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Pretty much the same thing happened to my dad. He was diagnosed with a rare type of blood cancer. The insurance company denied monoclonal antibodies (as recommended by his oncologist) and would only pay for a complete bone marrow transplant, which would have been highly traumatic at his age. All based on a "standard of care" that at that point was 15 years old... and which was originally written by a committee chaired by my dad's oncologist (who presumably knows something about the best way to treat this condition in 2022.)
They didn't reverse the decision until we got a lawyer who knew the ins and outs of the appeals process. Thankfully, we were able to work through that fast enough for treatment to be effective... there's no way we could have paid out of pocket.
The ability of an insurance company to unilaterally deny treatment, or determine what type of treatment a patient receives, is obscene and should be categorically illegal. There is no instance in which a medical bureaucrat should should be able to, sight-unseen, overrule a patient's own doctor.
It's so frustrating.
THIS!!
Similar for a close family member with a strange heart and immune condition.
InsuranceCo BCBS had some bureaucrat without even a medical degree directly second-guessing the tests ordered by the literal Director of Cardiology at the world-renowned Mayo Clinic.
All I can think is: "Who the fck are you to even begin to question this expert, and deny his recommendation?". Now, IFF they had some actual peer reviewing it (e.g., the head of cardiology at Cleveland Clinic or Harvard Med School), that might be legit, but this is nothing of the sort. It's like the tech giant's arbitrary terminating accounts with support, except instead of cutting off your livelihood, they are killing you.
It is the death of expertise. It seems like practicing medicine without a license and without even seeing the patient (which is legally required before writing many prescriptions).
Why it is even close to legal is utterly baffling.
(I hope your dad continues to recover)
When Americans style healthcare promoters toss around arguments like “doctors in public healthcare are deciding if treating you is worth it”… I love replying with “at least in public healthcare the doctors get to decide, with only private health insurance paid for by insurance companies, it’s a faceless claims adjuster with zero medical experience who isn’t even deciding as much as they are just telling you that treating you properly would cost the company too much money… I’ll take my chances with a death panel of doctors over the death panel of accountants any day of my entire life”
I think American healthcare is insane… and the slow sliding in the American style healthcare direction I see in the UK and even slower slide here in Australia, this slide is largely borne out of American healthcare business having no more room to expand and trying to export their business model overseas to expand their addressable markets… it’s insane to allow non medical professionals… to allow armies of accountants and actuaries… to decide how to treat patients.
It should be criminal, but it won’t be because the healthcare industry in America is so broken it will lobby till it’s broke to continue to be allowed to remain broken otherwise it might not be as profitable.
> I love replying with “at least in public healthcare the doctors get to decide, with only private health insurance paid for by insurance companies, it’s a faceless claims adjuster with zero medical experience who isn’t even deciding as much as they are just telling you that treating you properly would cost the company too much money… I’ll take my chances with a death panel of doctors over the death panel of accountants any day of my entire life”
I think a licensed doctor/pharmacist employed by the insurance company has to make the decision, although, since they do not have liability exposure, I can imagine metrics can be imposed on them that make the quality of their work less than desirable.
And even if you are refused treatment you can always pay out of pocket if you really want to.
It's ironic that certain people claim that socialized medicine results in "death panels" that decide who lives and who dies. Turns out we already have them, in the form of for-profit corporations that have strong incentives to deny treatment.
> The ability of an insurance company to unilaterally deny treatment, or determine what type of treatment a patient receives, is obscene and should be categorically illegal.
I emotionally agree with this, but I don't have a good answer for the following situation:
1) A company develops a new, slightly more efficacious treatment, patents it, and prices it at some completely absurd cost (say, $1 million/month for daily pills).
2) Doctors understandably prescribe this treatment because it's slightly more efficacious than the pills that cost $16/month.
Where would pricing pressure come into play here? If insurance companies can't say "No, that price is ridiculous and we're not paying it." I'm honestly wondering what the solution for this would be.
Don't run your healthcare as a for-profit system.
even a non-profit system has to control costs.
Does co-insurance help with this problem? e.g. if the patient is responsible for 10% of the cost of the pills, then the patient is motivated to choose the cheaper pills without the need for a long bureaucratic process with the insurance company, and the doctor just has to present both options
Healthcare costs for advanced procedures and medicine and equipment are so high that the amount 90% of people can afford to pay is inconsequential to the whole cost, hence the use of insurance companies (which are not just selling insurance, but acting as the healthcare recipient’s agent in negotiating prices and appropriate levels of healthcare, ideally). Obviously, the reality leaves much to be desired.
But that is the purpose of high deductible health plans, to give healthcare recipients an incentive to to visit cheaper healthcare providers or accept generic medicines.
> The ability of an insurance company to unilaterally deny treatment, or determine what type of treatment a patient receives
Technically, the insurance company is denying payment, not the treatment. Also, many times, the prior authorization requirements and formularies are given by the insurance company’s customer, such as the the government (Medicaid, Medicare, employer, etc). But the insurance company will take the heat, because that is part of what they are getting paid for.
Useful for when you need to give a Senator quick access to top tier healthcare, and older people a lower level of healthcare, and poorer people an even lower level of healthcare.
> Technically, the insurance company is denying payment, not the treatment.
For almost every person in this country, for an expensive treatment, this is a distinction without any difference whatsoever.
My point was the insurance company might be taking the heat for denying payment for the claim. For example, the lawyer in the article was 67 years old, and presumably had a Medicare plan sold by BlueCross BlueShield Louisiana (BCBSLA).
Was it BCBSLA that chooses to use Elevance for reviewing claims and the guidelines for those claims? Or does the federal government dictate using Elevance? And are there varying federal government standards for different insured populations?
I have not researched it thoroughly, but I can envision a situation where BCBSLA sells the government a “fall guy” role, and the government (taxpayers) save money by telling BCBSLA to use a more restrictive formulary or prior authorization criteria for certain populations.
unfortunately, I don't think any country in the world has a system where bureaucrats don't have to make decisions about which treatments will and won't be paid for.
I'm sorry to hear you had to deal with that.
My Mum was diagnosed with Stage 4 lung cancer, and they went all out with radiation, chemo, experimental new treatments and a TON of tests and scans. They estimated she had 12 months to live, she made it just under three years and had basically every treatment and scan even conceived to fight cancer.
Money or insurance were never even discussed or mentioned once. It's simply not part of our world.
The US can do better.
I can really empathize with this. My wife fought two brain tumors and was repeatedly denied treatment to the tune of tens of thousands of dollars. Can you imagine going through radiation therapy, chemo, and all kinds of different tests and having extra financial stress dumped on you?
I'm honestly surprised there aren't more cases of violence against Insurance companies and employees.
Why shouldn't insurance companies offer cheaper plans that don't include state of the art treatments?
Not everyone wants to pay top dollar for the most comprehensive gold-plated plans.
So you want to pay $450 rather than $500 a month and in exchange when you get cancer they tell you to just go die rather than getting the treatment your doctor prescribes that could save you? Isn't the whole point of insurance covering that type of situation?
> Isn't the whole point of insurance covering that type of situation?
it is, but i imagine the insurance company is expecting a certain cost for some expected treatments, and use that to calculate your life-time value as a customer. If a new treatment that has better outcomes, but is more expensive comes along, the insurance company may stand to lose money, and thus, they prefer denying such a treatment and only offer the "old" one.
At least, that is how i would rationalize the behaviour. Whether this is actually the reason or not, remains to be seen.
Huh? I'm not currently planning to purchase health insurance in the US. Are you confused about my comment?
insurance is fundamentally a market of lemons if you allow price discrimination.
For what reasons?
I remember the mention of "Death Panels" that were claimed would appear if there was federal insurance. I'm not sure, but isn't that what's happening today as is?
> but isn't that what's happening today as is?
Yes.
The difference is how much choice you have for your death panel.
I think "death panels" were a propaganda thing unique to the USA.
They don't actually exist anywhere (else) afaik.
The medical industry cartels didn't spring up overnight. This was happening then, too. There is a common pattern of political propaganda that starts by labeling its opposition with terms that would be more appropriate for what it's pushing, cutting off the obvious criticism. For what should be a non-US-partisan example: see Russia calling Ukraine "Nazis".
Kind of demoralizing story (but a good read). Even a renowned litigator with the right friends and plenty of money was only able to secure (potentially partial) payment for the treatment? The system doesn't even allow for damages?
Almost made me even more frustrated. I was hoping they'd have to pay up big time, or that some legal precedent would be set in his victory that would help millions in the future avoid this mess.
Also title could use a 'treatment' added to it.
>and plenty of money was only able to secure (potentially partial) payment for the treatment?
They did not even receive a partial payment yet, though, 5 years after the event.
>The case itself remains open. The judges ruled that Blue Cross must pay for Salim’s treatment. But they did not say how much.
>Salim is expecting the full $95,862.95 he paid. However, court records show that Blue Cross has said it only needs to pay Salim the discounted rate it had negotiated with MD Anderson at the time of his radiation treatment: $35,170.47. That’s what Blue Cross would have paid if its doctors had said yes in the first place.
>A decision is expected later this year.
Shows you how much you should depend on the courts if you are not already rich.
Didn't expect to see Skeeter Salim on Hacker News. Like, ever, much less in this context.
Trial attorneys have a very peculiar reputation in Louisiana. They get incredibly wealthy on the backs of lawsuits against the state's oil and gas businesses and their insurers, then turn that money into political lobbying power. This creates a populist dynamic where trial attorneys try to rally voters to oppose tort reform laws in the legislature that are often backed by insurance companies.
For instance, in the Louisiana gubernatorial election, where Salim shows up in this article: https://www.nola.com/news/politics/jeff-landry-is-collecting...
Good. We don’t need tort reform we need more lawsuits against bad companies.
"Tort reform" is a euphemism for "everything must be secondary to shareholder value, even to the extent of making it impossible to punish egregious violations of the law".
Here is the fun part that most people don't know...universal healthcare systems wouldn't have paid for this either.
However, the patient never would known about it because it wouldn't have been on the list of "approved therapies", so the doctor never would have suggested it.
The article dances around it, but for this particular cancer, proton beam therapy has little evidence supporting it. The current treatment guidelines like NCCN list a number of evidence-based therapies for first line, second line and subsequent line treatments. Proton beam thereapy is a "hail mary" and universal healthcare systems are less expensive than the US because they don't pay for "hail marys".
So in places like Canada (whose patients, it's important to note, need to travel to the US because there are no proton beam centers) the doctor wouldn't have even considered it as a treatment option in this case.
Are you sure? It seems like many countries in Europe have facilities for proton beam therapy, including countries with universal health care (which IIRC is all of them?). [1] Canada happens to not have one yet, but the question is under study. [2]
What concerns me is "This rapid growth in the number of proton beam therapy centres, [...] is viewed with concern by advocates of evidence-based medicine. " [1]
It seems like Proton beam therapy is still -as yet- somewhat controversial.
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6474264/
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8130814/#:~:tex...
Your comment doesn't seem consistent, so I'm not sure if it's just disorganized or actually false.
You state that non-US healthcare "wouldn't have paid for this either", but later you mention "need to travel to the US because there are no [PB] centers" (which is true). But then you continue "the doctor wouldn't have even considered it as a treatment option".
Now, I'm not an expert at PB treatment, but the fact that patients have to travel would suggest that at least some do that; I'm not sure if the treatment is partially or fully covered. But a quick Google seems to suggest that this option is known, and that there is lobbying to create such a center in Canada; and they acknowledge that the treatment, lasting 6-8 weeks in a distant city can be challenging.
But if it isn't an option considered or offered, why bother to build something with no demand?
> But if it isn't an option considered or offered, why bother to build something with no demand?
I said "in the case of the patient in the article".
Proton beam therapy is in the clinical guidelines, just not first line for throat cancer (or at least not right now, maybe future evidence will prove otherwise).
This is a valid point about gating of medical procedure access, but more an argument for exception processes and cost reductions to allow off label attempts at treatment.
I see the price of proton therapy varies wildly between thousand and tens of thousands of dollars per treatment. Still too high. Perhaps if the cost were lower and some streamlined review process existed, it would be less of a lift to say “hop on the table while the accelerator spins up, won’t be expensive if this doesn’t work.” (in this example) Rationing human supply (labor) makes sense, making humans takes time and supply is constrained. Other costs can be ruthlessly driven down (with some combination of manufacturing learning, research, etc). Consider the costs of Western disease (obesity) and bariatric surgery with recent developments in semaglutide, for example.
On what basis are you claiming that the cost of proton beam therapy is too high? How do we calculate the correct price? Newer medical devices will always be expensive due to the high costs of R&D plus obtaining FDA approval.
My urologist in Canada recommended a procedure that universal healthcare doesn’t cover. I paid out of pocket at the clinic where he does these procedures. I’m glad I got it.
Inspiring! Orphan's knowledge of legal system saves them from orphan crushing machine.
Honestly, a really good story well written. Should be read by more people. It's really quite strange how opaque most of these processes are. How they are handled and documented is also quite nuts.
Strange? More like inevitable given the incentives involved.
I like the part where everyone forgot that humans are more important than money.
"don't get cancer unless you're a lawyer"
US nonsense only. In democratic countries I never heard of such shenanigans. Some costly treatments are denied, yes, but not in such clear cases.