6 ms·

This guy's condition is tragic, but it's crazy to me that people can read this and come away thinking the insurance companies are the bad guys. Many drugs don'

This guy's condition is tragic, but it's crazy to me that people can read this and come away thinking the insurance companies are the bad guys. Many drugs don't work, they are expensive. If there are no voices in the room saying "we will not pay for expensive drugs that do not work", then healthcare costs will continue spiraling out of control. Single payer healthcare will "solve" this by ensuring that the medications this guy was taking do not exist and are never prescribed in the first place.

davideous 2y ago
Agreed that sometimes it is appropriate for insurance to say no. After one round of physical therapy for tennis elbow, which made some progress but didn't completely clear up the issue, I got denied my insurer (not UHC) for the additional physical therapy that the PT recommended. The problem resolved itself on its own in a month without additional therapy. Seems like they may have been right that it wasn't medically necessary.
maxerickson 2y ago
It seems the insurance company was happy to pay for treatment that wouldn't work though (the approved treatment had already been tried), they denied a treatment that was working.
- mgraczyk 2y ago
  One costs $60/year, the other is over $2M/year and not tested and not widely used outside the US
  - maronato 2y ago
    If the doctor prescribed it, it shouldn’t be the insurance company’s decision to deny it. That’s how it works in most countries. Too bad it’s expensive, but that’s why people pay a lot more than $60/yr for insurance.
    - mgraczyk 2y ago
      No, that's not how it works. Which countries work that way? Where can a doctor prescribe untested drugs and have it paid for?
      - maronato 2y ago
        I’m not sure about any countries that allow untested drugs or treatments for conditions not covered by the insurance company. I’m saying that in many countries, like Brazil, an insurance company can’t deny a treatment for a covered condition because it’s too expensive. So, for example, if the insurance covers prostate cancer, the doctor can prescribe any medically proven prostate cancer treatment and the insurance company can’t say they’ll only pay for a cheaper treatment.
        mgraczyk 2y ago
        Right but that's not what happened in this case. In this case it wasn't "medically proven" in the right sense. I'm not an expert on Brazil but from what I just read these specific drugs would not be covered
      - alp1n3_eth 2y ago
        The US, Canada, England, and most of Europe are beginning to embrace the use of dual biologics in Crohns disease. The FDA approved levels of a singular biological may have issues reigning in out-of-control cases of severe Crohns, and there have been tons of trials run in multiple university hospitals over the last 10 years showing that the dual biological combo can help in those instances. That's exactly why his doctor wanted to do it, because it had worked in the past. This wasn't some insane lab experiment done by a fresh grad gastro doctor.
    - peitho_pls 2y ago
      I'm genuinely curious, what countries work this way? I've never heard of it, every system has some form of rationing as far as I know.
      - 2y ago
  - maxerickson 2y ago
    Wouldn't the dual biologic be at least $120k per year? It's at least $60,000, not $60.
    - mgraczyk 2y ago
      I meant Prednisone is $60/year. I'm not sure that's quite right but it's very cheap, that's roughly my out of pocket cost in the US Just one of the biologics is 500k/year
      - maxerickson 2y ago
        So you are mischaracterizing the biologics then. They are indicated for UC in the US. It's just that the doctor thought that combined, higher doses would work better (and apparently it did). The prednisone still had him shitting blood 20 times a day. Cheap indeed. How do we even have a conversation if you take drugs that are approved for treating a condition and just hand wave that they are "not tested"? https://www.accessdata.fda.gov/drugsatfda_docs/label/2024/761359s000lbl.pdf https://www.accessdata.fda.gov/drugsatfda_docs/label/2024/76... https://www.accessdata.fda.gov/drugsatfda_docs/label/2013/103772s5359lbl.pdf https://www.accessdata.fda.gov/drugsatfda_docs/label/2013/10...
        mgraczyk 2y ago
        The combination has not been tested in a way that could show efficacy, as far as I can tell I'm not against experimenting with new drugs, I just don't think we should force insurers to pay since 99% of the time the experiments will not work We should move toward a pay for performance model but not torch the cost controls while we're at it
        maxerickson 2y ago
        Why not force society (via insurance premiums) to pay for some testing? It's not like combining drugs with different mechanisms is a stupid experiment. The gold standard for testing the combination would be to test it against the standard of care, so it's fairly precious to complain that the doctor and patient here don't have a big enough pool.
  - alp1n3_eth 2y ago
    Remicade and Entyvio have both been heavily tested. Remicade is available in (at least) these countries: - US - Japan - Europe - Turkey - Russia Entyvio: - US - Europe - Canada - Japan - Australia Biologics are the first line of defense for anything over mild IBD. The only effective treatment for above moderate that isn't a combination of other meds is Rinvoq. The small dose items like Azith and Pred are just for flare management, and aren't maintenance medications.
    - mgraczyk 2y ago
      They haven't been heavily tested in combination, and they should be! It just shouldn't be required for insurers to pay for exotic multimillion dollar experiments. There are far better places to be spending that money if the goal is improving healthcare
peitho_pls 2y ago
Agreed. Medicine is one area where desperate people will understandably reach for any measure that offers some hope, but insurers can't be on the hook for everything.
wat10000 2y ago
That must be why all the stories from countries with single payer health care go, “I got my medicine without any hassle or cost” rather than “I didn’t get my medicine and I died.”
- mgraczyk 2y ago
  I don't think there is any country outside the US where a healthcare system would have paid for his untested two biologic combination. Do you have any examples?
not_your_mentat 2y ago
Insurance executive self identified.
- mgraczyk 2y ago
  No, I've just been paying a lot for healthcare and I know where the money goes (not my insurer)
ineptech 2y ago
The point of single payer is to tell doctors and patients unambiguously how much they can spend. The free market puts the insurer(s), the provider(s), and the patient in a competition to see who can stick whom with the bill. The savings come more from not doing that than from the insurer's profit margin.
- mgraczyk 2y ago
  NHS currently does not recommend the treatment that this guy was receiving (as far as I could find): https://eastkentformulary.nhs.uk/media/1868/pr-2022-25-dual-biological-therapy-for-inflammatory-bowel-disease-ibd-in-adults.pdf https://eastkentformulary.nhs.uk/media/1868/pr-2022-25-dual-...
  - alp1n3_eth 2y ago
    The report you linked was from a single healthcare organization in the UK, not the entire NHS. Also, it mainly only covers their own cases and requests, they only treated 7,000 IBD patients in the specified year. It does state that there was a request received, and it would fund it. Dual biologics usually isn't considered until all the regular biologics have been tried by themselves. You don't seem to understand that biologics and surgery are literally the only things to combat this disease, and surgery can end up just being a bandaid: "The only formulary identified with a policy on dual biological therapy for IBD was South-East London which fund dual biologic therapy for severe, refractory CD in certain circumstances."
uhtred 2y ago
Did you read the article? The drugs did work, but only at the high doses prescribed. In fact I am certain you did not read it, as no decent person could read it and say "but it's crazy to me that people can read this and come away thinking the insurance companies are the bad guys."
- mgraczyk 2y ago
  I read it, the drugs may have worked but it's possible that one or both were not necessary, or that some other change caused it. The relevant question is bigger than "did it work", it's "was the likely causal improvement enough to justify the cost" These drug combinations are mostly not approved outside the US because of a lack of data
  - uhtred 2y ago
    All that matters to the patient is that it worked.
    - mgraczyk 2y ago
      Perhaps, but it may not actually work and there are trade-offs. For example if the treatment were $1T we obviously would not do it. How do we allocate resources? Who gets to decide? These questions don't disappear when you change policies, it's just the answers that change
      - uhtred 2y ago
        Why would a treatment ever cost that much? It shouldn't even cost what is does, it's not justifiable.
  - alp1n3_eth 2y ago
    It literally says in the article: "McNaughton had tried individual biologics". This means he most likely had already tried them alone. Remicade especially, as it's essentially been the most popular biologic (aside from humira) for the last 15 years. Do you need to see his full medical history before you have a little empathy? As a person who isn't a gastro doctor I'm sure you'll fully understand it.
alp1n3_eth 2y ago
That's called prescribing off-label, and a lot of moderate to severe IBD patients essentially require it because the recommended dosages (FDA approved) aren't high enough to impact the more severe cases of things like Crohns disease. This decision should be between the doctor and the patient. The Mayo Clinic runs different trials all the time that involve multiple biologics being used at the same time, AKA "off-label" and they can have great results for the individual. Rinvoq + Skyrizi is a newer combo, but it can be any number of them as different patient's disease can affect them more severely through different pathways. If a medication combo is approved by a doctor for a patient, and they've even done the worthless dance that is required to try the drugs they already know aren't going to work, then the patient should be allowed it off-label. Especially so if it's proven to be working (lower c-reactive & calpro levels). Tapering off of prednisone in this situation is a massive success. You literally do not know if a biologic will work for a specific case of IBD until it is tried as each patient is different, at the same time these drugs all passed FDA approval and show stats of 40%+ remission after 12-18 weeks. Also, medication like prednisone can't be prescribed long-term, massive health issues will follow like diabetes and bone density issues (among others highlighted by the article).
- mgraczyk 2y ago
  Yeah they are great drugs, I will probably be on a similar drug soon. And of course the patient should be allowed to take it! It just shouldn't be required that the insurer pay for anything at any price.
  - alp1n3_eth 2y ago
    How would anyone in the US afford a treatment when the system currently supported here inflates prices of these drugs to insane prices? You're defending an inherently corrupt system that leaves the patients in the dark. This isn't supposed to be a market-system, demand is inelastic. They don't have an option to just "go without" life saving medication. Nothing about this is exotic or an experiment. This isn't some doctor who had a crazy idea he wanted to try, these trials have been run all over the place for 10+ years and show a large amount of success in resistant patients. The only reason the drugs cost that much is because of how it's designed in the US. Foreign countries (Europe, Australia, England) pay under $1000 per vial / shot for most of these medications, while one shot of a drug like Stelara is $50,000 in the US. Remicade is even cheaper, usually $500 a vial overseas. The insurance companies want to play this game. They're either in the business of saving lives or they're not, and if they're not, they're actively impeding care to sick individuals. By extension, they are contributing to their deaths if they aren't able to receive the medication they require. In the US, these pharma companies make multiple billions in revenue from one of these drugs, whereas their overseas sales are in the mid to low millions. It's just the game being played in the US, and there's no reason to let someone die over it. Can't believe someone is actually advocating for this guy, who finally after years found a drug combo that worked, to just die. As there's zero way for an average American to afford 1.2 million dollars a year. Insurance is a risk pool, that's what it's there for.

davideous 2y ago

Agreed that sometimes it is appropriate for insurance to say no. After one round of physical therapy for tennis elbow, which made some progress but didn't completely clear up the issue, I got denied my insurer (not UHC) for the additional physical therapy that the PT recommended. The problem resolved itself on its own in a month without additional therapy. Seems like they may have been right that it wasn't medically necessary.

maxerickson 2y ago

It seems the insurance company was happy to pay for treatment that wouldn't work though (the approved treatment had already been tried), they denied a treatment that was working.

mgraczyk 2y ago
One costs $60/year, the other is over $2M/year and not tested and not widely used outside the US
- maronato 2y ago
  If the doctor prescribed it, it shouldn’t be the insurance company’s decision to deny it. That’s how it works in most countries. Too bad it’s expensive, but that’s why people pay a lot more than $60/yr for insurance.
  - mgraczyk 2y ago
    No, that's not how it works. Which countries work that way? Where can a doctor prescribe untested drugs and have it paid for?
    - maronato 2y ago
      I’m not sure about any countries that allow untested drugs or treatments for conditions not covered by the insurance company. I’m saying that in many countries, like Brazil, an insurance company can’t deny a treatment for a covered condition because it’s too expensive. So, for example, if the insurance covers prostate cancer, the doctor can prescribe any medically proven prostate cancer treatment and the insurance company can’t say they’ll only pay for a cheaper treatment.
      - mgraczyk 2y ago
        Right but that's not what happened in this case. In this case it wasn't "medically proven" in the right sense. I'm not an expert on Brazil but from what I just read these specific drugs would not be covered
    - alp1n3_eth 2y ago
      The US, Canada, England, and most of Europe are beginning to embrace the use of dual biologics in Crohns disease. The FDA approved levels of a singular biological may have issues reigning in out-of-control cases of severe Crohns, and there have been tons of trials run in multiple university hospitals over the last 10 years showing that the dual biological combo can help in those instances. That's exactly why his doctor wanted to do it, because it had worked in the past. This wasn't some insane lab experiment done by a fresh grad gastro doctor.
  - peitho_pls 2y ago
    I'm genuinely curious, what countries work this way? I've never heard of it, every system has some form of rationing as far as I know.
    - 2y ago
- maxerickson 2y ago
  Wouldn't the dual biologic be at least $120k per year? It's at least $60,000, not $60.
  - mgraczyk 2y ago
    I meant Prednisone is $60/year. I'm not sure that's quite right but it's very cheap, that's roughly my out of pocket cost in the US Just one of the biologics is 500k/year
    - maxerickson 2y ago
      So you are mischaracterizing the biologics then. They are indicated for UC in the US. It's just that the doctor thought that combined, higher doses would work better (and apparently it did). The prednisone still had him shitting blood 20 times a day. Cheap indeed. How do we even have a conversation if you take drugs that are approved for treating a condition and just hand wave that they are "not tested"? https://www.accessdata.fda.gov/drugsatfda_docs/label/2024/761359s000lbl.pdf https://www.accessdata.fda.gov/drugsatfda_docs/label/2024/76... https://www.accessdata.fda.gov/drugsatfda_docs/label/2013/103772s5359lbl.pdf https://www.accessdata.fda.gov/drugsatfda_docs/label/2013/10...
      - mgraczyk 2y ago
        The combination has not been tested in a way that could show efficacy, as far as I can tell I'm not against experimenting with new drugs, I just don't think we should force insurers to pay since 99% of the time the experiments will not work We should move toward a pay for performance model but not torch the cost controls while we're at it
        maxerickson 2y ago
        Why not force society (via insurance premiums) to pay for some testing? It's not like combining drugs with different mechanisms is a stupid experiment. The gold standard for testing the combination would be to test it against the standard of care, so it's fairly precious to complain that the doctor and patient here don't have a big enough pool.
- alp1n3_eth 2y ago
  Remicade and Entyvio have both been heavily tested. Remicade is available in (at least) these countries: - US - Japan - Europe - Turkey - Russia Entyvio: - US - Europe - Canada - Japan - Australia Biologics are the first line of defense for anything over mild IBD. The only effective treatment for above moderate that isn't a combination of other meds is Rinvoq. The small dose items like Azith and Pred are just for flare management, and aren't maintenance medications.
  - mgraczyk 2y ago
    They haven't been heavily tested in combination, and they should be! It just shouldn't be required for insurers to pay for exotic multimillion dollar experiments. There are far better places to be spending that money if the goal is improving healthcare

peitho_pls 2y ago

Agreed. Medicine is one area where desperate people will understandably reach for any measure that offers some hope, but insurers can't be on the hook for everything.

wat10000 2y ago

That must be why all the stories from countries with single payer health care go, “I got my medicine without any hassle or cost” rather than “I didn’t get my medicine and I died.”

mgraczyk 2y ago
I don't think there is any country outside the US where a healthcare system would have paid for his untested two biologic combination. Do you have any examples?

not_your_mentat 2y ago

Insurance executive self identified.

mgraczyk 2y ago
No, I've just been paying a lot for healthcare and I know where the money goes (not my insurer)

ineptech 2y ago

The point of single payer is to tell doctors and patients unambiguously how much they can spend. The free market puts the insurer(s), the provider(s), and the patient in a competition to see who can stick whom with the bill. The savings come more from not doing that than from the insurer's profit margin.

mgraczyk 2y ago
NHS currently does not recommend the treatment that this guy was receiving (as far as I could find): https://eastkentformulary.nhs.uk/media/1868/pr-2022-25-dual-biological-therapy-for-inflammatory-bowel-disease-ibd-in-adults.pdf https://eastkentformulary.nhs.uk/media/1868/pr-2022-25-dual-...
- alp1n3_eth 2y ago
  The report you linked was from a single healthcare organization in the UK, not the entire NHS. Also, it mainly only covers their own cases and requests, they only treated 7,000 IBD patients in the specified year. It does state that there was a request received, and it would fund it. Dual biologics usually isn't considered until all the regular biologics have been tried by themselves. You don't seem to understand that biologics and surgery are literally the only things to combat this disease, and surgery can end up just being a bandaid: "The only formulary identified with a policy on dual biological therapy for IBD was South-East London which fund dual biologic therapy for severe, refractory CD in certain circumstances."

uhtred 2y ago

Did you read the article? The drugs did work, but only at the high doses prescribed. In fact I am certain you did not read it, as no decent person could read it and say "but it's crazy to me that people can read this and come away thinking the insurance companies are the bad guys."

mgraczyk 2y ago
I read it, the drugs may have worked but it's possible that one or both were not necessary, or that some other change caused it. The relevant question is bigger than "did it work", it's "was the likely causal improvement enough to justify the cost" These drug combinations are mostly not approved outside the US because of a lack of data
- uhtred 2y ago
  All that matters to the patient is that it worked.
  - mgraczyk 2y ago
    Perhaps, but it may not actually work and there are trade-offs. For example if the treatment were $1T we obviously would not do it. How do we allocate resources? Who gets to decide? These questions don't disappear when you change policies, it's just the answers that change
    - uhtred 2y ago
      Why would a treatment ever cost that much? It shouldn't even cost what is does, it's not justifiable.
- alp1n3_eth 2y ago
  It literally says in the article: "McNaughton had tried individual biologics". This means he most likely had already tried them alone. Remicade especially, as it's essentially been the most popular biologic (aside from humira) for the last 15 years. Do you need to see his full medical history before you have a little empathy? As a person who isn't a gastro doctor I'm sure you'll fully understand it.

alp1n3_eth 2y ago

That's called prescribing off-label, and a lot of moderate to severe IBD patients essentially require it because the recommended dosages (FDA approved) aren't high enough to impact the more severe cases of things like Crohns disease. This decision should be between the doctor and the patient. The Mayo Clinic runs different trials all the time that involve multiple biologics being used at the same time, AKA "off-label" and they can have great results for the individual. Rinvoq + Skyrizi is a newer combo, but it can be any number of them as different patient's disease can affect them more severely through different pathways. If a medication combo is approved by a doctor for a patient, and they've even done the worthless dance that is required to try the drugs they already know aren't going to work, then the patient should be allowed it off-label. Especially so if it's proven to be working (lower c-reactive & calpro levels). Tapering off of prednisone in this situation is a massive success. You literally do not know if a biologic will work for a specific case of IBD until it is tried as each patient is different, at the same time these drugs all passed FDA approval and show stats of 40%+ remission after 12-18 weeks. Also, medication like prednisone can't be prescribed long-term, massive health issues will follow like diabetes and bone density issues (among others highlighted by the article).

mgraczyk 2y ago
Yeah they are great drugs, I will probably be on a similar drug soon. And of course the patient should be allowed to take it! It just shouldn't be required that the insurer pay for anything at any price.
- alp1n3_eth 2y ago
  How would anyone in the US afford a treatment when the system currently supported here inflates prices of these drugs to insane prices? You're defending an inherently corrupt system that leaves the patients in the dark. This isn't supposed to be a market-system, demand is inelastic. They don't have an option to just "go without" life saving medication. Nothing about this is exotic or an experiment. This isn't some doctor who had a crazy idea he wanted to try, these trials have been run all over the place for 10+ years and show a large amount of success in resistant patients. The only reason the drugs cost that much is because of how it's designed in the US. Foreign countries (Europe, Australia, England) pay under $1000 per vial / shot for most of these medications, while one shot of a drug like Stelara is $50,000 in the US. Remicade is even cheaper, usually $500 a vial overseas. The insurance companies want to play this game. They're either in the business of saving lives or they're not, and if they're not, they're actively impeding care to sick individuals. By extension, they are contributing to their deaths if they aren't able to receive the medication they require. In the US, these pharma companies make multiple billions in revenue from one of these drugs, whereas their overseas sales are in the mid to low millions. It's just the game being played in the US, and there's no reason to let someone die over it. Can't believe someone is actually advocating for this guy, who finally after years found a drug combo that worked, to just die. As there's zero way for an average American to afford 1.2 million dollars a year. Insurance is a risk pool, that's what it's there for.