“They price it because they can”
March 13, 2018 9:54 AM   Subscribe

Drug makers have raised prices on treatments for life-threatening or chronic conditions like multiple sclerosis, diabetes and cancer. In turn, insurers have shifted more of those costs onto consumers. Saddled with high deductibles and other out-of-pocket costs that expose them to a drug’s rising list price, many people are paying thousands of dollars a month merely to survive. These are the stories of Americans living daily with the reality of high-cost drugs. And there are millions of others just like them. The Price They Pay (ProPublica, NYT)
posted by The Whelk (43 comments total) 36 users marked this as a favorite
 
I've been idly noodling over a science-fictional short story in which people indenture themselves to pharmaceutical companies in order to get treatment and not die. It's the logical next step.
posted by adamrice at 9:59 AM on March 13 [1 favorite]


It's the logical next step.

Only for certain values of “logical.” Much like gun control works everywhere but the USA, universal healthcare can’t happen here because Reasons.
posted by Celsius1414 at 10:08 AM on March 13 [4 favorites]



I've been idly noodling over a science-fictional short story in which people indenture themselves to pharmaceutical companies in order to get treatment and not die. It's the logical next step.


Sounds a bit like RepoMan.
posted by KaizenSoze at 10:16 AM on March 13 [6 favorites]


also the Oryx and Crake series which is so achingly close to reality that you start feeling the disempowerment in your bones

only thing keeping the Pleeblands from that material reality are good folks like the ones at ProPublica who persistently call bullshit on the corporate-produced norm
posted by runt at 10:43 AM on March 13 [7 favorites]


...in which people indenture themselves to pharmaceutical companies in order to get treatment and not die. It's the logical next step.

"If you can't afford your medicine, AstraZeneca may be able to help."
posted by Thorzdad at 10:44 AM on March 13 [13 favorites]


Related: Intermountain Healthcare Hospitals eye making generics for 20 drugs that they say are overpriced or in short supply (Dan Mangan + auto-play video on CNBC, 18 Jan 2018)

* Groups representing more than 450 hospitals plan to form their own generic drug company, to make the drugs themselves or work with a contract drug maker.
* The new firm is looking to create generic versions of about 20 existing drugs that the hospitals say cost too much now or are in short supply.
-- Majority of the drug purchases to remain the same, this is to only target those drugs where supplies are limited to drive up prices, or prices are set artificially high.

I haven't found any updates to this story, but they've been working on this for years and only recently announced the plan, so it seems they only share information when they want to
* The firm expects the first of its pharmaceutical products to become available in 2019.
posted by filthy light thief at 10:49 AM on March 13 [19 favorites]


Retail cost of managing my wife's type 1 diabetes is over $2000 a month. We have a high deductible insurance plan and hit her deductible in 3 weeks. We will take out her annual out of pocket max sometime next month, leaving her with "free" (after an $1100/mo premium) healthcare for the rest of the year, while we rebuild the HSA account so that we have cash on hand when we do this over again next January, presumably with a larger premium and higher deductibles and out-of-pocket limits.

And we are lucky, as we can manage this. At least as long as I have company-sponsored insurance, anyway. If I lose that we probably have to find a way to sneak into Canada.
posted by COD at 11:02 AM on March 13 [8 favorites]


The fact that people can option out of purchasing certain items is often what drives prices down. An optional item at $25will sell at a much faster and higher rate than at $50. However because prescription drugs are a necessity and and not optional, there is no real financial benefit to keeping costs down.

Wall street doesn't do morality. They do profits. And though it's easy to just point the fingers at men in suits, the fact is that it is the system that is just set up this way. Even when very powerful investors stand up against amoral profits, the system often eats them up and spits them out. So its not even as simple as getting these entities to "care" when they are in a system that not only doesn't reward that sort of thing, but often actively punishes them for it. So I'm not even sure how it would be possible to stop the cycle without the government stepping in and enforcing.
posted by fantasticness at 11:32 AM on March 13 [2 favorites]


That's why we should have a different system. Corporate "healthcare" is a prescription* for cruelty.


* Intentional
posted by Kirth Gerson at 11:40 AM on March 13 [11 favorites]


And though it's easy to just point the fingers at men in suits, the fact is that it is the system that is just set up this way.

My partner, who is brilliant and contributes a ton to society (not that everybody doesn't deserve care) but still has a debilitating chronic illness, spends hours every week begging insurance companies for the drugs that keep her from being totally disabled. The system assumes that a person in her position can just be disabled and should be grateful that they're getting any treatment at all. The idea that someone like this wants to live a full and productive life is dismissed by people at all levels of our healthcare system. If you ask me the men in suits who run this thing are monsters who should never be allowed any sort of power over others.
posted by OverlappingElvis at 11:46 AM on March 13 [30 favorites]


This is such a multidimensionally fucked system.

One of the obvious low-hanging fruits is the acquisition of companies tht have licenses to make off-patent drugs for specific indications - and the jacking up of prices - (the "impax" story in the article) because of residual FDA approval. That shit has to end. See below

http://blogs.sciencemag.org/pipeline/archives/2017/05/26/fixing-the-generic-drug-process
http://blogs.sciencemag.org/pipeline/archives/2017/02/10/the-case-of-marathon-pharmaceuticals
http://blogs.sciencemag.org/pipeline/archives/2017/02/13/marathons-real-costs

There are other sins, though and many would be solved by Single payer.
.....To my knowledge, the NHS does not pay such crazy prices for all but the newest drugs.
posted by lalochezia at 11:59 AM on March 13 [3 favorites]




"If you ask me the men in suits who run this thing are monsters who should never be allowed any sort of power over others."

And the system has power over those men in suits so it doesn't matter whether they are monsters or not.

Herbalife comes to mind. Everyone knows that company is a pyramid scheme. Even the government, which outlawed pyramid schemes knows it is a pyramid scheme... But Herbalife makes so much money and has lined the pockets of so many people that the gov won't actually enforce the laws against them. So that even when Billionaire wall street investors like Ackman stand up and say- 'That is an amoral company preys on innocent families who do not realize they are getting had by an illegal scheme that the government should and hopefully will shut down soon.' all that ends up happening is that the market chews him up financially and the government does nothing to enforce their own laws to stop it. Then when other like-minded investors who aren't as powerful see this, they are less inclined to speak up themselves. So this is why it almost doesn't even matter if the guys in suits are "monsters" or not as you put it. It's like you put a bunch of people in a system like this and they all merge into one fucked up entity that doesn't know what to do with itself except eat people and metastasize in an insane effort to survive in the world it has found itself in. Kinda reminds me of the tentacle beasts in those anime films.
posted by fantasticness at 12:16 PM on March 13 [3 favorites]


Kinda reminds me of the tentacle beasts in those anime films.

No, pretty sure they're just shitty people who have chosen to make a lot of money on the suffering of others. Maybe it's just because I'm not in a position to make this kind of money but from where I'm sitting I see, what, maybe a few tens of thousands (?) of awful people making a ton of money and doing everything they can to perpetuate a terrible system while ordinary people (yes, including disabled and chronically ill people) are at best dealing with a demoralizing grind and at worst dead.
posted by OverlappingElvis at 12:51 PM on March 13 [6 favorites]


"And we are lucky, as we can manage this. At least as long as I have company-sponsored insurance, anyway. If I lose that we probably have to find a way to sneak into Canada."

Immigration into Canada requires a physical; it's possible (I do not know) that Canada has specific immigration policies designed to prevent immigrants from being a burden on their medical system. I'm sorry for your situation (and wasn't certain if you were joking).
posted by el io at 12:52 PM on March 13


it's possible (I do not know) that Canada has specific immigration policies designed to prevent immigrants from being a burden on their medical system.

They do. Although they are considering revising those rules, on the grounds they save little money (relatively speaking) and are inhumane.
posted by halation at 12:58 PM on March 13 [5 favorites]


I'm sorry for your situation (and wasn't certain if you were joking).

I was joking, mostly. I've looked into it, and I would need employer sponsorship to immigrate. The fact that my family founded Haneytown, NB doesn't seem to carry any weight ;)
posted by COD at 1:15 PM on March 13




Was this article pre-ACA or not? I can't tell anymore.
posted by Dashy at 2:42 PM on March 13


Both the OP link and The Whelk's are dated this month.
posted by Kirth Gerson at 2:47 PM on March 13


I've been idly noodling over a science-fictional short story in which people indenture themselves to pharmaceutical companies in order to get treatment and not die. It's the logical next step.

NEXT step?

That's been my life since my teen years. Your story just removes the middleman, and would actually be less precarious and stressful. It may be different for people with a stable, middle-class or upper-middle-class family background going back a generation or two, but without a private safety net, that's life, baby.
posted by The Underpants Monster at 2:55 PM on March 13 [4 favorites]


(yes, I see the dates, my attempt at sarcasm on the internet failed again)
posted by Dashy at 3:04 PM on March 13 [1 favorite]


There are some mentions in the article about the ACA improving things, but the ACA is a band-aid over a gaping chest wound, because anything that might in any way decrease profits was dismissed out of hand as socialist.
posted by ckape at 3:33 PM on March 13 [2 favorites]


So I'm not even sure how it would be possible to stop the cycle without the government stepping in and enforcing.

Well that's an idea!
posted by atoxyl at 4:25 PM on March 13 [4 favorites]


A lot of these companies offer coupons that cover most or all of your copay/coinsurance to encourage you to actually fill your prescription so they can soak your insurance company for the rest. If you have a high copay/coinsurance, ask your doctor, pharmacist, and pharmaceutical company about coupons. Back before there was a generic option, my allergist gave me a $100 off coupon for my EpiPen, which made it completely free to me.

Charging a high list price and then knocking a big chunk off with a coupon for those who bother to seek it out is a pretty standard pricing strategy for a lot of different industries. The idea is to get the full list price from the people who can afford to pay it, but still sell it for a reasonable price to the rest of us.
posted by Jacqueline at 4:59 PM on March 13 [3 favorites]


That bit in Spaceballs when Mel Brooks is huffing canned air comes to mind.
posted by BrotherCaine at 5:03 PM on March 13 [1 favorite]


Here is one resource for those of y'all suffering. (It includes links to specific prescription assistance programs available in certain states, like Texas and Virginia, for example.) My pain point right now is, my company insurance only covers exactly one medication for each chronic condition.

Need two different asthma inhalers? You're fucked.

Was your medication covered last year after your doctor submitted a medically necessary letter? haha, you have to pay for another one this year and they won't tell you! My doc charges $25 per letter. Then sometimes they refuse to cover it anyway. I so enjoy picking up my $250/monthly steroid inhaler now... gee, that's only $3000 extra on top of my $2700 deductible and $3000 insurance premium.

Fully $10,000 of my take-home pay now goes to just two medications and I'm prescribed 5 total.

That said, I do remember when my out-of-pocket costs were $32,000 one year... about 4 years before the ACA passed. I was self-employed and the policy stipulated no "pre-existing condition medication coverage for 7 years after initial onset date of policy." (and I didn't have cancer or anything, either.)

However, the ACA apparently reduced bankruptcy filings in the US by nearly 50%. I'm sure the Trump administration is doing its best to reverse that.
posted by Unicorn on the cob at 6:11 PM on March 13 [8 favorites]


I should mention here that I have employer-provided health insurance, too. I can't imagine what people poorer than me on shitty plans are doing. Dying, most likely, if someone sensible doesn't make Medicare for All happen sooner than later.
posted by Unicorn on the cob at 6:14 PM on March 13 [2 favorites]


Only for certain values of “logical.” Much like gun control works everywhere but the USA, universal healthcare can’t happen here because Reasons.

And these two issues are joined at the hip, since Republicans use gun control for rage votes, receiving support from people who are screwing themselves by voting for these servants of lobbyist.

So, yes, Bubba can keep his AK47, but he'll still have to sell it when he needs that medication for his diabetes.
posted by Beholder at 7:01 PM on March 13


Here's a fun wrinkle: Today we went to my dad's oncologist to see when he can start his next round of chemo. The drug he was given last time, which worked so well for him, is unavailable, currently "on back order due to demand," according to the FDA. According to the oncologist, the drug companies don't want to prioritize making this drug because it is price controlled and they can't make obscene profits off it. So they backlog its manufacture behind all the expensive drugs with which they are bankrupting the people mentioned above. Dad will have to have a different drug combo, which is not the recommended one, for his next round of chemotherapy. Because his treatment, while effective, is not sufficiently profitable.

Pharma companies are like real estate developers who flood the market with super-luxury condos, because building affordable housing would only make them moderately wealthy.
posted by helpthebear at 7:09 PM on March 13 [10 favorites]


It really is quite shocking how large the delta is between the list price of medications and what insurance pays the pharmacy in most cases. Generic Effexor lists at $5-$10 a pill at many pharmacies. Some other psych meds are even more than that.

Thankfully, GoodRx is a thing. I've gotten 70-80% off list with their code before. It's completely insane. I can only imagine the interlocking rebate and discount agreements that must be involved in making it possible given that the pharmacy's markup isn't usually high enough (on its face, not including volume rebates and other back end money) to sell at that great a discount without losing money.

That such a structure can even exist is damning evidence of how terrible our health care system really is.
posted by wierdo at 7:36 PM on March 13


Also, regarding coupons: there are no steroid inhalers FDA approved for kids under 5, so we aren’t eligible for any discounts. We just have to keep shelling out the $250/month. There are no generics. It suuuuucks. It’s a stupid structure.
posted by telepanda at 8:14 PM on March 13


If you've got more than one or two chronic illnesses, you've basically got another full-time job. Between the actual care, the figuring out how you're going to get the care, and all the phone, computer, and paperwork to get the care authorized and covered. You've got to schedule appointments through who knows how many answering machine services from Hell, who may or may not call you back, arrange transport if you're not able to drive, not near public transit, not seeing doctors who are near public transit, or not yet qualified for Paratransit (go back to square 1 for paperwork, phone systems, and unpredictable scheduling).

And there are days in a row when you make it through all those tunnels and over all those hurdles, to see a doctor for about 3 minutes, have him literally shrug, and say, "Oh, it's you again. Have we tried X? Have we tried Y?" *Shrug and huff* "Well, what do you expect ME to do?"

"I... I brought the detailed diary of symptoms you asked for..."

"Yeah, that's no good. I don't know what you thought I was going to do with that. I'll give you some Z, take one a day for three days, three a day for four days, then six a day on an absolutely empty stomach. See me in six weeks."

Receptionist: "I can fit you back in in four months."
posted by The Underpants Monster at 9:50 PM on March 13 [8 favorites]


If you want to get angry, watch episode 3 of dirty money on netflix.

It's all about a drug company named Valeant which made it their business to buy other drug companies and dramatically increase the cost of their drugs. The profits were used to keep on doing more of the same. Shkreli's actions and the epipen pricehike are just the tip of the iceberg.

Obamacare was a step in the right direction, but it was just a small band-aid for a big problem, essentially just formalizing how the ransom money will be paid to wall street. We absolutely have to put a limit on healthcare costs for goods and services but it doesn't even seem to be part of the discussion in this country.
posted by DrumsIntheDeep at 10:11 PM on March 13 [1 favorite]


Lacks condemnation of Illinois Republican Governor (and Pharma Bro wannabe) Bruce Rauner, who increased the price of a drug that corrects heart defects in fetuses, Indocin, from $77 to $1500. He bought up all competing drug patents and then hiked the price of the three-injection treatment from $77 to $1500, on the theory that no parent wants their fetus to die from a preventable heart defect, and therefore he could make millions by charging them $1400 extra dollars for their fetus to survive.

Mr. Rauner claims to be pro-life. Of course.
posted by Eyebrows McGee at 10:21 PM on March 13 [7 favorites]


The underpants monster, I sincerely hope there is some other doctor you can go to, because that clown doesn't deserve to practice medicine.
posted by Kirth Gerson at 5:16 AM on March 14


The underpants monster this is so hilariously exactly my experience I just snorted coffee. Last year I too had a doctor huff "well what do you want me to do?" (Is that a script learned in asshole med class?) A friend went with me to that appointment and asked "Is it always this bad?"

Our experience is the same, right down to the words used, and the 3-4 months to get a second specialist appointment as an established patient.

I too, manage doctors and getting medication as a full-time job, while dealing with a crippling condition and living in fear because I cannot save for the surgeries. The rest of the time is spent trying to get food and figure out a safe, clean place to live on $600 a month, because my disability is being garnished for school loans.

I had the incredible luck to live in Europe one year, and basically I would sell all my possessions: a kidney, an arm, a hand, anything to live and work and pay taxes there forever. I'd row there on a plank, floating up half-drowned if I thought they wouldn't just turn around and send me back.
posted by liminal_shadows at 7:07 AM on March 14 [3 favorites]


Last night, around 1 AM... wait, let me go back a little.

~~~~~~~~~~~~~~~

I was diagnosed last February as diabetic and need injections. When my wife and I moved cross-country (both unemployed, bout to lose our apartment, my parents offered to take us in for a bit), we lost our insurance (Kaiser Permanente under ACA, $350/mo, and a pretty good prescription plan and I found a great doctor). So I had an issue getting my insulin.

I got the genericized stuff from Wal-Mart, which just isn't as good as the stuff I was taking, so my blood sugar, even working hard, has been bouncing around like crazy.

February 1, I got insurance again. Late February, I got a doctor's appointment, then had to cancel because of weather. So last Friday I finally got it again. He checked some stuff, then took all my old prescriptions and re-issued them to my insurance company's home delivery program (so I get my Humalin and Humalog for $70 for a three-month supply, and syringes, and atorvastatin, and lipitor, and all of it - a total of about $200 for a three-month supply).

Yesterday, they all arrived at my home (while I was at work, so my wife took it in, which makes me happy and they weren't stolen from the doorstep). And last night, for the first time since mid-August, I took a shot of Humalog, and at bedtime, a shot of Humulin.

~~~~~~~~~~~~~~~

Last night, around 1 AM, I woke up, a little nauseous and sweating furiously. I recognized this, but still, went to the living room, got my meter, checked my blood glucose, and there it was: 62.

I was overjoyed. Because that meant finally, finally, I had the medications I needed and they were working. (Then I had a couple sugar tablets, waited fifteen minutes, checked again, up to 68, then again up to 74, in the safe zone.)

But I've been scared, and now I'm not. But I have a job that's kinda rewarding but pays not-too-well, but hey, at least I have insurance...

...and that right there, really scares me.
posted by mephron at 7:27 AM on March 14 [3 favorites]


These stories are important in reminding us why things must change. It takes courage to be vulnerable and share struggles, and every one of them makes me feel less alone. Thank you all, and thanks to The Whelk for posting.
posted by liminal_shadows at 9:31 AM on March 14 [3 favorites]


A few months ago I read Elizabeth Rosenthal's An American Sickness where she outlines many issues in the US healthcare system and how it became as dysfunctional as it is. What she has to say about the cost of prescription drugs is interesting and enlightening. She also discusses unexpected hospital and lab bills and what is happening. And the everything but "non-profit" hospitals. Also interesting is the wildly varying charges for the same procedure in the same locale.

I highly recommend the book. She also has a checklist of things to ask your doctor and other medical providers.
posted by Altomentis at 1:29 PM on March 14 [1 favorite]


Charging a high list price and then knocking a big chunk off with a coupon for those who bother to seek it out is a pretty standard pricing strategy for a lot of different industries. The idea is to get the full list price from the people who can afford to pay it, but still sell it for a reasonable price to the rest of us.

I only wish it were that simple. It is so much more complicated than that.

Also, if you keep an eye on the FDA Drug Shortage list, you will see that one way drug companies keep prices high is by discontinuing the lower cost drug/form and putting out a "new" version.
posted by Altomentis at 1:38 PM on March 14



Thanks, kerth gerson. As luck would have it, I did finally get in to see a new specialist in town in that area of medicine. The wait wasn't short, and the staff was average, but the doctor himself was really great. (I told him about the other doctor who wouldn't look at the symptom diary, and he was just as annoyed as I had been.)

Long story short (too late), he thinks there's nothing to be done for one problem but that it won't get worse, and that there's a relatively simple procedure that has a really high chance of helping the other and revolutionizing life as I know it.


So, good results and good treatment are out there. There's just a lot of hard work and a lot of luck of the draw going into finding it, if you do.

And that's not EVEN getting into what a parent without a lot of resources goes through with a chronically-ill child.
posted by The Underpants Monster at 9:04 PM on March 14 [1 favorite]


I work in healthcare, and get the privilege of a high deductible account. I'm lucky that I don't have a child or a significant other on the plan, because then my deductible would be $11,000. As it is, $6k is bad enough.

I'm a nurse practitioner, but 25% of my monthly income goes to my student loan payment, 35+% to medications until I hit the deductible/OOP maximum. One of my damn medications costs >$1000/month. Another one is $250/month. There's a couple more. One of my coworkers, her insulin costs work out to about $1400/month. I work with diabetics and asthmatics, people with kids with chronic health conditions. I see women delay prenatal care so that it can fall into one deductible year, and I don't blame them.

As a millenial with health problems, I don't understand how I'm ever expected to save money, or buy a house. Unless you're somebody like my boyfriend, who grew up with privilege, no student loan debt, and no medical issues. It's hard not to feel [insanely] resentful sometimes.

Those drug discount coupons often don't apply if you have a high-deductible plan, because there's no copay (which is what they're supposed to decrease, typically).

you might do better at a community health clinic (like mine!) because you might be able to get your medication through a 340B participating pharmacy program. We just got a program set up with one, and now a lot of the employees of the clinic are also patients of the clinic so we can get our medications in an almost-affordable way.

/nonlinear morning pre-coffee rant
posted by circle_b at 5:09 AM on March 15 [2 favorites]


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