The Cost of Living
October 27, 2013 1:28 PM Subscribe
The Rising Cost of Cancer Drugs: "New drugs could extend cancer patients’ lives—by days. At a cost of thousands and thousands of dollars. Prompting some doctors to refuse to use them."
I want to know something about quality of life. If that's 42 days stuck in a hospital bed, dazed with pain medication, clearly it isn't worth it.
posted by Chocolate Pickle at 1:39 PM on October 27, 2013 [5 favorites]
posted by Chocolate Pickle at 1:39 PM on October 27, 2013 [5 favorites]
No, man, those last 42 days of metastatic and terminal colon cancer is a breeze. Excellent QoL!
That'll be 300k, debit or credit?
posted by hobo gitano de queretaro at 1:46 PM on October 27, 2013 [2 favorites]
That'll be 300k, debit or credit?
posted by hobo gitano de queretaro at 1:46 PM on October 27, 2013 [2 favorites]
As the child of someone who died of metastatic and terminal colon cancer, I second hobo's comment. Extending the end of life for such a disease would be a curse, not a mercy.
On the other hand, extending the quality of life before the most awful part, well, some people pay $20M to enter space. Others would pay $300k to have one more trip to the park with their kids.
I don't think the government should pay for either, but if you've got the resources yourself, or paid up for insurance that covers it, then enjoy your walk.
posted by zippy at 1:49 PM on October 27, 2013 [3 favorites]
On the other hand, extending the quality of life before the most awful part, well, some people pay $20M to enter space. Others would pay $300k to have one more trip to the park with their kids.
I don't think the government should pay for either, but if you've got the resources yourself, or paid up for insurance that covers it, then enjoy your walk.
posted by zippy at 1:49 PM on October 27, 2013 [3 favorites]
Zaltrap’s effectiveness, in his opinion, was almost identical to that of Avastin, an FDA-approved cancer drug that had also been targeted at that same patient population.
It is unclear how Zaltrap got past clinical trials if it has the same, and not better efficacy than the existing drug. Usually drugs fail trials if they are only as good as current offerings. That said, if Zaltrap costs twice as much as Avastin and only has the same efficacy, then I could see a rational argument not to prescribe it. The only reason to prescribe it would be if a patient would be in a different population that responds to Zaltrap but not Avastin, or the doctor is a shareholder in the company that makes Zaltrap.
posted by Blazecock Pileon at 1:51 PM on October 27, 2013 [1 favorite]
It is unclear how Zaltrap got past clinical trials if it has the same, and not better efficacy than the existing drug. Usually drugs fail trials if they are only as good as current offerings. That said, if Zaltrap costs twice as much as Avastin and only has the same efficacy, then I could see a rational argument not to prescribe it. The only reason to prescribe it would be if a patient would be in a different population that responds to Zaltrap but not Avastin, or the doctor is a shareholder in the company that makes Zaltrap.
posted by Blazecock Pileon at 1:51 PM on October 27, 2013 [1 favorite]
Blazecock. I have not checked Zaltrap was probably tried against a placebo in its pivotal trial or was perhaps the trial was structured as a 'non-inferiority' trial which is not uncommon
posted by london302 at 2:06 PM on October 27, 2013 [1 favorite]
posted by london302 at 2:06 PM on October 27, 2013 [1 favorite]
The cost is actually $40k – $80k for the drugs in the US (the variation depends on the monthly cost, ~$5k/mo for one, ~$10k/mo for another)
The $300k is the theoretical cost if the drug achieves one year of life extension, and so is taken for over a year and a half (extending the life by a year, plus the fixed time of seven months needed to take the drug in order to be effective). In reality, the drug extends life by a month and a half, and so a patient takes the drug for about a third of the theoretical value used for the $300k calculation.
posted by zippy at 2:11 PM on October 27, 2013
The $300k is the theoretical cost if the drug achieves one year of life extension, and so is taken for over a year and a half (extending the life by a year, plus the fixed time of seven months needed to take the drug in order to be effective). In reality, the drug extends life by a month and a half, and so a patient takes the drug for about a third of the theoretical value used for the $300k calculation.
posted by zippy at 2:11 PM on October 27, 2013
If I'm ever tricked, forced, coerced, or misled into aggressive cancer treatments in the final weeks of terminal cancer instead of good hospice care I will haunt the shit out of those people responsible.
posted by Slackermagee at 2:14 PM on October 27, 2013 [50 favorites]
posted by Slackermagee at 2:14 PM on October 27, 2013 [50 favorites]
I don't believe in haunting but I share the sentiment.
posted by St. Alia of the Bunnies at 2:15 PM on October 27, 2013 [4 favorites]
posted by St. Alia of the Bunnies at 2:15 PM on October 27, 2013 [4 favorites]
I think the picture with Zaltrap vs Avastin is slightly more complex than the article indicates. It is true that overall survival rates are similar (actually Zaltrap appears to be a bit less effective at 10 months vs 11 months for Avastin), but progression free survival increases from 4 months to 7 months. So the argument in favor of Zaltrap is a better quality of life initially, followed by a more rapid end state. Which, of course, is a deal many patients would take.
Obviously, there is still some question about the value compared to the cost, but the article is a bit misleading. It is the case that Zaltrap's adoption as a second line drug is poor, not only because of cost, but due to having not that much upside and less well-known side effects.
posted by Lame_username at 2:17 PM on October 27, 2013 [5 favorites]
Obviously, there is still some question about the value compared to the cost, but the article is a bit misleading. It is the case that Zaltrap's adoption as a second line drug is poor, not only because of cost, but due to having not that much upside and less well-known side effects.
posted by Lame_username at 2:17 PM on October 27, 2013 [5 favorites]
I don't think the government should pay for either, but if you've got the resources yourself, or paid up for insurance that covers it, then enjoy your walk.
You're posing the wrong scenario. The question should be why Regeneron can make $750m on $1.4b in revenue in 2012 and still charge 300 grand a year for vital treatment.
posted by Talez at 2:18 PM on October 27, 2013 [5 favorites]
You're posing the wrong scenario. The question should be why Regeneron can make $750m on $1.4b in revenue in 2012 and still charge 300 grand a year for vital treatment.
posted by Talez at 2:18 PM on October 27, 2013 [5 favorites]
But extending terminal life by a couple months is so important. It's not like it's something unnecessary like replacing our current crop of antibiotics.
posted by happyroach at 2:27 PM on October 27, 2013 [5 favorites]
posted by happyroach at 2:27 PM on October 27, 2013 [5 favorites]
In reality, the drug extends life by a month and a half, and so a patient takes the drug for about a third of the theoretical value used for the $300k calculation.
No, to gain the month and a half extension, the drug must be taken for several months along with other chemotherapy drugs -- so you are, in fact, taking the drug for a year to gain that month and a half over not taking the drug.
And that's *solely* the cost of the drug. It does not count the cost of other chemo meds, or of the professional time and materials for administration, or the meds to counteract the side effects of the chemo meds.
posted by eriko at 2:27 PM on October 27, 2013
No, to gain the month and a half extension, the drug must be taken for several months along with other chemotherapy drugs -- so you are, in fact, taking the drug for a year to gain that month and a half over not taking the drug.
And that's *solely* the cost of the drug. It does not count the cost of other chemo meds, or of the professional time and materials for administration, or the meds to counteract the side effects of the chemo meds.
posted by eriko at 2:27 PM on October 27, 2013
As much as I would like to have the classic discussion of "no, surely health care economics and the pharmaceutical industry can't possibly be that broken,"
...As a public service announcement, please document an advance directive, and a living will somewhere and send them to someone you trust to represent you (bonus points if they won't freak out and call an intervention).
You know your crazy, estranged relative from Florida/California/Mongolia who believes in miracles/crystals/reiki/papal infallibility?
She's going to be the first one to the hospital, making the strongest case for Eternal Sunshine of the Spotless Life Support and we're going to have to listen to her unless there's clear and expansive documentation otherwise. And once those gears start turning in the hospital bureaucracy, it's hard to go back.
http://www.nia.nih.gov/health/publication/end-life-helping-comfort-and-care/planning-end-life-care-decisions
posted by hobo gitano de queretaro at 2:28 PM on October 27, 2013 [14 favorites]
...As a public service announcement, please document an advance directive, and a living will somewhere and send them to someone you trust to represent you (bonus points if they won't freak out and call an intervention).
You know your crazy, estranged relative from Florida/California/Mongolia who believes in miracles/crystals/reiki/papal infallibility?
She's going to be the first one to the hospital, making the strongest case for Eternal Sunshine of the Spotless Life Support and we're going to have to listen to her unless there's clear and expansive documentation otherwise. And once those gears start turning in the hospital bureaucracy, it's hard to go back.
http://www.nia.nih.gov/health/publication/end-life-helping-comfort-and-care/planning-end-life-care-decisions
posted by hobo gitano de queretaro at 2:28 PM on October 27, 2013 [14 favorites]
I will haunt the shit out of those people responsible.
If you think about it, haunting the shit back into them might be a more ghastly punishment, if a bit like a certain Piers Anthiny novel....
posted by GenjiandProust at 2:48 PM on October 27, 2013 [4 favorites]
If you think about it, haunting the shit back into them might be a more ghastly punishment, if a bit like a certain Piers Anthiny novel....
posted by GenjiandProust at 2:48 PM on October 27, 2013 [4 favorites]
The cost can be as cheap as butter and a grow house
THC oil and I'm betting you'll be too mellow to care.
The way to PROFITS! in case you don't like the idea of "natural" and want to make sure the cure has a pharmaceutical company so you feel better. Ya know, the kind of profits that keep The Cancer Center making $ to then give to Republican causes.
posted by rough ashlar at 2:50 PM on October 27, 2013 [1 favorite]
THC oil and I'm betting you'll be too mellow to care.
The way to PROFITS! in case you don't like the idea of "natural" and want to make sure the cure has a pharmaceutical company so you feel better. Ya know, the kind of profits that keep The Cancer Center making $ to then give to Republican causes.
posted by rough ashlar at 2:50 PM on October 27, 2013 [1 favorite]
Gotta love the NHS. You may not get those drugs that can extend your painful life by an extra month but at least you've had a lifetime never having to worry about health insurance.
posted by Brian Lux at 3:01 PM on October 27, 2013 [4 favorites]
posted by Brian Lux at 3:01 PM on October 27, 2013 [4 favorites]
It is unclear how Zaltrap got past clinical trials if it has the same, and not better efficacy than the existing drug. Usually drugs fail trials if they are only as good as current offerings.
This isn't how it works. Drugs don't have to be compared head-to-head with agents from the same drug class. Here's the press release about Zaltrap's approval.
posted by Wordwoman at 3:25 PM on October 27, 2013 [2 favorites]
This isn't how it works. Drugs don't have to be compared head-to-head with agents from the same drug class. Here's the press release about Zaltrap's approval.
posted by Wordwoman at 3:25 PM on October 27, 2013 [2 favorites]
But extending terminal life by a couple months is so important. It's not like it's something unnecessary like replacing our current crop of antibiotics.
I think anyone who is facing certain death would appreciate a few more moments with their loved ones. The desire to stave off death is a major reason why we overuse antibiotics, certainly.
It's interesting though, that, if the article is accurate, there are similarities with our situation with antibiotics, in that cancer drugs are not priced to reflect true cost, because drug companies can get away with naming any price that a captive audience can pay. Antibiotics are not sold to reflect their true cost, because their use inflicts longer-term costs not priced into the business model.
It's almost as if pharmaceutical companies are able to prosper in spite of applying — or, perhaps, because of their ability to apply — almost entirely irrational pricing structures on a captive market.
posted by Blazecock Pileon at 3:26 PM on October 27, 2013 [2 favorites]
I think anyone who is facing certain death would appreciate a few more moments with their loved ones. The desire to stave off death is a major reason why we overuse antibiotics, certainly.
It's interesting though, that, if the article is accurate, there are similarities with our situation with antibiotics, in that cancer drugs are not priced to reflect true cost, because drug companies can get away with naming any price that a captive audience can pay. Antibiotics are not sold to reflect their true cost, because their use inflicts longer-term costs not priced into the business model.
It's almost as if pharmaceutical companies are able to prosper in spite of applying — or, perhaps, because of their ability to apply — almost entirely irrational pricing structures on a captive market.
posted by Blazecock Pileon at 3:26 PM on October 27, 2013 [2 favorites]
I watched my brother-in-law's last few months with metastatic colon cancer. The drugs did nothing but turn him into an empty husk. To be honest, even if they had been free they would have been too expensive for what they did.
posted by tommasz at 3:30 PM on October 27, 2013 [2 favorites]
posted by tommasz at 3:30 PM on October 27, 2013 [2 favorites]
No, to gain the month and a half extension, the drug must be taken for several months along with other chemotherapy drugs -- so you are, in fact, taking the drug for a year to gain that month and a half over not taking the drug.
I took that into account. The doctor in the article arrives at the $300k via a thought experiment where the drugs extend life for 12 months, and so you're taking them for the initial half year for efficacy plus an additional 12 months of life.
The article then explains that people don't live another 12 months on these drugs, so the cost is for the initial course plus a 1 month of life extension, rather than the $300k that was based on the initial course plus a 12 month life extension.
The above numbers are handwavy, but the article goes into the details.
posted by zippy at 3:42 PM on October 27, 2013
I took that into account. The doctor in the article arrives at the $300k via a thought experiment where the drugs extend life for 12 months, and so you're taking them for the initial half year for efficacy plus an additional 12 months of life.
The article then explains that people don't live another 12 months on these drugs, so the cost is for the initial course plus a 1 month of life extension, rather than the $300k that was based on the initial course plus a 12 month life extension.
The above numbers are handwavy, but the article goes into the details.
posted by zippy at 3:42 PM on October 27, 2013
Relevant excerpt from page one:
If you extended the 42 days survival to a year, “what is the cost of Avastin for one year of human life saved?”
The answer was astounding, even to doctors who have grown inured to the zero-gravity economics of cancer pharmaceuticals. As Saltz worked his way through slide 73 of 78, he arrived at the bottom line: $303,000.
posted by zippy at 3:43 PM on October 27, 2013
If you extended the 42 days survival to a year, “what is the cost of Avastin for one year of human life saved?”
The answer was astounding, even to doctors who have grown inured to the zero-gravity economics of cancer pharmaceuticals. As Saltz worked his way through slide 73 of 78, he arrived at the bottom line: $303,000.
posted by zippy at 3:43 PM on October 27, 2013
If I had one of these cancers I would very seriously be considering the non-insurance-covered costs of a one-way flight to San Francisco, BART and bus fare to the visitor's center, and a walk half-way across the Golden Gate Bridge.
posted by localroger at 3:45 PM on October 27, 2013
posted by localroger at 3:45 PM on October 27, 2013
there are similarities with our situation with antibiotics,
Not at all.
Dr. Arjun Srinivasan: We’ve Reached “The End of Antibiotics, Period”
posted by rough ashlar at 3:45 PM on October 27, 2013 [1 favorite]
Not at all.
Dr. Arjun Srinivasan: We’ve Reached “The End of Antibiotics, Period”
posted by rough ashlar at 3:45 PM on October 27, 2013 [1 favorite]
That was both terrifying (about the costs for short extensions of life) and heartening (about the doctor revolt). I would love to see some numbers run for top-line drugs for chronic conditions, which is another area with sticker shock for patients, and one where the drug commitment can be for years or decades.
posted by immlass at 3:46 PM on October 27, 2013
posted by immlass at 3:46 PM on October 27, 2013
Chemo drugs are great, up to a point. If you catch something early enough that drugs will be effective in preventing metastasis or inducing remission, they're totally worth the indiscriminate damage they deal to your body that largely only works at killing the cancer faster than you because the cancerous cells divide faster than normal cells. We've got some half decent anti-nausea meds now, and there's always the marijuana, so people can get through it with some palliative care for the side effects and likely have a reasonably long life.
Once it gets to the late stage, though, there's little to be done. We try and try, but the patients' bodies are already so weak that the cancer drugs essentially kill them, painfully. It's little better than giving them an overdose of morphine as far as the end result goes. It's definitely less humane than the morphine.
It doesn't help that it is alarmingly common in the US, anyway, for people to refuse to confront mortality, especially when it comes to loved ones. Some refuse to even examine their own mortality, but more refuse to consider the quality of life of their stricken loved one, instead hanging on to increasingly fanciful hopes that almost never come true because they can't come to terms with the loss in the completely stressful and insane situation that comes along with end of life care. Until people confront these issues before they arise rather than waiting until it becomes impossible to avoid any longer people will continue to make choices that seem quite rational when in the throes of worry, grief, and potential loss but are actually really dumb and cruel when viewed with some distance.
I have seen this over and over again in my family with all manner of different illnesses, but always the same result of dragging people's lives on beyond the point of any hope. It's getting marginally better with each go-round, but only just. Every time the line is drawn a little bit closer to dignity, but nobody seems to realize that the line is actually far short of where most people are willing to let go.
posted by wierdo at 4:18 PM on October 27, 2013 [9 favorites]
Once it gets to the late stage, though, there's little to be done. We try and try, but the patients' bodies are already so weak that the cancer drugs essentially kill them, painfully. It's little better than giving them an overdose of morphine as far as the end result goes. It's definitely less humane than the morphine.
It doesn't help that it is alarmingly common in the US, anyway, for people to refuse to confront mortality, especially when it comes to loved ones. Some refuse to even examine their own mortality, but more refuse to consider the quality of life of their stricken loved one, instead hanging on to increasingly fanciful hopes that almost never come true because they can't come to terms with the loss in the completely stressful and insane situation that comes along with end of life care. Until people confront these issues before they arise rather than waiting until it becomes impossible to avoid any longer people will continue to make choices that seem quite rational when in the throes of worry, grief, and potential loss but are actually really dumb and cruel when viewed with some distance.
I have seen this over and over again in my family with all manner of different illnesses, but always the same result of dragging people's lives on beyond the point of any hope. It's getting marginally better with each go-round, but only just. Every time the line is drawn a little bit closer to dignity, but nobody seems to realize that the line is actually far short of where most people are willing to let go.
posted by wierdo at 4:18 PM on October 27, 2013 [9 favorites]
My brother had just over a month from diagnosis to death from pancreatic cancer. Better heath care, and an earlier diagnosis would have given him some time to try to beat the cancer, a fight he wanted to engage in. A little more time to say goodbye to family and friends would have been nice. But it's hard not to believe that he was mercifully spared a lot worse suffering from radiation, and chemotherapy. Not all cancer treatment is pointless; there are more and more people surviving cancers, with or without lasting side effects.
The US health/disease care system has been co-opted by the for-profit sector, and this is just one glaring example. Part of the Affordable Care Act is an effort to reduce the expenses of care, which means reducing the profit, which is why the fight against it is so bitter and savage.
posted by Mom at 4:20 PM on October 27, 2013 [3 favorites]
The US health/disease care system has been co-opted by the for-profit sector, and this is just one glaring example. Part of the Affordable Care Act is an effort to reduce the expenses of care, which means reducing the profit, which is why the fight against it is so bitter and savage.
posted by Mom at 4:20 PM on October 27, 2013 [3 favorites]
The danger we are in from increasing antibiotic resistant diseases is really serious. But the meat industry is a big, powerful lobby. US politics screws us again.
posted by Mom at 4:22 PM on October 27, 2013 [2 favorites]
posted by Mom at 4:22 PM on October 27, 2013 [2 favorites]
Chemo drugs are great, up to a point.
I saw my father go through chemo, and if I get a cancer diagnosis I'm going to refuse treatment.
My advance directive is basically 'if it can't be cured with a band-aid, let me die'.
posted by winna at 4:34 PM on October 27, 2013 [3 favorites]
I saw my father go through chemo, and if I get a cancer diagnosis I'm going to refuse treatment.
My advance directive is basically 'if it can't be cured with a band-aid, let me die'.
posted by winna at 4:34 PM on October 27, 2013 [3 favorites]
I feel like the most interesting part of this article is buried way at the end.
To me, the real problem is our failure to educate people about the lackluster results from most of these drugs. I see patients all the time with relapsed cancer who are incredibly hopeful about some new drug the oncologist is going to try since the first treatment failed, and they never seem to understand that the drug has a 0% chance of curing them, often a 0% chance of even getting them to next year. Oncologists have a ridiculously hard job, trying to walk the line between cruel honesty and false optimism when they discuss prognosis with patients. Even in a healthcare culture that values honest end-of-life discussions, there's still this sense that we have to somehow maintain a patient's hope. That leads to a lack of clarity when we tell them about the costs and benefits of further treatment. A lot of times the situation really is hopeless, if prolonged survival is your primary goal.
I don't know what the answer is. Maybe we all need to be better about seeing the hope in a good death, in enjoying as much as possible in the time we have left rather than fighting til the end. Choosing not to pursue further treatment isn't quitting or giving up, and it doesn't have to mean we've given up hope. It just means that what we're hoping for has shifted. Rationally most of us who work in oncology know that, but emotionally it can be really hard.
posted by vytae at 4:36 PM on October 27, 2013 [8 favorites]
“There is a number in people’s minds,” he says. “If you say to people, ‘I have a drug that extends life by one day at a billion dollars; shouldn’t we as a society pay for it?,’ I’m pretty confident most people would say no. If I say, ‘I have a drug that extends life by three years at a cost of $1.50,’ I’m pretty confident everybody would say, ‘Of course!’ Somewhere in there is a number, a tipping point, where we say, ‘No, we can’t.’ Right now, we’re unwilling as a society to explore where that point is. And I would argue that we have to. Wherever it may be, we have to find it.”How do we get people into a mindset where they can engage rationally in that discussion? I'm sure each person would draw the line in a slightly different place, but it's still a really important topic that just gets shut down by cries about "death panels" and the like.
To me, the real problem is our failure to educate people about the lackluster results from most of these drugs. I see patients all the time with relapsed cancer who are incredibly hopeful about some new drug the oncologist is going to try since the first treatment failed, and they never seem to understand that the drug has a 0% chance of curing them, often a 0% chance of even getting them to next year. Oncologists have a ridiculously hard job, trying to walk the line between cruel honesty and false optimism when they discuss prognosis with patients. Even in a healthcare culture that values honest end-of-life discussions, there's still this sense that we have to somehow maintain a patient's hope. That leads to a lack of clarity when we tell them about the costs and benefits of further treatment. A lot of times the situation really is hopeless, if prolonged survival is your primary goal.
I don't know what the answer is. Maybe we all need to be better about seeing the hope in a good death, in enjoying as much as possible in the time we have left rather than fighting til the end. Choosing not to pursue further treatment isn't quitting or giving up, and it doesn't have to mean we've given up hope. It just means that what we're hoping for has shifted. Rationally most of us who work in oncology know that, but emotionally it can be really hard.
posted by vytae at 4:36 PM on October 27, 2013 [8 favorites]
winna: "I saw my father go through chemo, and if I get a cancer diagnosis I'm going to refuse treatment."
I don't know, my grandpa ended up with some cancer or another that I can't recall at the moment (but not lung cancer, despite him being a lifelong smoker), went on chemo for 3 or 6 months and got a few extra years of puttering around the garden and working in the shop before he got too weak to do those things. They tried chemo again as the cancer was making a comeback and it failed to do anything but make him feel worse. The first round was everything you would hope it to be, discounting the side effects, of course. It was only after a few years of slow decline that the second round did more damage to him it did the disease.
If the cancer isn't detected until it's firmly established and metastasized, though, it is indeed a complete and 100% waste of what little decent life a person with that diagnosis has left. Basically, I'm saying it's not all bad, even if most of the new drugs are overpriced shit.
posted by wierdo at 4:44 PM on October 27, 2013
I don't know, my grandpa ended up with some cancer or another that I can't recall at the moment (but not lung cancer, despite him being a lifelong smoker), went on chemo for 3 or 6 months and got a few extra years of puttering around the garden and working in the shop before he got too weak to do those things. They tried chemo again as the cancer was making a comeback and it failed to do anything but make him feel worse. The first round was everything you would hope it to be, discounting the side effects, of course. It was only after a few years of slow decline that the second round did more damage to him it did the disease.
If the cancer isn't detected until it's firmly established and metastasized, though, it is indeed a complete and 100% waste of what little decent life a person with that diagnosis has left. Basically, I'm saying it's not all bad, even if most of the new drugs are overpriced shit.
posted by wierdo at 4:44 PM on October 27, 2013
Hubby and I rode the boat of hopeful denial.... surely, the next treatment would be the one that worked! He was young and never sick before plus 100% positive in a favorable outcome. We never seriously planned for the negative possibility.
There was only slight hint at an unfavorable result near the end, yet I'm only left with medical bills, mental disarray and self recrimination.
We, like others, were ready to mortgage our future on any possible positive outcome and our physicians were quite willing to take that risk too. Success would have been priceless to us and perhaps the medical industry feeds that beast all to willingly.
posted by mightshould at 4:55 PM on October 27, 2013 [15 favorites]
There was only slight hint at an unfavorable result near the end, yet I'm only left with medical bills, mental disarray and self recrimination.
We, like others, were ready to mortgage our future on any possible positive outcome and our physicians were quite willing to take that risk too. Success would have been priceless to us and perhaps the medical industry feeds that beast all to willingly.
posted by mightshould at 4:55 PM on October 27, 2013 [15 favorites]
It's interesting to see people make the comparison between this story and the story about antibiotics. The connection that I saw between the two is that they both address conflicts between medicine and public health. This is not my area of expertise but as I understand it, medicine relates to a person as an individual while public health is more about society as a whole.
When my husband asked me about the antibiotics story, I said that he should worry about it from a public health perspective but not an individual perspective because the odds that he personally will be affected by something awful like MRSA are increasing but still slim. Likewise, if one person were to be treated with a drug that costs $100,000 annually, Medicare/Medicaid wouldn't be devastating to the system but when thousands of people want the drug that costs $100,000 a year, it's a huge problem.
posted by kat518 at 5:53 PM on October 27, 2013
When my husband asked me about the antibiotics story, I said that he should worry about it from a public health perspective but not an individual perspective because the odds that he personally will be affected by something awful like MRSA are increasing but still slim. Likewise, if one person were to be treated with a drug that costs $100,000 annually, Medicare/Medicaid wouldn't be devastating to the system but when thousands of people want the drug that costs $100,000 a year, it's a huge problem.
posted by kat518 at 5:53 PM on October 27, 2013
but it's still a really important topic that just gets shut down by cries about "death panels" and the like.
I heard the leader of the New York Death Cafe speak once. She said that "death is the new sex". By that, she meant that death is a topic that is pervasive in people's lives, yet it is so taboo that we're unable to acknowledge it or talk about it in anything but the most grazing of euphemisms... much in the same way sex was treated before the 60s.
posted by the jam at 5:55 PM on October 27, 2013 [6 favorites]
I heard the leader of the New York Death Cafe speak once. She said that "death is the new sex". By that, she meant that death is a topic that is pervasive in people's lives, yet it is so taboo that we're unable to acknowledge it or talk about it in anything but the most grazing of euphemisms... much in the same way sex was treated before the 60s.
posted by the jam at 5:55 PM on October 27, 2013 [6 favorites]
A few years ago, scientists at the Thousand Oaks biotech firm Amgen set out to double-check the results of 53 landmark papers in their fields of cancer research and blood biology. But what they found was startling: Of the 53 landmark papers, only six could be proved valid.
posted by rough ashlar at 6:28 PM on October 27, 2013 [3 favorites]
posted by rough ashlar at 6:28 PM on October 27, 2013 [3 favorites]
My son in law died of cancer after a long fight. For almost a year he was bed ridden and in great pain.
I wondered if snipping his spinal cord above the cancerous mass would stop the pain.
posted by wrapper at 6:29 PM on October 27, 2013
I wondered if snipping his spinal cord above the cancerous mass would stop the pain.
posted by wrapper at 6:29 PM on October 27, 2013
winna: I saw my father go through chemo, and if I get a cancer diagnosis I'm going to refuse treatment.
Huh? That's an incredibly extreme position to take. My grandmother went through chemo in the early 80s, and lived another 25 years. My best friend was diagnosed in 1999 (age 30, for fuck's sake), did chemo and radiation, and is alive, well, and cancer-free today. I'm sorry your father suffered, but a significant number of cancers are entirely survivable with treatment--certainly way more now than ever before.
posted by tzikeh at 7:33 PM on October 27, 2013 [6 favorites]
Huh? That's an incredibly extreme position to take. My grandmother went through chemo in the early 80s, and lived another 25 years. My best friend was diagnosed in 1999 (age 30, for fuck's sake), did chemo and radiation, and is alive, well, and cancer-free today. I'm sorry your father suffered, but a significant number of cancers are entirely survivable with treatment--certainly way more now than ever before.
posted by tzikeh at 7:33 PM on October 27, 2013 [6 favorites]
The terrible irony is that the uninsured pay the most for prescriptions (assuming they could even cobble together the money for chemo) and - other than giving the drugs away - it is actually against the law for the manufacturers to discount below a certain point for the uninsured. How jacked is that?
posted by jason says at 9:05 PM on October 27, 2013 [6 favorites]
posted by jason says at 9:05 PM on October 27, 2013 [6 favorites]
Winna, cancer is a catch-all term for a whole lot of different diseases with wholly different treatments. I have a type of cancer that's never treated with chemo (surgery and radionuclides, not antineoplastics, bring disease under control). I really understand being scarred by what a parent goes through at end of life, but I think the "bandaid" approach is a bit over-broad.
Ya know, the kind of profits that keep The Cancer Center making $ to then give to Republican causes.
You are confusing (bad) cancer charities (like Komen) with Cancer Centers. NCI-designated CCs have to be either at an institution of higher education, or at a nonprofit organization. So they don't donate to anyone's campaign or causes.
posted by gingerest at 10:19 PM on October 27, 2013
Ya know, the kind of profits that keep The Cancer Center making $ to then give to Republican causes.
You are confusing (bad) cancer charities (like Komen) with Cancer Centers. NCI-designated CCs have to be either at an institution of higher education, or at a nonprofit organization. So they don't donate to anyone's campaign or causes.
posted by gingerest at 10:19 PM on October 27, 2013
Not at all.
What I meant was that we don't pay the true cost for medicine. No one wants to die, and in the end, to someone who is dying, money is just weird paper. If you have it, you might get to eke out a little more existence with better care, but there are no guarantees. And we don't pay the true costs for either antibiotics or cancer medicines because, again, no one really wants to die from an infection or a tumor, but if you're lucky enough to have these weird bits of green paper, you might get to live a bit longer. The pricing for antibiotics doesn't reflect their overuse, but their demand by the sick. Likewise, the pricing for cancer medicines doesn't reflect the "parts or labor" for manufacturing and administering the drug, but simply what drug companies can get away with in a regulatory vacuum. How do you put a dollar value on an uncertain bit more life, anyway? I'm not sure there are easy answers to this, when faced with the prospect of a loved one meeting their end, when healthcare is rationed to begin with.
posted by Blazecock Pileon at 10:30 PM on October 27, 2013
What I meant was that we don't pay the true cost for medicine. No one wants to die, and in the end, to someone who is dying, money is just weird paper. If you have it, you might get to eke out a little more existence with better care, but there are no guarantees. And we don't pay the true costs for either antibiotics or cancer medicines because, again, no one really wants to die from an infection or a tumor, but if you're lucky enough to have these weird bits of green paper, you might get to live a bit longer. The pricing for antibiotics doesn't reflect their overuse, but their demand by the sick. Likewise, the pricing for cancer medicines doesn't reflect the "parts or labor" for manufacturing and administering the drug, but simply what drug companies can get away with in a regulatory vacuum. How do you put a dollar value on an uncertain bit more life, anyway? I'm not sure there are easy answers to this, when faced with the prospect of a loved one meeting their end, when healthcare is rationed to begin with.
posted by Blazecock Pileon at 10:30 PM on October 27, 2013
As long as the rich can extend their precious lives one extra day, we should all pay into insurance policies that promote this.
But damn if the poor should have health care that allows them early detection and care, because "fuck you, I got mine."
posted by BlueHorse at 10:31 PM on October 27, 2013 [1 favorite]
But damn if the poor should have health care that allows them early detection and care, because "fuck you, I got mine."
posted by BlueHorse at 10:31 PM on October 27, 2013 [1 favorite]
Just a heads up for people who are reporting family members who had colon cancer (or even other cancers) at an unusually young age:
You may want to ask your doctor about/look into Lynch Syndrome/HNPCC.
It's a condition which dramatically increases rates of colon cancer, as well as a variety of other cancers. My sister had colon cancer, but thankfully survived, at the age of 21. Because of what happened to my sister, I was able to be tested and confirmed as a carrier of the relevant gene.
It's a harsh reality, but there are things that can be done about it. I've seen estimates of the incidence of Lynch among the general population as high as 1 in 500, which is to say it isn't uncommon. Early detection is still the best tool in the fight against cancer, and when detected, colon cancer is thankfully very treatable.
posted by Alex404 at 1:46 AM on October 28, 2013 [2 favorites]
You may want to ask your doctor about/look into Lynch Syndrome/HNPCC.
It's a condition which dramatically increases rates of colon cancer, as well as a variety of other cancers. My sister had colon cancer, but thankfully survived, at the age of 21. Because of what happened to my sister, I was able to be tested and confirmed as a carrier of the relevant gene.
It's a harsh reality, but there are things that can be done about it. I've seen estimates of the incidence of Lynch among the general population as high as 1 in 500, which is to say it isn't uncommon. Early detection is still the best tool in the fight against cancer, and when detected, colon cancer is thankfully very treatable.
posted by Alex404 at 1:46 AM on October 28, 2013 [2 favorites]
You are confusing (bad) cancer charities (like Komen) with Cancer Centers. NCI-designated CCs have to be either at an institution of higher education, or at a nonprofit organization. So they don't donate to anyone's campaign or causes.
I believe they're talking about these people who advertise on the television.
posted by hoyland at 5:05 AM on October 28, 2013
I believe they're talking about these people who advertise on the television.
posted by hoyland at 5:05 AM on October 28, 2013
A story just popped up in my Twitter feed today about this: Ontario's public system, OHIP, won't cover the cost of Avastin (the cheaper of the two drugs mentioned in the NY Magazine article) in cases of brain cancer. Interestingly, the story says doctors told the woman Avastin could extend her life by a year or more, which doesn't directly contradict the NY Magazine claim of a median life expectancy of 42 more days.
posted by chrominance at 5:55 AM on October 28, 2013
posted by chrominance at 5:55 AM on October 28, 2013
the pricing for cancer medicines doesn't reflect the "parts or labor" for manufacturing and administering the drug
That's not entirely true. Avastin, for example, is a monoclonal antibody. Its production is not a straightforward chemical process; rather, the product must be produced by live cells in a bioreactor, purified, packaged, and shipped. Like most proteins, monoclonal antibodies are very sensitive to temperature, pH, and so on.
That said, Avastin is still substantially more expensive than it could be. Avastin's patent expires in about five years. So, generic Avastin - yay! No.
One of the tricky things with drugs like Avastin or Enbrel or Remicade—drugs classified as biologics because they are produced by or extracted from living cells—is that it is literally impossible to replicate the conditions and high-order chemical structure and folding of such products, short of seizing the cell lines and bioreactors used in manufacture of the original product. So, under a mandate from the Affordable Care Act (ObamaCare), a new designation of 'biosimilar' was created—biosimilars are as close to 'generic' biologics as we're going to get. But again, they are NOT generic biologics in the way that atorvastatin is generic Lipitor.
FDA recognizes this, and its 'biosimilar pathway' requires fairly rigorous testing, which may include clinical trials. At which point, you're really looking more like a second entry into the class, not a 'generic' version of anything.
All of this stuff, as you may guess, is very expensive, meaning that biosimilars will come at a discount to the innovator product, but not the 60-80% we see with many generics. Think more like 20-30%, which is real money, but not cheap by any means.
posted by Mister_A at 7:13 AM on October 28, 2013 [6 favorites]
That's not entirely true. Avastin, for example, is a monoclonal antibody. Its production is not a straightforward chemical process; rather, the product must be produced by live cells in a bioreactor, purified, packaged, and shipped. Like most proteins, monoclonal antibodies are very sensitive to temperature, pH, and so on.
That said, Avastin is still substantially more expensive than it could be. Avastin's patent expires in about five years. So, generic Avastin - yay! No.
One of the tricky things with drugs like Avastin or Enbrel or Remicade—drugs classified as biologics because they are produced by or extracted from living cells—is that it is literally impossible to replicate the conditions and high-order chemical structure and folding of such products, short of seizing the cell lines and bioreactors used in manufacture of the original product. So, under a mandate from the Affordable Care Act (ObamaCare), a new designation of 'biosimilar' was created—biosimilars are as close to 'generic' biologics as we're going to get. But again, they are NOT generic biologics in the way that atorvastatin is generic Lipitor.
FDA recognizes this, and its 'biosimilar pathway' requires fairly rigorous testing, which may include clinical trials. At which point, you're really looking more like a second entry into the class, not a 'generic' version of anything.
All of this stuff, as you may guess, is very expensive, meaning that biosimilars will come at a discount to the innovator product, but not the 60-80% we see with many generics. Think more like 20-30%, which is real money, but not cheap by any means.
posted by Mister_A at 7:13 AM on October 28, 2013 [6 favorites]
The article in the original post mentions in passing a drug for cystic fibrosis; that drug (Kalydeco, I am assuming) and the fact that its price has remained high while Zaltrap has (sort of) been discounted are discussed in detail here. There is a good bit of overlap with the article in the FPP but some additional background as well.
This is pretty relevant to me because I am dating someone who has had metastatic colon cancer. She actually got some of her treatment at Sloan-Kettering (intraperitoneal chemotherapy, for one thing) and has done amazingly well. She is doing very well since her last surgery and is now over a year tumor free according to all the imaging studies. Of course what the future holds will always be a concern, but even if she had a recurrence tomorrow the amount and quality of life thus far is testament to the potential of modern cancer treatment.
On the other hand, she still has to take maintenance chemo almost daily and has taken a huge hit financially. Even though she would like to go back to work the way health insurance works means that she would lose her disability payments that are the only way she can afford her treatment. Health care in the US (and cancer care in particular) is full of perverse financial incentives for everyone.
posted by TedW at 9:47 AM on October 28, 2013 [2 favorites]
This is pretty relevant to me because I am dating someone who has had metastatic colon cancer. She actually got some of her treatment at Sloan-Kettering (intraperitoneal chemotherapy, for one thing) and has done amazingly well. She is doing very well since her last surgery and is now over a year tumor free according to all the imaging studies. Of course what the future holds will always be a concern, but even if she had a recurrence tomorrow the amount and quality of life thus far is testament to the potential of modern cancer treatment.
On the other hand, she still has to take maintenance chemo almost daily and has taken a huge hit financially. Even though she would like to go back to work the way health insurance works means that she would lose her disability payments that are the only way she can afford her treatment. Health care in the US (and cancer care in particular) is full of perverse financial incentives for everyone.
posted by TedW at 9:47 AM on October 28, 2013 [2 favorites]
Mister_A: "One of the tricky things with drugs like Avastin or Enbrel or Remicade—drugs classified as biologics because they are produced by or extracted from living cells—is that it is literally impossible to replicate the conditions and high-order chemical structure and folding of such products, short of seizing the cell lines and bioreactors used in manufacture of the original product."
Um, if the patents for these drugs don't actually describe the invention in specific enough detail to reproduce it, why was the patent allowed in the first place? The fundamental social exchange underlying the patent system is that inventors must disclose their inventions completely and in full, and in exchange we give them temporary exclusivity.
If inventors aren't holding up their end of the bargain, patents should not issue.
posted by wierdo at 2:04 PM on October 28, 2013
Um, if the patents for these drugs don't actually describe the invention in specific enough detail to reproduce it, why was the patent allowed in the first place? The fundamental social exchange underlying the patent system is that inventors must disclose their inventions completely and in full, and in exchange we give them temporary exclusivity.
If inventors aren't holding up their end of the bargain, patents should not issue.
posted by wierdo at 2:04 PM on October 28, 2013
I believe they're talking about these people who advertise on the television.
Oh, ew. Those creepy, for-profit fraudsters. Yeah, they'd be all over Zaltrap, since they hate evidence. Mind, they provide plenty of ineffective "natural" alternatives to make sure they cover their bases and strip every available penny from the desperate. (Oh, look, they even boast about a survivor they turned on to laetrile, ineffective as an antineoplastic but poisoning and killing people since the late 1970s, thanks to its metabolism to cyanide.)
posted by gingerest at 9:06 PM on October 28, 2013
Oh, ew. Those creepy, for-profit fraudsters. Yeah, they'd be all over Zaltrap, since they hate evidence. Mind, they provide plenty of ineffective "natural" alternatives to make sure they cover their bases and strip every available penny from the desperate. (Oh, look, they even boast about a survivor they turned on to laetrile, ineffective as an antineoplastic but poisoning and killing people since the late 1970s, thanks to its metabolism to cyanide.)
posted by gingerest at 9:06 PM on October 28, 2013
Their respective patents do describe the production of biologic products in great detail, but because of the way biological systems and macromolecules work, it is impossible to precisely duplicate the product. And those small variations can lead to different efficacy and side effect profiles. For instance, omission of a carbohydrate moiety may lead the patient to begin misguided statements with a condescending "Um..."
posted by Mister_A at 10:52 AM on October 29, 2013 [1 favorite]
posted by Mister_A at 10:52 AM on October 29, 2013 [1 favorite]
If only we could figure out what it is that prevents people from having difficulty with reading comprehension...
posted by wierdo at 5:33 AM on November 1, 2013
posted by wierdo at 5:33 AM on November 1, 2013
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