[HN Gopher] A cancer trial's unexpected result: Remission in eve...
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A cancer trial's unexpected result: Remission in every patient
Author : mhb
Score : 333 points
Date : 2022-06-05 13:13 UTC (9 hours ago)
(HTM) web link (www.nytimes.com)
(TXT) w3m dump (www.nytimes.com)
| js4ever wrote:
| https://archive.is/eSDiX
| Gordonjcp wrote:
| I'm not sure which immunotherapy drug my mother has been
| receiving, but after being diagnosed with lung cancer nearly two
| years ago - a tumour roughly the size of a tangerine right in the
| top corner of one lung, utterly inaccessible by surgery, in
| absolutely the wrong place to attempt radiotherapy - it's now
| gone, save for a little bit of scarring and fibrosis where it
| used to be. The treatment has left her tired and brain-foggy but
| that's pretty small potatoes to being a chemo zombie, which she
| absolutely did not want. Although she's in her early 80s she's
| otherwise in not too bad shape, so that probably helped.
|
| From here on out, it'll be scans every three months or so to make
| sure it hasn't come back, but her doctor says that if it does
| come back it'll grow so slowly and weakly that it's just not
| going to be worth bothering with.
|
| I expect you can imagine the look on Mum's doctor's face when we
| went in for the most recent scan results - it can't be often an
| oncologist gets to give someone the best news in the world.
| greedo wrote:
| As a survivor of colorectal cancer, this is great news, even
| though the sample size is small and further studies are obviously
| needed. I'm hoping that by the time my children are at an age
| where they're at risk, treatments like this will be a well-
| established standard of care.
| hprotagonist wrote:
| relatedly, the only good reason to stop a trial early is that it
| becomes unethical not to treat the control group because the
| effect size in the treatment group is so huge. And it does
| happen, sometimes.
| gumby wrote:
| The other reason is futility: the treatment has no benefit or
| any improvement is grossly outweighed by side effects.
| civilized wrote:
| I sometimes wonder if the exhilaration of such a result comes
| with a twinge of regret that the result could not have been
| foreseen before the science reached it, and more people given
| the lifesaving treatment immediately.
|
| But that is the human condition, I guess. Scientific progress
| and learning brings regrets, often very momentous ones in
| retrospect.
| carapace wrote:
| Regret, sure, but since we can't change the past that regret
| should motivate us to work harder to make the present and
| future better. We're a young species, and part of growing up
| is looking back with chagrin at how foolish we seem in the
| light of our new growth and learning.
| chrisbrandow wrote:
| While I totally get what you mean, I'd guess for scientists,
| the answer is generally, "no". Expected outcomes for trials
| like this are a whole lot less certain to the people doing
| the work, that than it seems on the outside, so i think it
| wouldn't even occur to the scientists that the downside of
| "withholding" treatment from the tiny (relative to the
| population) control group comes close to the upside.
| civilized wrote:
| Yeah, it's just a wistful thing, and most of us laymen
| don't even experience the part where you want to know
| something but don't know it yet.
| aperson_hello wrote:
| The number of trials that don't work in humans when it worked
| in every pre-clinical trial up to that point is enough that
| it makes sense to be extra cautious.
| qgin wrote:
| It's true, but there's no alternative. 99% of things don't
| work.
| hprotagonist wrote:
| generally speaking, "holy shit it _worked?!!!_ " drowns out a
| lot. It's not so much exhilaration as it is a kind of
| astonished joy.
| orblivion wrote:
| I mean, treat everybody in the world with that condition at
| that point, right?
| thematrixturtle wrote:
| The treatment costs ~$100k over half a year.
| sircastor wrote:
| If this is as effective and reliable as is suggested, this
| the expense is a cost saving effort. Cancer is an
| exceptionally expensive disease, at least in the US.
| fisf wrote:
| That's peanuts in the context of cancer treatment.
| [deleted]
| Aransentin wrote:
| Some napkin math: Given rectal cancer's rate of survival of 67%,
| and the small size of the study (18 people), you should see
| similar results due to random chance every 1350th study.
|
| A cursory search on clinicaltrials.gov and I can find 7131 cancer
| studies started in 2021 alone. It's therefore not unreasonable
| for this one to be just a random fluke.
| wonnage wrote:
| Other commenters have done a fine job expressing why this
| napkin math is silly and perhaps in isolated cases this is a
| good thing, OP probably learned something here
|
| But in aggregate these sorts of comments are annoying as hell
| on every medical article posted to HN. Now you have to hope a
| sufficient mass of well-informed commenters is here to rebut
| them. In the best-case, these comments are simply misguided,
| but in the worst case it becomes a watering hole for all the
| antivaxxers and conspiracy theorists on this site to gather
| inglor_cz wrote:
| This napkin math ignores some very significant circumstances.
|
| People who suffer from rectal cancer usually undergo surgery to
| remove the primary tumor. But those trial patients weren't
| operated on, their treatment was non-invasive.
|
| How many rectal cancer sufferers who never undergo a surgery
| survive? I would bet that it is a lot less than 67 per cent.
| cowmoo728 wrote:
| And this was people with locally advanced rectal cancer.
| Typically this means the tumor has grown to a considerable
| size and is already causing symptoms severe enough for people
| to go to a specialist. I am not a doctor but my understanding
| is that a placebo in this case would have a 5 year survival
| rate that is pretty close to 0%.
| X6S1x6Okd1st wrote:
| Pretty sure the base rate you'd want to compare against is
| either placebo given -> remission or simply spontaneous
| remission. It appears that spontaneous remission is really
| quite rare.
|
| > [sponanteous remission of cancer] incidence is roughly one in
| every 60 000-100 000 cancer patients, but the true figure is
| unknown (2). Spontaneous regression of colon cancer seems to be
| particularly rare
|
| https://academic.oup.com/jjco/article/45/1/111/888056
|
| So using 0.0016% and 12 patients (which is what the paper the
| NYT actually links)
|
| For a ~50% chance of seeing one trial with 12 patients have
| complete remission you'd expect to see ~43k trails.
|
| (1 - 0.000016)^43000 = 0.502577
|
| I wouldn't discount this study based off of those numbers.
| fluidcruft wrote:
| 7131 rectal cancer studies or just cancer studies in general?
| rossdavidh wrote:
| Your basic result stands, but "survival" and "remission" don't
| necessarily equate. But I agree with your basic point.
| hirako2000 wrote:
| If i put a single coin to the vending machine and get 7 cans
| instead of 0.98, i surely will try a few times more before
| reaching the conclusion my coins are magical beans. Visibly
| medical research jump so quick to conclusion it's to the
| millions of news reader to swallow the clickbaits.
| raindear wrote:
| They did not just survive. They had no traces of cancer. That
| chance is much much lower.
| goodpoint wrote:
| Full remission without surgery?
|
| This looks much more like tossing a dice 18 times and getting a
| 6 every single time!
| fnordpiglet wrote:
| With 1000 sided die perhaps
| iskander wrote:
| There should be some kind of award for these kinds of "well
| actually" comments on HN that lack any kind of intuition for
| the domain.
|
| Cartoon montage: "By my calculations..." followed by driving a
| car off a bridge.
|
| Edit: as someone who works in cancer research, I can tell you
| that your prior for 18/18 locally advanced colorectal cancer
| patients achieve CRs without surgery should be ~0.
| yakak wrote:
| If I understand the article correctly they were excluding
| patients enrolled in chemo and radiation?
|
| If that's what they mean the survival rate wouldn't be 67% so
| this would imply a 1349 in 1350 chance the treatment is better
| than the average treatment?
| rad88 wrote:
| This analysis is mindless and inappropriate. If you care about
| this at all do yourself a favor and just read the study.
|
| https://www.nejm.org/doi/full/10.1056/NEJMoa2201445
|
| Otherwise redo your napkin math and cursory search to answer,
| specifically, whether all these cancers disappearing within
| weeks of dostarlimab treatment could be a fluke. And do not
| compare this to "rectal cancer's rate of survival", which is
| irrelevant and a completely different set of (parametrized)
| statistics, and also do not compare it to the total number of
| "cancer studies", which was an arbitrary choice and yielded
| this meaningless conclusion. Even if this kind of analysis was
| useful, why did you compare against the number of cancer
| studies, rather than rectal cancer (1910), or dostarlimab (41),
| or studies with the same staging and genetic pathology? It's
| meaningless.
|
| I don't believe you're qualified to tell anyone about the
| significance of this study, and much less dismiss it as a
| fluke.
| fnordpiglet wrote:
| I bet he's good at programming though.
| aaaaaaaaaaab wrote:
| Most definitely!
| hahaxdxd123 wrote:
| This is one of my favourite HN threads LMAO.
| system2 wrote:
| Turned into Reddit's armchair experts' discussion.
| epmaybe wrote:
| I got to spend a couple of weeks as an internal medicine intern
| with a medical oncologist who incidentally worked at memorial
| sloan prior to coming to my university. You could tell how
| excited he was about the current state of cancer research and new
| treatments, especially with immunotherapy.
|
| Wonder if docs will start off-label treating earlier with
| immunotherapy. There's tons of immune checkpoint inhibitors meant
| for different types of cancers and mutations.
| rubicon33 wrote:
| Fascinating, this drug (molecule) somehow "unmasks" the cancer
| cells, allowing the body's natural immune system to target and
| destroy them.
|
| How does a molecule do that!? Enters the blood stream, is
| absorbed by the cancer cell, and then...? Blocks some enzyme?
| _Microft wrote:
| The name of the drug ends in "-mab" [0] indicating that the
| drug is based on monoclonal antibodies [1,2]. Those antibodies
| are tweaked to bind to cancer cells which makes the immune
| system attack the cancer cells.
|
| [0]
| https://en.wikipedia.org/wiki/Drug_nomenclature#List_of_stem...
|
| [1] https://en.wikipedia.org/wiki/Monoclonal_antibody
|
| [2] https://en.wikipedia.org/wiki/Monoclonal_antibody_therapy
| ufo wrote:
| IIRC, in this particular case the antibodies bind to immune
| cells. Immune Checkpoints are a mechanism that keeps the
| immune system from attacking the own body but in cancer it
| can also stop the immune system from destroying the cancer.
| The checkpoint inhibitor antibodies remove these restrictions
| and allow the immune cells to attack the cancer. (The price
| is that they also become free to attack other things they
| shouldn't; autoimmune inflamations are common side effects.)
|
| https://en.wikipedia.org/wiki/Checkpoint_inhibitor
| cowmoo728 wrote:
| Several varieties of T cells are very dangerous and like to
| murder other cells. In order to prevent them from going on a
| rampage, they have a switch called PD-1 that calms them down.
| This prevents various auto-immune diseases in healthy people.
|
| Some varieties of cancer cells release a PD-1 ligand that turns
| off T cells when they get close to the cancer. So the cancer
| can "hide" from the immune system.
|
| This monoclonal antibody blocks PD-1 on T cells, turning them
| into unstoppable murderers. The hope is that they
| preferentially murder the cancer cells. Wikipedia says that ~5%
| of patients get dangerous side effects from blocking T cell
| PD-1, probably because the unstoppable T cells attack healthy
| kidney or liver tissue. But for people with specific types of
| cancer, the hope is that turning the T cells loose will kill
| the cancer first.
| vervez wrote:
| Couldn't read the article but yea, if it's a small molecule,
| most likely it's inhibiting some protein specific to cancerous
| cells. In this case, it sounds like it's blocking some protein
| that blocks human cells' innate ability to produce antigens,
| which signal to T-cells that they are defective and need to be
| destroyed.
|
| Sometimes we understand the biology after we discover a
| treatment.
| epgui wrote:
| It's not a small molecule, it's a biologic (antibody). It was
| designed specifically to do what it does, and not discovered
| by chance.
| instagraham wrote:
| That is the function of checkpoint inhibitors, according to an
| explanation I got from a cancer researcher after asking a
| similar question.
|
| Essential, cancer cells convince the immune system not to
| attack them, so these inhibitors target the mechanisms by which
| they do so to get the immune system to take note of these
| cells. Hope someone more knowledgeable will correct me if I'm
| wrong.
| adamredwoods wrote:
| Cancer cells express proteins that communicate with
| lymphocytes (white blood cells) to block apoptosis (cell
| death).
|
| We can't target the cancer cells, so we tweak the lymphocytes
| to block PD-1 receptors, thus ignoring ALL cells that express
| a lot of PD-L! protein.
|
| This unfortunately includes healthy cells.
| ohazi wrote:
| It's an antibody.
|
| https://en.m.wikipedia.org/wiki/Dostarlimab
|
| https://en.wikipedia.org/wiki/Pembrolizumab
| zzzeek wrote:
| My dad was fortunate enough to get into a trial at Sloan for
| Obinutuzumab for Chronic Lymphocytic Leukemia. At the moment,
| after 6 weeks of treatment, the percent of cancerous cells in his
| bone marrow has gone from 95% to 5%. The treatment was very
| intense as it overloads the kidneys on the first few treatments
| due to the dramatic amount of cells being flushed out. This is a
| cancer for which there was not much treatment previously other
| than extreme chemotherapy which still left little hope for
| complete remission. A family friend was also treated for Non-
| Hodgkins' lymphoma on another drug trial and she's now in full
| remission.
|
| my uninformed impression is that there's a lot of new cancer
| treatments happening now that can turn the tide for a lot of
| types of cancer.
| philjohn wrote:
| Similar story to the husband of my sister-in-law's sister (I
| think that's how you say it).
|
| Metastatic Melanoma, had spread to his stomach. Got on the
| trial for Ipilimumab and is still here a decade and change
| later.
| [deleted]
| adamredwoods wrote:
| For leukemia, there are a lot of promising new treatments and
| clinical trials. For metastatic solid-state tumors, much less.
| We're still in the dark ages of cancer treatment.
| axpy906 wrote:
| What treatments in particular?
| adamredwoods wrote:
| Car-T seems promising for leukemia and lymphoma, but not as
| efficacious in solid tumors:
|
| https://www.lls.org/treatment/types-
| treatment/immunotherapy/...
|
| Also 2nd gen BTK inhibitors:
|
| https://en.wikipedia.org/wiki/Acalabrutinib
|
| https://en.wikipedia.org/wiki/Bruton%27s_tyrosine_kinase
| gjreda wrote:
| Imatinib (Gleevac) revolutionized treatment for patients
| with chronic myeloid leukemia (CML). Prior to the drug's
| discovery, CML patients generally had seven years to live
| (possibly less depending on how advanced the cancer was).
| Now their lifespan mirrors the general population.
|
| I'd highly recommend the book The Philadelphia Chromosome
| if you're interested in learning more.
| robocat wrote:
| FYI: your comment is a unique result for "metastatic solid-
| state tumors"[1], so much much less?
|
| [1] https://www.google.co.nz/search?q=%22metastatic+solid-
| state+...
| WheatM wrote:
| DarylZero wrote:
| We talking tumors in the state of metastatic solid?
| beefman wrote:
| The "-state" part is the neologism. GP meant "solid tumors"
| or "solid cancers".
| SnowHill9902 wrote:
| I think he means just solid in the sense that it's not
| moving cells.
| lmeyerov wrote:
| I think the usual split of solid tumor vs blood (aka
| 'hematologic' or 'heme')
| pc86 wrote:
| Probably a decade ago a friend of mine passed from Acute
| Lymphocytic Leukemia in his 20s. I'm not sure what the
| differences are between ALL and CLL (other than knowing the
| differences between acute and chronic in a more general sense
| of course) but glad to see they are making at least some
| progress.
| zzzeek wrote:
| the chronic form is often written off when first diagnosed as
| "it will never affect you" - it can take decades to cause
| bigger problems. Dad's 80 and it's been causing bigger
| problems for some years. It would be surprising if there
| aren't new treatments for the acute form you mention as well.
| abirch wrote:
| That's great for your dad. Thank you for also distinguishing
| between types of cancer and the nebulous term cancer, many
| people don't make the distinction.
| zzzeek wrote:
| googled first to get the correct spellings and all that, been
| on hacker news a long time...
| fnordpiglet wrote:
| I'm glad to hear about the positive outcomes for your dad. I
| hope he beats the cancer. It's an exciting time to be alive.
| digisign wrote:
| Curious about the drug for non-hodgkins lymphoma, may have
| helped a friend who passed last year. Too late on one hand, but
| promising for future folks.
| BnRJ401E29F8Q3v wrote:
| Posting a paywalled article should be a bannable offense on this
| site.
| timbit42 wrote:
| Try the 'Bypass Paywalls Clean' web browser plug-in.
| kleer001 wrote:
| If you'd taken a moment to look 2 people have already posted
| archive links to get around the pay wall. Settle down.
| jwilk wrote:
| From the FAQ <https://news.ycombinator.com/newsfaq.html>:
|
| > _It 's ok to post stories from sites with paywalls that have
| workarounds._
|
| > _In comments, it 's ok to ask how to read an article and to
| help other users do so. But please don't post complaints about
| paywalls._
| mmcnl wrote:
| There are many articles like this every year. I understand
| there's no silver bullet for curing cancer, but I am interested
| in the actual results of new treatments instead of the potential
| of new treatments, which seems to attract way more headlines.
|
| Is there an overview somewhere of new treatments over the years,
| and their effect? What is the progress we have made?
| pella wrote:
| > It was a small trial, just 18 rectal cancer patients,
|
| just 12
|
| _" All 12 patients (100%; 95% confidence interval, 74 to 100)
| had a clinical complete response, with no evidence of tumor on
| magnetic resonance imaging, 18F-fluorodeoxyglucose-positron-
| emission tomography, endoscopic evaluation, digital rectal
| examination, or biopsy. "_
|
| https://www.nejm.org/doi/full/10.1056/NEJMoa2201445
| gus_massa wrote:
| Is this the same study?
|
| https://www.healio.com/news/hematology-oncology/20220605/dos...
|
| > _At the time of presentation, 18 patients were enrolled on
| trial._
|
| > _Results among the 14 patients with at least 6 months follow-
| up showed a complete response among all patients (95% CI,
| 74-100), with no evidence of tumor on biopsy, digital rectal
| exam, endoscopic visualization, fluorodeoxyglucose-PET or MRI.
| The other four patients are responding to treatment._
| abirch wrote:
| As with most experiments there's a control group (6 patients).
| The original statement of 18 participants is correct along with
| yours of 12 patient treatment group.
| dash2 wrote:
| But then I guess it is slightly less surprising that all 12
| people had remission, rather than all 18. (Or if all 18 had
| remission, then that's amazing but might not be to do with
| the drug.) Maybe it is still a great result, just slightly
| less significant.
| abirch wrote:
| You're correct. We'd expect to see more extreme outcomes
| with smaller sample sizes. The question is does this
| translate to more drugs when administered early which was
| the real reason for this study.
| satellite2 wrote:
| A placebo control group when there is an established standard
| of care? That sounds highly unethical. The above link to the
| abstract don't mention this and I don't have access to the
| full text paper. If you do can you clarify what the control
| arm received?
| abirch wrote:
| I intentionally avoided using placebo group. The control
| cohort may not have had cancer at all
|
| _____________
|
| The plan is to enroll six patients with MSI, regardless of
| their primary cancer diagnosis. This cohort will serve to
| generate hypothesis and initial data to plan a larger
| study. All analyses from this cohort will be exploratory
|
| https://clinicaltrials.gov/ct2/show/NCT04165772
| mft_ wrote:
| I appreciate your good intentions, but you should
| consider not writing things on the internet like this -
| as both of your posts are effectively misinformation.
|
| > As with most experiments
|
| This isn't true. It's absolutely standard in earlier
| trials of investigational agents to _not_ have any sort
| of control arm.
|
| > there's a control group (6 patients).
|
| This isn't true. Within the study you posted, there are
| two different cohorts, with different patient types
| included.
|
| > The control cohort may not have had cancer at all
|
| This isn't true. The group you're calling a control
| cohort (cohort 2) must all absolutely have cancer, and
| are all actively treated with the study drug (TSR-042).
| grej wrote:
| https://archive.ph/I4jqH
| sonicggg wrote:
| After reading it, my suspicion was confirmed. Yet another mab.
| Very powerful, but expensive to scale and synthesise. I guess
| poor people will have to just suck it up and die. We don't have
| the tech yet to make these cost effective. Big pharma loves this
| natural barrier of entry though.
|
| Also, don't expect this stuff to be available anytime soon. FDA
| process is pretty slow, and sometimes political. Maybe if it were
| effective against Sars-Cov-2, FDA would be willing again to rush
| it though the door. Still can't wrap my head around how stuff
| like Molnupiravir made the cut. They just don't have any shame.
| adamredwoods wrote:
| This is why there is a fast-track to accelerate break-through
| treatments, which dostarlimab utilized (but stalled thanks to
| covid):
|
| https://www.fda.gov/patients/learn-about-drug-and-device-app...
|
| But, yeah, the FDA is all over the place.
| GordonS wrote:
| -mab drugs really are incredible. I actually take 2 different
| ones (erenumab and omalizumab), and the results surpassed all
| my expectations, especially after negative or lacklustre
| results from many "conventional" medications beforehand.
|
| But aye, they aren't cheap.
| inglor_cz wrote:
| There were times when aluminium was so expensive that the
| French emperor dined on an aluminium plate. His guests had to
| do with gold and silver. Several decades later, aluminium was
| an everyday material.
|
| I definitely hope that we can come with a cheap method of -mab
| production. I am almost sure we one day will.
| MontagFTB wrote:
| > The medication was given every three weeks for six months and
| cost about $11,000 per dose.
|
| That's an $88,000 treatment for the medication alone. Given the
| apparent success of the drug, is it expected for the price to
| drop as the volume of patients spike?
| yumraj wrote:
| I would actually expect the opposite. If the drug is approved
| then the price would go up several times.
| bearjaws wrote:
| Chemotherapy for 3-4 months is around $200,000 - $400,000.
|
| You will not see a price reduction, if it doesn't require
| chemotherapy or significantly reduces the number of rounds of
| chemotherapy, this drug will cost $150k+ for full treatment.
|
| All of this assumes side effects are better than chemotherapy.
| Given chemotherapy care plans are some of the most arduous, it
| will be hard to be worse than chemo.
| gruez wrote:
| > Chemotherapy for 3-4 months is around $200,000 - $400,000.
|
| Is that the american price or the "other developed countries"
| price?
| georgeburdell wrote:
| This is why although I've almost got enough money to retire
| (~20x yearly expenses) but I'll keep on working for another
| decade or two. All of these whiz-bang new treatments are going
| to be expensive. The most expensive medical procedure right now
| is a heart transplant at about $1M. Then there's the $10k/mo
| for a nursing home
| qgin wrote:
| If you need a heart transplant, are you planning to self-pay
| that?
| georgeburdell wrote:
| I have health insurance but I don't trust some company to
| not dither when time counts
| ta988 wrote:
| Is that the real price of a nursing home in the US? Who can
| afford that?
| qgin wrote:
| You either have enough to pay or you pay until all your
| assets are exhausted to $0 and then Medicaid takes over.
| GordonS wrote:
| I'm guessing Medicaid isn't going to pay for the kind of
| nursing home that costs $10k/month?
| ok123456 wrote:
| Medicaid will force you to sell your house once that
| happens.
| MauroIksem wrote:
| Yes it sounds crazy but when i was kid i worked as waiter
| at a nursing home and heard it cost 8k a month. That was
| nearly 20 years ago.
| horsawlarway wrote:
| Yes - that's not unreasonable for a full time care facility
| for something like dementia or Alzheimer's in the US (it's
| below what we paid for my grandmothers).
|
| If you're lucky - they have long term care insurance, and
| that covers most of the expenses for approx 2 to 10 years
| (depending on how old the insurance is - it's getting
| harder to find long plans, and they're all getting
| significantly more expensive as it turns out more folks
| needed them).
|
| Otherwise... you spend everything, and then your kids pay.
|
| We split my grandmothers down the middle - my mom's had
| insurance, we covered my dad's.
| spywaregorilla wrote:
| I'd rather just die. Throw a party. Tell my kids they're
| getting a ton of cash. Say good bye on happy terms.
|
| Vs. a miserable decay for everyone involved at huge
| expense. It's not worth it. Forget the money. The
| emotional toll is large and for whose benefit?
| Merad wrote:
| Even ignoring the fact that human euthanasia is illegal
| in most of the US, it's rarely that easy. Both of my
| paternal grandparents lived into their 90s but suffered
| from mental decline (different forms of dementia) and
| died as shells of their former selves. If you could have
| spoke to either of them at the end of their lives but
| with their full mental capacity, I suspect they would
| have said that they'd have preferred to die earlier
| rather than live through that decline... but in reality
| by the time anyone understood how severe their mental
| decline would become they were already well past the
| point that they could have consented to euthanasia.
|
| In theory you could presumably have some kind of system
| where a person of sound mind could that said, in effect,
| "if my condition declines beyond _____ then I want to end
| it," but doing so would be an incredibly touchy subject
| even if euthanasia was legalized. Unfortunately there is
| a very real potential for such a directive to by abused
| by people motivated by greed (gimmie that inheritance) or
| who simply don't want to deal with an aging relative who
| needs more help but hasn't reached the point where their
| euthanasia directive should be triggered.
| LinuxBender wrote:
| Assuming forethought one can set up a living trust. I
| have one. If I can no longer consent then a family member
| I designated can consent for me. It isn't without risk
| and requires a lot of trust.
| nicoburns wrote:
| > but doing so would be an incredibly touchy subject even
| if euthanasia was legalized.
|
| It would, but the alternative is to make people live
| though this mental decline as we currently do. IMO it
| would be well worth the risks to be able to ameliorate
| the end of peoples lives.
|
| My plan is to end my life well _before_ I hit severe
| mental decline (not "if it gets worse", with all the
| ambiguities that entails). If that cuts a few years off
| then a be it!
| saiya-jin wrote:
| It really, really doesnt have to be that complex. If
| people are religious nuts to believe suicide would bring
| them to some religion's hell (it won't, since it doesn't
| exist even if their variant of god(s) would exist), there
| are tons of ways to pass out rather quickly and not
| fulfill that criteria, and not bother anybody with the
| process (various car/train jumpers or suicide-by-cop
| doers whom I consider utter selfish a-holes).
|
| Walk out to a storm or blizzard not equipped for it. Go
| fight a bear or lion or crocodile. Go for a swim that you
| can't come back from. Do some high risk type of adventure
| that in high age is not even discussed. If you make it,
| great experience, move to next one.
|
| The list is literally endless and can be done in some
| form even by quadriplegics. It allows you to plan goodbye
| and closures, wills etc. The fear and pain and suffering
| is concentrated into such a tiny sliver of time compared
| to dying discussed its uncomparable.
|
| It just takes balls to accept that this is it, what
| mattered for you in life is over, and now its time to
| think about your closest ones and not yourself. Like a
| breakup, many will continue living in bad relationship
| since its a small amount of pain and evil every hour,
| every day. Instead of standing up and walking off to
| uncertainty and freedom.
| foobiekr wrote:
| Normally, I would not comment on this.
|
| You say that now.
|
| I am close to someone looking at this now after holding
| that exact view for a lifetime, what I see them actually
| doing is delaying and delaying and confronting that, even
| on their darker days when they are thinking hard about
| doing it, the logistics of zero-risk-of-survival suicide
| are pretty terrible.
|
| It's sobering to watch because I, too, hold the view you
| lay out above, and now watching this, I think I'd better
| work out my logistics while I'm relatively young and
| healthy.
| nicoburns wrote:
| I wonder if that is due to the lack of good options for
| the ending life? I currently feel like I would like to go
| on my own terms when the time comes, but none of the
| options available look very appealing! (and many of them
| can come with legal trouble for anyone who helps).
| foobiekr wrote:
| That's a big part of it, certainly, but that's not
| changing any time soon unfortunately.
| WalterBright wrote:
| My father had long term care insurance. He got
| Alzheimers, and went into a nursing home, and passed
| after 3 years. The insurance covered most of nursing home
| fees.
|
| I did some math on the premiums he'd paid for the
| insurance, and the payout. It was a break even.
|
| In other words, putting the premiums into an HSA would
| have financially worked out a lot better.
| toast0 wrote:
| Medicaid will pay for nursing homes (if medically
| justified) once you run out of money; but the per diem
| isn't that much. Apparently a lot of nursing homes will
| commit to accepting medicaid reimbursement for continuing
| care if you can commit to paying N years first. I've
| heard usually 2, sometimes 3. If you can swing that, your
| kids won't have to pay, or they'll pay for incidentals,
| but not the whole thing. There are homes that just
| straight up take medicaid, but they review poorly; it's
| not enough to pay decent staff at reasonable levels, so
| there you go.
|
| What I've heard about long term care insurance is you
| can't really buy a plan with useful coverage anymore. The
| old plans were good as long as the insurer remained
| solvent, but many didn't.
| greedo wrote:
| "Otherwise... you spend everything, and then your kids
| pay."
|
| That's incorrect. With Medicaid, the recipient is require
| to spend down their assets to a small amount, then
| Medicaid will pick up the remainder. The recipient's
| children aren't on the hook for anything. Of course, they
| won't receive any inheritance since the estate of the
| recipient has been drained prior to Medicaid.
| spfzero wrote:
| It's the type of nursing home. If you are in an "assisted
| living" home, it is less. As a data point, maybe $5800/mo
| in CA, which includes food and various social programs.
| msandford wrote:
| The other thing you can do is setup a trust for yourself so
| that you're broke on paper long before the trust runs out of
| money. I don't know if it's ethical but it's legal.
| hughes wrote:
| What's unethical is a system that completely drains a
| person's wealth for getting sick.
| caddemon wrote:
| Certainly this happens for procedures that should be
| cheap, and nursing homes are also a huge issue. But in
| the current discussion it's not clear to me that
| something like a heart transplant should be cheap.
| Development of a novel treatment can be very expensive
| and sometimes involves scarce resources.
| trasz wrote:
| In most developed countries heart transplants are
| literally free. That's what proper healthcare system is
| for.
| caddemon wrote:
| The US alone does ~2/3 of worldwide heart transplants, I
| think there is a tradeoff here. It's also not actually $1
| million out of pocket for most people.
| saiya-jin wrote:
| It can't be cheap, and in any high quality medical system
| apart from US thats not a concern for the patient, ever,
| at all.
|
| One of those cases where US individualism and utter lack
| of social thinking (completely unrelated to
| socialism/communism but many simpler folks fail to
| distinguish that) screws up needful parts of society
| mkoubaa wrote:
| Pay lots of money to spend more of your life dying
| robocat wrote:
| _spend_ a decade of your life to possibly save a few years
| later? If you are "investing" your time for someone else,
| perhaps you could just give them your time directly instead?
| MauroIksem wrote:
| It's cheaper than other chemos..my mom has breast cancer and
| her chemo according to insurance cost 65k per infusion every 3
| weeks.
| Gordonjcp wrote:
| That's *insane*. Here in Scotland each dose costs the NHS at
| most a couple of hundred quid, plus about that again to
| administer. None of that is paid by the patient.
| sirsinsalot wrote:
| It is crazy what the incentives do in the US.
|
| It is a bit like car insurance here, which keeps rising
| because insurance companies keep edging the cost of a claim
| upwards (courtesy cars at extortionate rates, repair, ...)
| because there's no insentive to keep costs down or not
| profiteer.
|
| With the NHS's buying power for drugs, they can get a
| little bit nearer a sensible margin from the supplier
| rather than the insane US costs underwritten by
| inflationary insurance.
| qgin wrote:
| Price is only slightly related to production costs. It's much
| more about all the work that goes into getting something like
| this from basic science to trials to approval (and all the
| other drugs that fail along the way).
|
| In the current model, pharma only stays in business by
| recouping all of the during the patent protected period of any
| drug that makes it to market.
| dangle1 wrote:
| Probably not. That's an average-to-low price for a monoclonal
| antibody in the US, and many people with chronic (non-cancer)
| conditions pay that price every few weeks to remain healthy
| under something like a health-as-a-subscription model.
| ta988 wrote:
| Something I saw in drug pricing conferences is that there is a
| push to price drugs according to how much personal and social
| benefit they provide and how much a person would be willing to
| pay to extend their life or resolve a condition. An extreme
| example for that model, if a drug allow a kid to survive and
| have a productive life it can be priced millions whereas a
| palliative drug could be much cheaper.
|
| This has nothing to do with research and cost of development
| anymore (if it even ever did).
| klyrs wrote:
| I met a researcher once who was doing what appeared to be
| groundbreaking research on cancer care. He had this
| beautiful, tear-jerker story about losing his wife that cast
| a rosy, altruistic hue on his research. When he was asked
| what the device would cost, he cheerily replied "whatever the
| market will bear." That's always stuck with me -- the problem
| with American healthcare is the American interpretation of
| capitalism. Dude was living off of government research
| grants.
| pkaye wrote:
| > That's always stuck with me -- the problem with American
| healthcare is the American interpretation of capitalism.
| Dude was living off of government research grants.
|
| Do the drug companies in Europe do any different though?
| xmodem wrote:
| I mean, sort of? Except, not really, because, "what the
| market will bear" is determined by what governments can
| negotiate - there's no Medicare Part D tying their hands.
| brigandish wrote:
| > That's always stuck with me -- the problem with American
| healthcare is the American interpretation of capitalism.
|
| What should it cost instead?
|
| > Dude was living off of government research grants.
|
| Let's imagine his work comes to fruition. The drug is
| expensive but efficacious - is this not a good thing?
| Should the government have not helped fund this drug
| because now it's expensive?
|
| The alternative is a world without that drug and without as
| much incentive to produce the drug. I'm not sure that's a
| good trade.
| klyrs wrote:
| > Should the government have not helped fund this drug
| because now it's expensive?
|
| No, the government should set a reasonable price for the
| product they funded. A high enough price to fund
| manufacturing, a low enough price to ensure that people
| who need the treatment have ready access to it. If the
| upper bound on price is too low for universal access,
| that's what subsidies are for.
|
| Instead, we have free money to bootstrap extractive
| capitalists, at cost and detriment to people who need
| care.
| chris_wot wrote:
| I'm sorry, but that's a non sequitur. The alternative is
| not that the drug wasn't produced. It is that the drug
| wasn't developed _by private enterprise_.
| brigandish wrote:
| Please don't give insincere apologies, they're
| rhetorically weak and pairing insincerity with something
| that should be sincere isn't a good look.
|
| Which segues nicely to this pairing of public funding and
| private enterprise. No, if the drug wouldn't be sold for
| a profit then the incentive to make it wouldn't exist and
| the funds would not be applied for and the ironic pairing
| - if it is ironic, which I don't think it is - wouldn't
| exist either.
|
| Unless we're going to believe that researchers go through
| the mill of applying for funding and doing research
| simply to get the funding and stay in badly paid
| employment?
| pmyteh wrote:
| I don't know about medical research, but that's exactly
| what the rest of us in universities do.
| astrange wrote:
| You get social rewards like titles, getting into vicious
| personal arguments over personal things, and being able
| to reject younger researchers' work in peer review if it
| would disprove yours.
| jlarocco wrote:
| > Should the government have not helped fund this drug
| because now it's expensive?
|
| If he wants to charge "what the market will bear," then
| he should fund the research through the market.
|
| If he wants government handouts to do the research then
| the public deserves to get the benefit that it's paying
| for - we're not funding it to make some guy rich.
|
| I'm not saying it should be free, but he's already opted
| out of the market, so he loses out on market pricing.
| Manufacturing cost plus some reasonable percentage for
| the creator.
| goodpoint wrote:
| > What should it cost instead?
|
| To patients? It should be free.
|
| To society? The initial research cost plus the bare
| manufacturing cost.
| nootropicat wrote:
| That's not the problem, that's the reason almost all
| medical development happens in America.
|
| Rich people from all around the world travel to American
| hospitals if they have serious health problems, not to
| public hospitals even in rich countries like Norway. Public
| healthcare works (poorly) as a way to distribute existing
| treatment, but is worthless at incentivizing development.
| Really, the entire world is unfairly parasitizing on
| Americans to fund medical research.
| bwb wrote:
| That is not true, look up medical outcome data. Most of
| europe is far ahead or even with the USA.
| caddemon wrote:
| Unless you are looking at outcomes of only the top
| institutions it's not really what he was saying. The US
| has a bad system for the average person for sure, but
| that does not mean that the US doesn't have one of the
| best systems if you can afford the best care. If you have
| medical outcome data that disputes that specifically I'd
| be interested.
| abeppu wrote:
| But so two patients in different financial circumstances
| would both pay basically as much as they are able for a life-
| saving treatment, arriving at very different amounts, right?
|
| - that sounds a lot like ransom?
|
| - I think if they adopt a policy of price-discrimination to
| the point of literally taking you for all (or most) of what
| you're worth (or projected to be worth), we should turn
| around and apply the same reasoning to corporate tax rates.
| mattmaroon wrote:
| Generally drugs that cure a condition cost MORE than the pre-
| existing treatments while under patent protection with no
| viable competitors. There's only one source and you'd rather
| cure the disease with a pill so you'll pay more.
|
| Market dynamics don't come into play when there's only one. If
| competitors appear or after patents expire it may get cheap,
| but the cost early on will have no relation at all to
| production costs.
| adamredwoods wrote:
| This price won't drop, it isn't common enough and still in
| clinical trials.
| mchusma wrote:
| This brings up again the sorry state of medicine being "default
| banned". Should this treatment be banned for patients? Absolutely
| not.
|
| Is it a small, underpowered study that needs to be replicated?
| Absolutely.
|
| Could it warrant banning in the future? Sure.
|
| Should it be covered by insurance? Complicated.
|
| We need to unbundle these things.
| scoopertrooper wrote:
| 70% of Phase 2 trials fail and 50% of Phase 3 trials fail[1].
| Why should the default to be to approve drugs in the early
| stage of human experimentation?
|
| Here are some interesting case studies of drugs graduating from
| Phase 2 trials only to fail Phase 3 trials on efficacy and
| safety grounds: https://www.fda.gov/media/102332/download
|
| [1]
| https://www.parexel.com/application/files_previous/5014/7274...
| rzz3 wrote:
| Because (at least) for people with a high risk of dying, and
| operating under well-informed consent, that decision should
| be between patients and their doctors alone.
| xiphias2 wrote:
| This experiment of treating cancer with checkpoint inhibitors
| before chemotherapy should be widened to all cancers where the CI
| is available and effective as soon as possible, as it can cure
| lots of lives.
|
| I'm worried that it will take many years until that happens.
| bsder wrote:
| > I'm worried that it will take many years until that happens.
|
| For good reason. If we detect cancers early, surgery and
| radiation are often very good nowadays--often allowing you to
| skip chemotherapy. And these are far less likely to kill the
| patient than a checkpoint inhibitor (which can overload your
| kidneys if it works or give you autoimmune diseases even if it
| doesn't).
|
| The problem is that there are a lot of cancers we don't detect
| early-lobular breast cancer, pancreatic cancer, etc. And for
| things like intestinal cancers radiation is particularly bad.
|
| These kinds of immune treatments are likely to get promoted
| first line treatments _quickly_ if they really are this good--
| especially since they are likely to work on stage 4 metastatic
| cancers for which we don 't have anything decent.
| xiphias2 wrote:
| My ex girlfriend detected breast cancer early at age 28, but
| the doctors told her that she's ,,too young'' to have cancer.
| 1 year later on the checkup they said that it's too late (she
| has BRCA1 mutation). The last 10 years have been fighting
| with cancer, having about 10 operations on her, but the worst
| thing was chemotherapy (she said that she would rather die
| than go through it again, I think the dose had been too large
| for her probably as well, as she's 44kg). The cancer went
| away and came back multiple times, and it got so bad that we
| had to separate, but she's still my best friend (and I didn't
| find any other person to spend my life with).
|
| She's right now on an experimental checkpoint inhibitor
| (stage 4 metastatic since a year ago), and it probably gives
| her another few months, but every time I see her I think that
| she only has a year left in her life and get sometimes
| frustrated that the experiments are not optimized to get the
| more effective treatments in earlier stage.
| ImHereToVote wrote:
| Maintaining well established medical procedures is much more
| important than some bio-robots dying.
| adamredwoods wrote:
| The treatment is not without side effects. It's still a general
| therapy (it blocks all lymphocyte PD-1 receptors), not a
| cancer-target one.
|
| Oncology is slow. It really is up to the patients to push the
| oncologist teams.
| SiempreViernes wrote:
| Using humans, N = 18. Quick search didn't give any estimate of
| the chance probability of all going into remission by unrelated
| reasons, but I imagine it's pretty high compared to the number of
| small cancer trials run around the world.
| dekhn wrote:
| Cancer rarely, if ever goes into remission on its own (rectal
| cancer, specifically). You would never see this happen randomly
| to everybody in a trial unless there was some external factor.
| LinuxBender wrote:
| I don't have a link handy but I have read in the past some
| cases of trial participants being ejected from a trial
| because they started prolonged fasting and killed their
| cancer cells. I suppose that is in line with the external
| factor you mention.
| lawrenceyan wrote:
| A healthy reminder that these articles are generally sponsored by
| the company developing the specific drug.
|
| Cancers will be mostly treatable within our lifetimes though (in
| many cases already are). All the pieces are there technology
| wise.
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