in the 100's when I was first diagnosed, to 2.6 a couple of weeks ago. The ideal is 1.0, because for patients like me the kappa protein is the one produced by the tumors, while the lambda protein is produced by normal plasma cells. There are also presumably normal plasma cells making kappa, in about the same proportion as the the lambda-generating cells, so if the ratio is close to 1.0, the tumors are effectively silent (not gone, just not causing any major mischief).
Amazingly, the ratio is 1.1. My doc comes in moments later, and I have the rare experience of telling her the good news. It's a nice moment, big smiles, let's keep doing what we're doing. The Wylie Coyote image (off the cliff, not yet falling) remains, but the impending fall seems farther off now.
For you data fans out there (anybody?), here's a chart of the kappa and lambda numbers post-transplant.
Something's funny here. The kappa number keeps falling, as we want it to. The lambda number has been very stable, and lower than normal, the whole time. Because the chemotherapy, in part, depresses lymphocytes in general, it's not surprising that the lambda number, representing the activity of normal plasma cells, is lower than the ideal. In the last two weeks, it seems, the lambda protein has doubled, while the kappa has dropped a bit, so my ratio of 2.6 from March 15 has become 1.1 on April 6. Is this real?
Probably not. Every measurement carries some unknown amount of error, and the most unusual- looking measurements are much more likely to be in error than are those that fall in line with other observations. We'll see in a few weeks, but I'll bet the next measurement will put the lambda back down a few notches, putting the ratio back up around 2 or so. In the end, it probably doesn't matter much--the news is still good.
Typical of a Mayo visit, I arrive the evening before because the first appointment is early the next day. It's still light outside, and I find my hotel is a bit farther from the clinic than I had intended. But the weather seems OK, and I take an early evening walk with an eye toward walking the next morning. It's good--mid-30's and some of the snow is melting . . . never mind that this is April, I can deal with this.
My first "appointment" is at 6:45 AM. It's really just to stand in line for blood draw, but the line gets long as the morning progresses, so I don't want to be too late. The hotel offers a shuttle at 6:00, but that's a little early in my view, given that I'd be arriving at 6:10 at the latest. Also there is snow falling and winds around 30-40 mph. Walking is out, I take an Uber.
I have a couple of hours to kill between phlebotomy and the doctor visit. One interesting feature of the Rochester campus is the extensive "subway" system connecting many downtown buildings with the clinic. I discover several new subterranean passageways, many with shopping opportunities (although few of these are open at 7:15 AM). It turns out that it is possible to walk from your fasting LDL blood draw straight to Dunkin' Donuts without going outside into the horrible maelstrom (but you can walk!). I wouldn't say it was easy, as it took me 3 years to figure this out. After breakfast (not from DD), I find a place where I can buy a new belt for less than it would cost me (via Uber) to recover the belt I left behind in the hotel.
One of the best things about Mayo is that your lab results are posted in real time as they are read. By the time I'm eating breakfast I can review my cell counts (all fine, platelets and red cells still a little low, but just where they've been parked for the last two years), and basic blood chemistry (totally unremarkable).
By the time I'm in the exam room, the number I've been waiting for shows up. It's the ratio of kappa/lambda protein in my blood. It's been trending downward since my stem cell transplants, from a high in the 100's when I was first diagnosed, to 2.6 a couple of weeks ago. The ideal is 1.0, because for patients like me the kappa protein is the one produced by the tumors, while the lambda protein is produced by normal plasma cells. There are also presumably normal plasma cells making kappa, in about the same proportion as the the lambda-generating cells, so if the ratio is close to 1.0, the tumors are effectively silent (not gone, just not causing any major mischief).
Amazingly, the ratio is 1.1. My doc comes in moments later, and I have the rare experience of telling her the good news. It's a nice moment, big smiles, let's keep doing what we're doing. The Wylie Coyote image (off the cliff, not yet falling) remains, but the impending fall seems farther off now.
For you data fans out there (anybody?), here's a chart of the kappa and lambda numbers post-transplant.
Something's funny here. The kappa number keeps falling, as we want it to. The lambda number has been very stable, and lower than normal, the whole time. Because the chemotherapy, in part, depresses lymphocytes in general, it's not surprising that the lambda number, representing the activity of normal plasma cells, is lower than the ideal. In the last two weeks, it seems, the lambda protein has doubled, while the kappa has dropped a bit, so my ratio of 2.6 from March 15 has become 1.1 on April 6. Is this real?
Probably not. Every measurement carries some unknown amount of error, and the most unusual- looking measurements are much more likely to be in error than are those that fall in line with other observations. We'll see in a few weeks, but I'll bet the next measurement will put the lambda back down a few notches, putting the ratio back up around 2 or so. In the end, it probably doesn't matter much--the news is still good.
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