Cancer patients are being denied drugs, even with prescriptions and insurance • Hacker News Board

Re: Cancer patients are being denied drugs, even with prescriptions and insurance

#81

Post by DanBC » Sat, Aug 03, 2019, 6:56 PM UTC

IanDrake wrote: post #62

taneq wrote: post #44

Earlier quoted context omitted.

The rational, informed decision is that the government should run its own medical R&D. But no, we can't do that because muh freedums.

Examples of prodects created by government run medical R&D?

A pop-sci list: https://www.med-technews.com/features/the-nhs-at-70-inventio...

1949: Intra-occular lens

1958: ultrasound for obstetrics

1962: total hip replacement

1978: test tube baby

1986: combined heart, liver, lung transplant

1991: robotic surgery

2000: gene therapy for children with no immune system

2013: bionic hand

There are lots more.

Re: Cancer patients are being denied drugs, even with prescriptions and insurance

#82

Post by Scoundreller » Sat, Aug 03, 2019, 6:57 PM UTC

sorokod wrote: post #37

DanBC wrote: post #16

Earlier quoted context omitted.

Something similar used to happen here with NICE guidance not recommending use of the meds, which is why the cancer drugs fund was set up. After spending a billion or so on meds we found out that they mostly don't increase length of life and also cause nasty side effects. https://www.bmj.com/content/357/bmj.j2097

Can you explain in a bit more detail how NICE guidelines are similar to what is described in the article?

UK has a set of standard guidelines for how to treat diseases with proven drugs, and only pays for those (like the insurance company in the article being rigid about its guidelines).

People complained that their doctors weren't allowed to go off-track and make up special treatments for their special patients that went against guidelines (like the patients in the article).

Because it's political suicide to deny "What the doctor thinks is the best" when it comes to dying cancer patients, the UK government set up a special fund of money to let doctors go against the guidelines. It accounted for ~1/6th of all cancer drug costs.

It turns out that this special fund was largely a waste of money, the guidelines were fine all along, and patients were harmed by getting treatments that don't work.

Despite having our hearts in the right places, patients were harmed, and funds were taken out of some other (proven) part of the health care system. But because we tried to help, we won't bring this up very often.

Re: Cancer patients are being denied drugs, even with prescriptions and insurance

#83

Post by 4ntonius8lock » Sat, Aug 03, 2019, 6:58 PM UTC

The fact that you need a prescription at all for many of these drugs is crazy.

I don't agree with drug laws related to addictive substances. But at least they make sense. Even laws related to antibiotics. There's potential for abuse, so the controllers at least have a logical (if not reasonable) argument.

But what possible purpose does it serve to require a prescription for insulin? Or chemo drugs which have no pleasant effect?

The blatant racket isn't even questioned when things like this happen.

We should be lobbying to remove the need for prescriptions from most drugs and to remove liability for drug sales from pharmacies and other third parties. This way, they don't have a say. And they shouldn't.

America is a place where the 0.1% probability there is a negative reaction means 25% of the population can't access medications. And they have the chutzpah to say it's for our own benefit. Legislative capture at it's worst.

Re: Cancer patients are being denied drugs, even with prescriptions and insurance

#84

Post by ta0987 » Sat, Aug 03, 2019, 7:00 PM UTC

Scoundreller wrote: post #67

tasty_freeze wrote: post #36

One entirely maddening thing is that the ACA was labeled as having "death panels" that would decide who lives and dies. That phrase was powerfully effective in making large group of Americans strongly oppose the ACA. Even if they knew nothing else about the ACA, they knew they didn't want death panels. But as this article demonstrates, if we care to use the inflammatory "death panels" label, we already have them. It…

Canadian here. We also have decision makers that decide what gets covered or not. It's stupid not to. We shouldn't plunder health care funds on $1m per year of life saved interventions when you can spend that on 100 interventions costing $10k per year of life saved. It works pretty well (something like 15th longest life expectancy). Of course, you're always free to pony up your own cash to pay for a treatment that is…

Logically, yes...

But an acquaintance with Canadian relatives told me he knows a middle aged single man that was denied a knee replacement he needed because of these trade-offs. Left with decades to live, partially disabled, because: "Old? No family? Well fuck that guy then."

Re: Cancer patients are being denied drugs, even with prescriptions and insurance

#85

Post by jahewson » Sat, Aug 03, 2019, 7:01 PM UTC

cheeky78 wrote: post #46

tasty_freeze wrote: post #36

One entirely maddening thing is that the ACA was labeled as having "death panels" that would decide who lives and dies. That phrase was powerfully effective in making large group of Americans strongly oppose the ACA. Even if they knew nothing else about the ACA, they knew they didn't want death panels. But as this article demonstrates, if we care to use the inflammatory "death panels" label, we already have them. It…

"But as this article demonstrates, if we care to use the inflammatory "death panels" label, we already have them." It's not inflammatory when it's true. When the government runs our healthcare, choices are removed and someone else gets to decide if you should get surgery needed or not...and many times this is life or death. At least now, if a cancer patient gets denied drugs, they can go to another doctor or get a se…

> At least now, if a cancer patient gets denied drugs, they can go to another doctor or get a second opinion.

This is not true; if your insurance company will not cover a specific drug then going to another doctor will make no difference. And you can’t go to another insurance company outside of open enrolment - assuming your employer even offers plans from more than one insurer.

Re: Cancer patients are being denied drugs, even with prescriptions and insurance

#86

Post by RandomTisk » Sat, Aug 03, 2019, 7:03 PM UTC

threezero wrote: post #57

cheeky78 wrote: post #46

Earlier quoted context omitted.

"But as this article demonstrates, if we care to use the inflammatory "death panels" label, we already have them." It's not inflammatory when it's true. When the government runs our healthcare, choices are removed and someone else gets to decide if you should get surgery needed or not...and many times this is life or death. At least now, if a cancer patient gets denied drugs, they can go to another doctor or get a se…

Your anecdotes aside, the vast majority of Canadians approve of their healthcare system, something you can’t say about the US.

Which the ACA has made decidedly worse for nearly everyone. The costs have gone though the roof and since at least 2014 or so, I can only get high deductible plans though my employers.

Re: Cancer patients are being denied drugs, even with prescriptions and insurance

#87

Post by sorokod » Sat, Aug 03, 2019, 7:06 PM UTC

Scoundreller wrote: post #82

sorokod wrote: post #37

Earlier quoted context omitted.

Can you explain in a bit more detail how NICE guidelines are similar to what is described in the article?

UK has a set of standard guidelines for how to treat diseases with proven drugs, and only pays for those (like the insurance company in the article being rigid about its guidelines). People complained that their doctors weren't allowed to go off-track and make up special treatments for their special patients that went against guidelines (like the patients in the article). Because it's political suicide to deny "What…

And this relates to the article how?

Ultimate, what is described is an insurer tying to minimize the payout on a claim same as they have been doing from the dawn of time except here it's particularly nasty as people suffer and die.

Re: Cancer patients are being denied drugs, even with prescriptions and insurance

#88

Post by refurb » Sat, Aug 03, 2019, 7:07 PM UTC

darkerside wrote: post #39

refurb wrote: post #24

This is nothing new and is the process by which insurance companies reduce drug costs. Insurers come up with formularies that favor less expensive drugs first. If those don’t work, the patient can get the more expensive drugs. Manufacturers negotiate formulary agreements. They might offer a rebate to move their product to first line use. In therapeutic areas like psoriasis, the rebates can exceed 50% since it’s such…

What's new is the application of step therapy to cancer care. Per the article, this was introduced into Medicare by HHS under the Trump administration.

That’s true, cancer was generally unmanaged in the past.

However, some control is needed. I was talking to an insurer once and he mentioned a doctor who had prescribed a drug for patient where there was no evidence it worked. When he asked the doctor why, he said “well I have to give them something”. This was a $10,000 per month drug.

Re: Cancer patients are being denied drugs, even with prescriptions and insurance

#89

Post by DanBC » Sat, Aug 03, 2019, 7:09 PM UTC

Scoundreller wrote: post #67

tasty_freeze wrote: post #36

One entirely maddening thing is that the ACA was labeled as having "death panels" that would decide who lives and dies. That phrase was powerfully effective in making large group of Americans strongly oppose the ACA. Even if they knew nothing else about the ACA, they knew they didn't want death panels. But as this article demonstrates, if we care to use the inflammatory "death panels" label, we already have them. It…

Canadian here. We also have decision makers that decide what gets covered or not. It's stupid not to. We shouldn't plunder health care funds on $1m per year of life saved interventions when you can spend that on 100 interventions costing $10k per year of life saved. It works pretty well (something like 15th longest life expectancy). Of course, you're always free to pony up your own cash to pay for a treatment that is…

> We shouldn't plunder health care funds on $1m per year of life saved interventions

And we especially shouldn't spend huge amounts of money on meds that don't extend life (or even shorten it), and that worsen quality of life.

Re: Cancer patients are being denied drugs, even with prescriptions and insurance

#90

Post by hestipod » Sat, Aug 03, 2019, 7:10 PM UTC

NotSammyHagar wrote: post #80

cheeky78 wrote: post #46

Earlier quoted context omitted.

"But as this article demonstrates, if we care to use the inflammatory "death panels" label, we already have them." It's not inflammatory when it's true. When the government runs our healthcare, choices are removed and someone else gets to decide if you should get surgery needed or not...and many times this is life or death. At least now, if a cancer patient gets denied drugs, they can go to another doctor or get a se…

At best this is an uncommon opinion. I work with a dual citizen republican from Canada. He was almost swayed to your view until he actually used the us health system. We have good us Corp healthcare, & now he says it's similar to ca. He was wondering what would happen if he got hurt and lost coverage in the us.

I can tell him exactly what happens. You are priced out of the "privilege" of healthcare.

You try to make do. Manage as you can with your savings, work you can get and maintain, as the effects of the medical issue continue to limit every aspect of your life and get worse with age and time. The normal decline of age is amplified as a result and your options to earn are further restricted. Eventually there is no way to do it alone or without some outside help.

You are directed to apply for programs that are also "privileges" and not available to everyone as the process is adversarial and not a right. You face many levels and months to years of denials, appeals, and are often completely rejected.Even if you get approved you are mired in bureaucracy, reapprovals, judgement, and your access is extremely limited even in the best case.

Next people you talk to about this will begin to marginalize you and act as if you must have done something wrong because they just cannot believe it's like that. In order to maintain their just-world hypothesis and feelings of security they need to frame this as an individual failure or anomaly and not a systemic and cultural defect.

You then start to get depressed and lose hope because there is no way to regain your quality of life or even obtain a survivable one in many cases. If you are fortunate enough to have caring family you might find some support and have some livable life, even if restricted. If you do not then you end up with more needs and expenses but with the exact opposite situation in resources. Eventually you decide to take a walk off a bridge because there is no real way out.

This isn't even the worst case scenario but rather a fairly median process because needs go up with age and resources decline so without having the time to build a safety net over a lifetime, or a social one being present...you have no options. This is happening to thousands of people right now. I am one of them. I've never met anyone like this who chose it or wanted it. I've never met anyone like this who wants to "sit on their ass and take my tax money" as people in my region assert. Every one of them is someone who had a life, who would love nothing more than independence, but for whom it isn't on the menu and neither is enough assistance to have any quality of life.