Sorry, you're not sick enough.
April 25, 2016 4:14 PM Subscribe
The avalanche of direct acting antivirals (DAAs) for hepatitis C has revolutionized therapy. Treatment regimens based on these drugs have resulted in cure rates of 95+% with minimal toxicity, particularly as compared to the interferon-based regimens.
Although varying in mechanism, the drugs all share a common feature - record breaking costs that prevent most patients from being treated.
The commonly used Harvoni (sofosbuvir/ledipasvir) runs over $1000 a pill so that a typical 12 week course is over $95,000. Combine that with the estimated 14+ million HCV positive persons in the US and we're talking about over a trillion dollars for treatment of one disease. State Medicaid programs and the VA see a multibillion dollar hole blown in their budgets, with no extra dollars comming from Congress or state legislatures, so they have restricted access to the medications. Private insurers have also seen a severe threat to their profits and the bonuses of their CEOs. The response has been to restrict the availability of these drugs completely ("not on the formulary"), to approve use only for the subset of patients with established cirrhosis, contrary to the current recommendations, and to demand co-pays and deductibles of 30-50%.
Currently, the majority of patients with HCV who have treatment recommended by specialists are denied therapy because they are not "sick enough" (and on the hope that, when they do become sick enough, they might will be on the dime of another insurer or a public program). There are now a number of lawsuits against insurers and Medicaid programs for denial of care, including one just filed by the NY Attorney General against Anthem, whose CEO made a paltry $13.5 million in 2014.
The latest wrinkle is gray market Harvoni. Pharmaceutical companies in India have begun manufacturing generic Harvoni for their own internal market and those of 90 other poor countries at reduced costs. Many patients are turning to purchasing the meds from these overseas sources. Natco Pharmaceuticals' licensed Harvoni clone from India can be purchased for about $3000, including shipping, for the 12 week course - roughly 30 times less than the US product. This is likely illegal, and runs the risk of counterfeit medications and internet scams as have been reported for other medications. However, the practice is increasing rapidly out of the desperation of many patients.
The commonly used Harvoni (sofosbuvir/ledipasvir) runs over $1000 a pill so that a typical 12 week course is over $95,000. Combine that with the estimated 14+ million HCV positive persons in the US and we're talking about over a trillion dollars for treatment of one disease. State Medicaid programs and the VA see a multibillion dollar hole blown in their budgets, with no extra dollars comming from Congress or state legislatures, so they have restricted access to the medications. Private insurers have also seen a severe threat to their profits and the bonuses of their CEOs. The response has been to restrict the availability of these drugs completely ("not on the formulary"), to approve use only for the subset of patients with established cirrhosis, contrary to the current recommendations, and to demand co-pays and deductibles of 30-50%.
Currently, the majority of patients with HCV who have treatment recommended by specialists are denied therapy because they are not "sick enough" (and on the hope that, when they do become sick enough, they might will be on the dime of another insurer or a public program). There are now a number of lawsuits against insurers and Medicaid programs for denial of care, including one just filed by the NY Attorney General against Anthem, whose CEO made a paltry $13.5 million in 2014.
The latest wrinkle is gray market Harvoni. Pharmaceutical companies in India have begun manufacturing generic Harvoni for their own internal market and those of 90 other poor countries at reduced costs. Many patients are turning to purchasing the meds from these overseas sources. Natco Pharmaceuticals' licensed Harvoni clone from India can be purchased for about $3000, including shipping, for the 12 week course - roughly 30 times less than the US product. This is likely illegal, and runs the risk of counterfeit medications and internet scams as have been reported for other medications. However, the practice is increasing rapidly out of the desperation of many patients.
Many of the patients at the urban emergency department where I work can't even afford over-the-counter ibuprofen. They come back over and over again for our freebie NSAIDs... a lot of them have Hep C, and needless to say it will be a cold day in Hell before they can afford treatment for it.
posted by killdevil at 4:30 PM on April 25, 2016 [2 favorites]
posted by killdevil at 4:30 PM on April 25, 2016 [2 favorites]
Paging Dr. Marx. Dr. Marx, please pick up a red courtesy phone.
posted by schmod at 4:35 PM on April 25, 2016 [8 favorites]
posted by schmod at 4:35 PM on April 25, 2016 [8 favorites]
Illinois (chicago?) seems to be doing a good job with more severe cases, on medicaid oddly enough. I can name a few people who have gotten the treatment.
Though there could be some public health federal funding going to it right now, I can't say because I hadn't looked into it much.
I know that the PrEP (for those without HIV who engagein risky behaviors)initiatives are being funded through IDPH.
posted by AlexiaSky at 4:49 PM on April 25, 2016 [1 favorite]
Though there could be some public health federal funding going to it right now, I can't say because I hadn't looked into it much.
I know that the PrEP (for those without HIV who engagein risky behaviors)initiatives are being funded through IDPH.
posted by AlexiaSky at 4:49 PM on April 25, 2016 [1 favorite]
This is likely illegal, and runs the risk of counterfeit medications and internet scams as have been reported for other medications.
I would love to see some hard, or even sort of firm numbers on this. Hell, i'd even like to see someone like Vice order pills from 5 or 6 different sites and get them tested.
Something tells me, that like a lot of other artificially high priced products Vs raw manufacturing cost or even total brain-to-door costs, this is vastly exaggerated and the cheap generic is very close.
Which sort of begs the question, where's the startup that powers through the FDA approval process for this stuff and then sells it for half the price of the "real" one? That's still a lot of money laying on the table, even if isn't the absolute maximum amount... Or did i just answer my own question? Fuck, if they can sell it for $3000 even a $10,000 version would just be a free money factory and way less ridiculous.
posted by emptythought at 4:52 PM on April 25, 2016 [4 favorites]
I would love to see some hard, or even sort of firm numbers on this. Hell, i'd even like to see someone like Vice order pills from 5 or 6 different sites and get them tested.
Something tells me, that like a lot of other artificially high priced products Vs raw manufacturing cost or even total brain-to-door costs, this is vastly exaggerated and the cheap generic is very close.
Which sort of begs the question, where's the startup that powers through the FDA approval process for this stuff and then sells it for half the price of the "real" one? That's still a lot of money laying on the table, even if isn't the absolute maximum amount... Or did i just answer my own question? Fuck, if they can sell it for $3000 even a $10,000 version would just be a free money factory and way less ridiculous.
posted by emptythought at 4:52 PM on April 25, 2016 [4 favorites]
Which sort of begs the question, where's the startup that powers through the FDA approval process for this stuff and then sells it for half the price of the "real" one?Wouldn't they be sued for violating patents and immediately put out of business? The reason you can get the drugs from India is that India has set up its patent legislation basically to ignore the ridiculous claims of US drug companies.
posted by ArbitraryAndCapricious at 5:01 PM on April 25, 2016 [22 favorites]
Something tells me, that like a lot of other artificially high priced products Vs raw manufacturing cost or even total brain-to-door costs, this is vastly exaggerated and the cheap generic is very close.
Most of the expense is amortized cost of research, development and testing. The FDA specializes in throwing roadblocks in the way of drug development, and doing all the tests the FDA requires can run into hundreds of millions of dollars.
That money has to come from somewhere.
posted by Chocolate Pickle at 5:58 PM on April 25, 2016 [4 favorites]
Most of the expense is amortized cost of research, development and testing. The FDA specializes in throwing roadblocks in the way of drug development, and doing all the tests the FDA requires can run into hundreds of millions of dollars.
That money has to come from somewhere.
posted by Chocolate Pickle at 5:58 PM on April 25, 2016 [4 favorites]
The FDA specializes in throwing roadblocks in the way of drug development
Except for those times when they work with big pharma to bring dangerous drugs into the market, sure.
For instance:
Diabetes Drug Maker Hid Test Data, Files Indicate
In the deposition, Dr. Rosemary Johann-Liang, a former supervisor in the drug safety office who left the F.D.A. after she was disciplined for recommending that Avandia’s heart warnings be strengthened, said of Dr. Jenkins’ conversations with GlaxoSmithKline, “This should not happen, and the fact that these kind of things happen, I mean, I think people have to make a determination about the leadership at the F.D.A.”
An F.D.A. spokeswoman said the agency would not comment on the contents of the deposition.
And before that, there was the Vioxx scandal:
F.D.A. Official Admits 'Lapses' on Vioxx
Dr. Kweder said the agency took too long to get information about Vioxx's heart risks into the prescribing label that is provided to physicians. More than a year passed between an advisory panel's conclusion that those risks should be highlighted and the label changes, she said.
Dr. Kweder blamed difficult negotiations with Vioxx's maker, Merck, for the delay. "We don't have the authority to tell a company, 'This is how your label has to look,"' she said. "We have to negotiate with the company the specific language of how things should be worded, the placement, those kinds of things, after talking to them."
Roadblocks, negotiations, it's all the same. At least they managed to get "swill milk" and formaldehyde off the menu!
When you have the government put a drug industry-paid researcher in charge of the FDA, these are the sorts of deals or synergistic partnerships you can expect much more of over the coming decades.
So it goes.
posted by a lungful of dragon at 6:23 PM on April 25, 2016 [10 favorites]
Except for those times when they work with big pharma to bring dangerous drugs into the market, sure.
For instance:
Diabetes Drug Maker Hid Test Data, Files Indicate
In the deposition, Dr. Rosemary Johann-Liang, a former supervisor in the drug safety office who left the F.D.A. after she was disciplined for recommending that Avandia’s heart warnings be strengthened, said of Dr. Jenkins’ conversations with GlaxoSmithKline, “This should not happen, and the fact that these kind of things happen, I mean, I think people have to make a determination about the leadership at the F.D.A.”
An F.D.A. spokeswoman said the agency would not comment on the contents of the deposition.
And before that, there was the Vioxx scandal:
F.D.A. Official Admits 'Lapses' on Vioxx
Dr. Kweder said the agency took too long to get information about Vioxx's heart risks into the prescribing label that is provided to physicians. More than a year passed between an advisory panel's conclusion that those risks should be highlighted and the label changes, she said.
Dr. Kweder blamed difficult negotiations with Vioxx's maker, Merck, for the delay. "We don't have the authority to tell a company, 'This is how your label has to look,"' she said. "We have to negotiate with the company the specific language of how things should be worded, the placement, those kinds of things, after talking to them."
Roadblocks, negotiations, it's all the same. At least they managed to get "swill milk" and formaldehyde off the menu!
When you have the government put a drug industry-paid researcher in charge of the FDA, these are the sorts of deals or synergistic partnerships you can expect much more of over the coming decades.
So it goes.
posted by a lungful of dragon at 6:23 PM on April 25, 2016 [10 favorites]
Medicare is prohibited from using it's buying power to negotiate with pharmaceutical companies
What the ever-loving fuck. Sometimes I hate people, and some times I hate people a lot.
posted by filthy light thief at 6:36 PM on April 25, 2016 [26 favorites]
What the ever-loving fuck. Sometimes I hate people, and some times I hate people a lot.
posted by filthy light thief at 6:36 PM on April 25, 2016 [26 favorites]
One of the most memorable moments in my healthcare policy seminar in medical school last month was a lecture from a physician who had worked as a senior executive in a major private health insurance company. She told us that when Harvoni first hit the market, she was entirely unsurprised by the six-figure cost, and asked us how we thought the pharma company decided on that price.
We the students variously piped up with: cover R&D and trials plus a reasonable profit margin? Priced like similar medications on or to be on the market? What the market could bear based on how many patients there were?
It turns out the price of Harvoni wasn't set by any of those factors.
The price of Harvoni is pegged to the equivalent cost of a liver transplant.
posted by demons in the base at 7:03 PM on April 25, 2016 [77 favorites]
We the students variously piped up with: cover R&D and trials plus a reasonable profit margin? Priced like similar medications on or to be on the market? What the market could bear based on how many patients there were?
It turns out the price of Harvoni wasn't set by any of those factors.
The price of Harvoni is pegged to the equivalent cost of a liver transplant.
posted by demons in the base at 7:03 PM on April 25, 2016 [77 favorites]
This makes me see blood. The current medical consensus is that everyone with chronic hep C needs this treatment. Full stop. But because... greed? ... pharmaceutical/insurance companies get to decide? fuuuuuu.
Reasons I wouldn't particularly suggest buying random drugs not prescribed by your doctor (other than you don't know what you're getting):
Hep C treatment is targeted to the genotype of the virus that you have and the algorithms for determining treatment are actually mind boggling. Scroll through this if you want to feel overwhelmed. Depending on mutations, you can have a type that may be resistant to some of the multitude of these direct acting antivirals. You could be resistant, you could breed resistance, etc. I can certainly see the appeal of trying to get these drugs off-market though.
posted by bobobox at 7:08 PM on April 25, 2016 [1 favorite]
Reasons I wouldn't particularly suggest buying random drugs not prescribed by your doctor (other than you don't know what you're getting):
Hep C treatment is targeted to the genotype of the virus that you have and the algorithms for determining treatment are actually mind boggling. Scroll through this if you want to feel overwhelmed. Depending on mutations, you can have a type that may be resistant to some of the multitude of these direct acting antivirals. You could be resistant, you could breed resistance, etc. I can certainly see the appeal of trying to get these drugs off-market though.
posted by bobobox at 7:08 PM on April 25, 2016 [1 favorite]
Most of the expense is amortized cost of research, development and testing.
And marketing. Let us not forget marketing.
posted by praemunire at 7:08 PM on April 25, 2016 [6 favorites]
And marketing. Let us not forget marketing.
posted by praemunire at 7:08 PM on April 25, 2016 [6 favorites]
I can certainly see the appeal of trying to get these drugs off-market though.
"Here's your prescription. As your doctor, I strongly suggest a 12 week vacation in India."
posted by sebastienbailard at 7:21 PM on April 25, 2016 [11 favorites]
"Here's your prescription. As your doctor, I strongly suggest a 12 week vacation in India."
posted by sebastienbailard at 7:21 PM on April 25, 2016 [11 favorites]
I am not here to defend the pharmaceutical industry, nor the wacky, inefficient, terrible way that healthcare is distributed in this country. But, this situation isn't as simple as people make it out to be.
Incentives in the pharma industry are strange and often at odds with the needs of the sick. The case in point is that it's often a better business model to treat a disease in the long term than to cure it (statins being a prime example). Antibiotics are another great example of a drug class that are relatively under produced/researched given the fact that you only need a one or two week course to rid yourself of an infection (thus making it difficult to get a decent return on your investment). Furthermore they have a nasty habit of creating PR problems for drug companies who are tempted to charge a lot of money (because they can) for a potentially life saving cure. That being said, Harvoni is unusual in that 1. it cures a disease, 2. that many people have, and 3. are unlikely to die from in the short term. Yes, Hep C is a terrible disease that untreated will lead to cirrhosis, and possibly liver cancer. But we do have other treatments (albeit with terrible side effects) that keep the disease in check. I suspect that this is one of the reasons why we are now hearing about a lot of weirdness when it comes to rationing healthcare dollars, especially in the face of significant drug costs. And while I won't defend the practice of charging a veritable shitload for a drug, it is important to continue to incentivize their creation. How best to do that is a balancing act, and a difficult one to get right. It's also one that our healthcare system doesn't do very well, nor with any sense of equity.
If you're at all interested in learning more about the wacky world of drug development I can't recommend Derek Lowe's blog In the Pipeline enough. He obviously has his biases, but he definitely digs into these issues, and is almost always thought provoking.
posted by ghostpony at 7:53 PM on April 25, 2016 [11 favorites]
Incentives in the pharma industry are strange and often at odds with the needs of the sick. The case in point is that it's often a better business model to treat a disease in the long term than to cure it (statins being a prime example). Antibiotics are another great example of a drug class that are relatively under produced/researched given the fact that you only need a one or two week course to rid yourself of an infection (thus making it difficult to get a decent return on your investment). Furthermore they have a nasty habit of creating PR problems for drug companies who are tempted to charge a lot of money (because they can) for a potentially life saving cure. That being said, Harvoni is unusual in that 1. it cures a disease, 2. that many people have, and 3. are unlikely to die from in the short term. Yes, Hep C is a terrible disease that untreated will lead to cirrhosis, and possibly liver cancer. But we do have other treatments (albeit with terrible side effects) that keep the disease in check. I suspect that this is one of the reasons why we are now hearing about a lot of weirdness when it comes to rationing healthcare dollars, especially in the face of significant drug costs. And while I won't defend the practice of charging a veritable shitload for a drug, it is important to continue to incentivize their creation. How best to do that is a balancing act, and a difficult one to get right. It's also one that our healthcare system doesn't do very well, nor with any sense of equity.
If you're at all interested in learning more about the wacky world of drug development I can't recommend Derek Lowe's blog In the Pipeline enough. He obviously has his biases, but he definitely digs into these issues, and is almost always thought provoking.
posted by ghostpony at 7:53 PM on April 25, 2016 [11 favorites]
Something tells me, that like a lot of other artificially high priced products Vs raw manufacturing cost or even total brain-to-door costs, this is vastly exaggerated and the cheap generic is very close.
I am currently experiencing a drug-related side effect. I have experienced this side effect before, and I am very very confident in my diagnosis. I'm also reasonably certain that the side effect is coming from at least one of the drugs that I am currently taking. (The release profile matches it, and I started experiencing it shortly after I refilled my prescriptions.) Which is a problem, because none of the drugs I am currently on have been reported to cause this side effect.
I am, perhaps, overly paranoid, but my best guess now is that I've been sensitized to the side effect and that the generic drug I'm taking is actually cross-contaminated with something that can cause that side effect.
This may sound suspicious, but, if you delve into some of the FDA letters to plants that produce drugs overseas, the results are terrifying. (Another example.)
Generic drugs aren't just cheaper because they're produced by a knock-off company. They're cheaper because the FDA allows the companies to cut a ton of corners -- the standard for generic drugs is that the target concentration has to be plus or minus 20% of the named dosage. Generic drugs produced by a third-world pharmacy in the absence of any meaningful regulatory process might work, but they also might kill you.
posted by steady-state strawberry at 8:24 PM on April 25, 2016 [5 favorites]
I am currently experiencing a drug-related side effect. I have experienced this side effect before, and I am very very confident in my diagnosis. I'm also reasonably certain that the side effect is coming from at least one of the drugs that I am currently taking. (The release profile matches it, and I started experiencing it shortly after I refilled my prescriptions.) Which is a problem, because none of the drugs I am currently on have been reported to cause this side effect.
I am, perhaps, overly paranoid, but my best guess now is that I've been sensitized to the side effect and that the generic drug I'm taking is actually cross-contaminated with something that can cause that side effect.
This may sound suspicious, but, if you delve into some of the FDA letters to plants that produce drugs overseas, the results are terrifying. (Another example.)
Generic drugs aren't just cheaper because they're produced by a knock-off company. They're cheaper because the FDA allows the companies to cut a ton of corners -- the standard for generic drugs is that the target concentration has to be plus or minus 20% of the named dosage. Generic drugs produced by a third-world pharmacy in the absence of any meaningful regulatory process might work, but they also might kill you.
posted by steady-state strawberry at 8:24 PM on April 25, 2016 [5 favorites]
It should be mandatory that the maximum price for prescription drugs be set using cost-plus pricing with some reasonably small percentage for the "plus." I don't care if they include all of their other R&D spending in their "costs," but something to be just barely cheaper than an alternative like a liver transplant is criminal.
posted by cosmic.osmo at 8:27 PM on April 25, 2016 [4 favorites]
posted by cosmic.osmo at 8:27 PM on April 25, 2016 [4 favorites]
This is the world we have made by allowing it to happen.
posted by Oyéah at 8:35 PM on April 25, 2016 [5 favorites]
posted by Oyéah at 8:35 PM on April 25, 2016 [5 favorites]
What the ever-loving fuck. Sometimes I hate people, and some times I hate people a lot.
George W. Bush continues giving long after he leaves office. The 108th Congress did some absolutely fucking ghastly stuff other than the Iraq War. It's a preview of what happens when Republicans get control of all three chambers of Congress.
posted by Talez at 8:50 PM on April 25, 2016 [4 favorites]
George W. Bush continues giving long after he leaves office. The 108th Congress did some absolutely fucking ghastly stuff other than the Iraq War. It's a preview of what happens when Republicans get control of all three chambers of Congress.
posted by Talez at 8:50 PM on April 25, 2016 [4 favorites]
Opdivo is a non-chemotherapy treatment for a few kinds of cancer, and has been on the market for just a little over a year.
The sticker price for Opdivo is $12,000 to $14,000 per treatment. The cost can vary because it is dosed in accordance with body weight. Typically, the treatment is given every two weeks.
A family member has been receiving the Opdivo treatments since just after they became available. Some treatments had to be skipped due to complications and side effects. She has had about 25 treatments.
That's $300,000.
There is no surgical alternative, and the chemotherapy was literally killing her.
Currently it looks as though the treatments will continue indefinitely. She continues to live.
MediCare/MedicAid pays for it all. At some point, won't they order treatment to end?
At least the HepC treatments cure the disease.
posted by yesster at 9:26 PM on April 25, 2016
The sticker price for Opdivo is $12,000 to $14,000 per treatment. The cost can vary because it is dosed in accordance with body weight. Typically, the treatment is given every two weeks.
A family member has been receiving the Opdivo treatments since just after they became available. Some treatments had to be skipped due to complications and side effects. She has had about 25 treatments.
That's $300,000.
There is no surgical alternative, and the chemotherapy was literally killing her.
Currently it looks as though the treatments will continue indefinitely. She continues to live.
MediCare/MedicAid pays for it all. At some point, won't they order treatment to end?
At least the HepC treatments cure the disease.
posted by yesster at 9:26 PM on April 25, 2016
How best to do that is a balancing act, and a difficult one to get right.
Put bounties on them. New antibiotic with [technical description of effectiveness, safety, and difficulty of evolving resistance]? Here's your comically large check for ten billion dollars or whatever.
posted by ROU_Xenophobe at 9:40 PM on April 25, 2016 [1 favorite]
Put bounties on them. New antibiotic with [technical description of effectiveness, safety, and difficulty of evolving resistance]? Here's your comically large check for ten billion dollars or whatever.
posted by ROU_Xenophobe at 9:40 PM on April 25, 2016 [1 favorite]
Generic drugs produced by a third-world pharmacy in the absence of any meaningful regulatory process might work, but they also might kill you.
My understanding is that Indian pharmaceutical manufacturers are actually very good.
posted by Jacqueline at 9:41 PM on April 25, 2016 [4 favorites]
My understanding is that Indian pharmaceutical manufacturers are actually very good.
posted by Jacqueline at 9:41 PM on April 25, 2016 [4 favorites]
@yesster the trouble with prices in medicine is that it's hard to tell what anybody is actually paying. By that I mean that there are frequently exemptions for people who can't afford the drug, or insurers cut deals where they do funky accounting with the pharm company such that they don't end up paying what they've been billed. I've straight up asked my Hem/Onc attending what the anti-PD1 (the drug your family member takes) costs for a patient we were taking care of and they had no idea, and didn't even know a good way to find out. Just because a patient is "billed" $14,000 does not mean that's what's being paid.
It looks like your family member is being kept alive (presuming it's the meds) to the tune of $300k per year. That's not bad all things considered. And while it sounds more expensive than Harvoni (because it is) there are no reasonable alternatives and few people are willing to say no to life-saving interventions. Heart transplants are a great example of an INSANELY costly way of saving a life. The total cost is several million dollars of care when all is said and done. Those same dollars could have a much higher yield or ROI if invested in psychiatric services.
Overall, one of the great takeaways from my medical education is that Americans are really really bad at rationing healthcare dollars. In that we're totally willing to spend a ton on weird last ditch efforts like ICU care at the end of life or crazy novel oncology drugs for relatively little return. That same money has a way way way higher ROI if spent on simple things like preventive care, or better quality healthcare for kids, or mental health services. It's just that when you're young and relatively healthy it all seems less urgent or valuable to invest in good health even though those early decisions end up influencing major costs down the line. At the end of the day i believe medicine is this amazing practice based upon objective research (more or less) but that is delivered with stunning amounts of irrationality. I also can't see myself doing anything else FWIW.
posted by ghostpony at 9:57 PM on April 25, 2016 [12 favorites]
It looks like your family member is being kept alive (presuming it's the meds) to the tune of $300k per year. That's not bad all things considered. And while it sounds more expensive than Harvoni (because it is) there are no reasonable alternatives and few people are willing to say no to life-saving interventions. Heart transplants are a great example of an INSANELY costly way of saving a life. The total cost is several million dollars of care when all is said and done. Those same dollars could have a much higher yield or ROI if invested in psychiatric services.
Overall, one of the great takeaways from my medical education is that Americans are really really bad at rationing healthcare dollars. In that we're totally willing to spend a ton on weird last ditch efforts like ICU care at the end of life or crazy novel oncology drugs for relatively little return. That same money has a way way way higher ROI if spent on simple things like preventive care, or better quality healthcare for kids, or mental health services. It's just that when you're young and relatively healthy it all seems less urgent or valuable to invest in good health even though those early decisions end up influencing major costs down the line. At the end of the day i believe medicine is this amazing practice based upon objective research (more or less) but that is delivered with stunning amounts of irrationality. I also can't see myself doing anything else FWIW.
posted by ghostpony at 9:57 PM on April 25, 2016 [12 favorites]
One of our local Insurers has been involved in this Hep-C bullshit. I don't have words to express my outrage.
posted by mikelieman at 4:15 AM on April 26, 2016
posted by mikelieman at 4:15 AM on April 26, 2016
Hell, i'd even like to see someone like Vice order pills from 5 or 6 different sites and get them tested.
Greg Jeffreys blog was probably the first online account of someone actually going to India and paying for the treatment over there.
For a long time, he was pretty much the go-to guy for this stuff in Australia and New Zealand -- not sure if he still is, but his Facebook place used to be the best place to contact him.
I had friends in the UK who were considering the trip, but they've now started on the regime under the NHS.
posted by PeterMcDermott at 5:10 AM on April 26, 2016 [3 favorites]
Greg Jeffreys blog was probably the first online account of someone actually going to India and paying for the treatment over there.
For a long time, he was pretty much the go-to guy for this stuff in Australia and New Zealand -- not sure if he still is, but his Facebook place used to be the best place to contact him.
I had friends in the UK who were considering the trip, but they've now started on the regime under the NHS.
posted by PeterMcDermott at 5:10 AM on April 26, 2016 [3 favorites]
I'll just join the choir here by saying this shit pisses me off so bad as a nurse practitioner. At least Gilead has a program to get access to PrEP, which I've been using the hell out of for patients (take advantage as long as it lasts!). I work in a FQHC, mostly Medicaid or uninsured patients (or one of the new Blue Cross ACA exchange ones that a bunch of people have, that doesn't pay for anything and no one accepts except us), and most of my care is based around what I can actually try and get people, which can be ... nothing, or more infuriatingly, substandard care. I'm in OBGYN, so this reminds me of the whole Makena bullshit and the FDA letting them corner a captive market at outrageous prices. /vent vent vent.
posted by circle_b at 5:12 AM on April 26, 2016 [1 favorite]
posted by circle_b at 5:12 AM on April 26, 2016 [1 favorite]
Many of the patients at the urban emergency department where I work can't even afford over-the-counter ibuprofen. They come back over and over again for our freebie NSAIDs... a lot of them have Hep C, and needless to say it will be a cold day in Hell before they can afford treatment for it.
This is such a strange comment I'm not sure what you are trying to say. No one, or almost no one, is paying for this medication out of pocket. It's being paid for by insurance companies, and for poor patients, specifically by Medicaid. Of course not everyone who needs Medicaid has Medicaid, and Medicaid doesn't always cover a medication, but that's the issue here. Not whether or not people can afford NSAIDs let alone HepC meds.
As frustrating a situation as this is, I don't think misrepresenting the mechanisms by which this drug is paid for (or not) helps to identify the problem. I mean, I can afford more than enough NSAIDs to destroy my kidneys, and I couldn't come close to paying for this medication if I had to.
posted by OmieWise at 6:22 AM on April 26, 2016
This is such a strange comment I'm not sure what you are trying to say. No one, or almost no one, is paying for this medication out of pocket. It's being paid for by insurance companies, and for poor patients, specifically by Medicaid. Of course not everyone who needs Medicaid has Medicaid, and Medicaid doesn't always cover a medication, but that's the issue here. Not whether or not people can afford NSAIDs let alone HepC meds.
As frustrating a situation as this is, I don't think misrepresenting the mechanisms by which this drug is paid for (or not) helps to identify the problem. I mean, I can afford more than enough NSAIDs to destroy my kidneys, and I couldn't come close to paying for this medication if I had to.
posted by OmieWise at 6:22 AM on April 26, 2016
Sorry, you're not sick enough.
A note on the title - it's cute, but not accurate. Or more specifically, it's not the complete picture. As stated in the OP,
The title would be more appropriate if it were a case of an insurance provider denying reimbursement for treatment of a minor case of some disease that a healthy individual would probably survive, in the justification that they're cutting costs, but this is a clusterfuck.
posted by filthy light thief at 7:00 AM on April 26, 2016 [2 favorites]
A note on the title - it's cute, but not accurate. Or more specifically, it's not the complete picture. As stated in the OP,
a typical 12 week course is over $95,000. Combine that with the estimated 14+ million HCV positive persons in the US and we're talking about over a trillion dollars for treatment of one disease. State Medicaid programs and the VA see a multibillion dollar hole blown in their budgets, with no extra dollars comming from Congress or state legislatures, so they have restricted access to the medications."Not sick enough" is an ugly way of saying "we're in a serious triage situation here, due to our limited budget, the exhorbitent cost of this drug, and Congress screwing us from both sides by not increasing our funding to support higher drug costs while also prohibiting us from getting a better deal on the drugs to save money.
The title would be more appropriate if it were a case of an insurance provider denying reimbursement for treatment of a minor case of some disease that a healthy individual would probably survive, in the justification that they're cutting costs, but this is a clusterfuck.
posted by filthy light thief at 7:00 AM on April 26, 2016 [2 favorites]
I get that there's a tradeoff between encouraging drug development and providing access, but I just can't believe that the appropriate balance is "charge what the market will bear." It also seems like American politicians are totally cool with the US medical system subsidizing drug development for the rest of the world with our ungodly high drug prices, and that doesn't seem to make any sense at all.
I also think it's sort of funny that this company is called Gilead, which I assume is a Biblical reference. I'm not Christian, but I don't think the answer to "what would Jesus do?" is "cure the sick, provided someone can pay $95,000."
posted by ArbitraryAndCapricious at 7:27 AM on April 26, 2016 [3 favorites]
I also think it's sort of funny that this company is called Gilead, which I assume is a Biblical reference. I'm not Christian, but I don't think the answer to "what would Jesus do?" is "cure the sick, provided someone can pay $95,000."
posted by ArbitraryAndCapricious at 7:27 AM on April 26, 2016 [3 favorites]
Arbitrary, I always figured Gilead was a reference to The Handmaiden's Tale. As in "fuck you, go back to a medieval lifestyle while we enjoy the riches of the world." But that could just be me assuming stuff.
posted by Hactar at 7:45 AM on April 26, 2016
posted by Hactar at 7:45 AM on April 26, 2016
♪ There is a $95,000 balm in Gilead ♪
posted by asperity at 7:45 AM on April 26, 2016 [3 favorites]
posted by asperity at 7:45 AM on April 26, 2016 [3 favorites]
demons in the base: The price of Harvoni is pegged to the equivalent cost of a liver transplant.
I always thought it was an amusing coincidence that the daily cost of nicotine patches was roughly the price of a package of cigarettes. Economics: threat or menace?
posted by sneebler at 8:34 AM on April 26, 2016 [1 favorite]
I always thought it was an amusing coincidence that the daily cost of nicotine patches was roughly the price of a package of cigarettes. Economics: threat or menace?
posted by sneebler at 8:34 AM on April 26, 2016 [1 favorite]
It's worth pointing out that there are not 14 million active Hep C infections in the US. It's closer to 3.5 million (per the CDC). That might change now that we're screening for Hep C (but not by much) , a byproduct of the fact that there is now a cure. Most patients born before 1950, or of Asian descent (or with any number of risk factors) are now getting screened. Obviously the decision to screen is more complicated, but the reality is that cures like Harvoni have really significant consequences in terms of public health.
Also, I know this whole situation seems terrible, but keep in mind that there is now a cure, and people who really need the cure tend to get it. Not only that, but there is increasing competitive pressure as similar drugs come on line that will likely drive down the price before too long. And while drug patent law is a minefield, these drugs do eventually become generic, and Hep C will, with any luck, eventually be eradicated.
posted by ghostpony at 8:53 AM on April 26, 2016
Also, I know this whole situation seems terrible, but keep in mind that there is now a cure, and people who really need the cure tend to get it. Not only that, but there is increasing competitive pressure as similar drugs come on line that will likely drive down the price before too long. And while drug patent law is a minefield, these drugs do eventually become generic, and Hep C will, with any luck, eventually be eradicated.
posted by ghostpony at 8:53 AM on April 26, 2016
sneebler: I always thought it was an amusing coincidence that the daily cost of nicotine patches was roughly the price of a package of cigarettes. Economics: threat or menace?
The invisible hand is not blind or stupid. It recognizes you have options, and the options here are continued addiction and kicking the habit. Why tip the scales in that decision? Let the customer choose!
posted by filthy light thief at 9:53 AM on April 26, 2016
The invisible hand is not blind or stupid. It recognizes you have options, and the options here are continued addiction and kicking the habit. Why tip the scales in that decision? Let the customer choose!
posted by filthy light thief at 9:53 AM on April 26, 2016
How sick is it that these prohibitively expensive drugs are advertised on American TV every day with the slogan "ask your doctor if Harvoni is right for you" and "are you ready to be cured of Hep C?" All drug ads should be banned as they are in many countries, but advertising these drugs that many can never afford is especially cruel.
posted by mermayd at 10:12 AM on April 26, 2016 [5 favorites]
posted by mermayd at 10:12 AM on April 26, 2016 [5 favorites]
The invisible hand is not blind or stupid.
No, but I'd say it's clearly self-serving*, the protestations of Adam Smith quoters notwithstanding. (Not you particularly, but I think these kinds of arguments are used to rationalize price-gouging by those with an advantage.)
* Dude, it's not even invisible!
posted by sneebler at 10:27 AM on April 26, 2016
No, but I'd say it's clearly self-serving*, the protestations of Adam Smith quoters notwithstanding. (Not you particularly, but I think these kinds of arguments are used to rationalize price-gouging by those with an advantage.)
* Dude, it's not even invisible!
posted by sneebler at 10:27 AM on April 26, 2016
I always thought it was an amusing coincidence that the daily cost of nicotine patches was roughly the price of a package of cigarettes.
This isn't remotely close to being true in the UK. I used to be able to buy a week's worth of NRT for the cost of a packet of fags.
And you could get them for free if you could be bothered to attend a smoking cessation clinic.
posted by PeterMcDermott at 11:04 AM on April 26, 2016
This isn't remotely close to being true in the UK. I used to be able to buy a week's worth of NRT for the cost of a packet of fags.
And you could get them for free if you could be bothered to attend a smoking cessation clinic.
posted by PeterMcDermott at 11:04 AM on April 26, 2016
I am an ear, nose, and throat doctor in the US. My go-to antibiotic in penicillin-allergic sinusitis patients is Doxycycline, which, until two years ago, was about a dime a pill. Now it's $5 a pill because some drug company bought up the two generic manufacturers and hiked up the price. This is also the drug of choice for Lyme disease and other tick-bourne illnesses. I frequently have to use an antibiotic with less-than-adequate coverage and/or more side effects (Levaquin, Cipro, Bactrim, Ceftin) instead of this old, generally well-tolerated, formerly inexpensive drug.
The issues surrounding new, expensive wonderdrugs like Harvoni are incredibly complex, but much more worrisome to me is restriction of formularies because of the price-gouging of generics.
posted by Fritzle at 12:07 PM on April 26, 2016 [13 favorites]
The issues surrounding new, expensive wonderdrugs like Harvoni are incredibly complex, but much more worrisome to me is restriction of formularies because of the price-gouging of generics.
posted by Fritzle at 12:07 PM on April 26, 2016 [13 favorites]
The price of Harvoni is pegged to the equivalent cost of a liver transplant.
Then how come the guy who fixes the brakes on your car isn't paid a million dollars?
posted by JackFlash at 2:56 PM on April 26, 2016
Then how come the guy who fixes the brakes on your car isn't paid a million dollars?
posted by JackFlash at 2:56 PM on April 26, 2016
Probably because he doesn't have a patent on break-fixing technology.
posted by ArbitraryAndCapricious at 3:22 PM on April 26, 2016 [1 favorite]
posted by ArbitraryAndCapricious at 3:22 PM on April 26, 2016 [1 favorite]
The pricing of pharmaceutical medicine is INSANE.
'Oh, but it's so expensive to develop!', some say.
To which the proper response is: that is true. However, half of the operating capital of pharma companies is spent on advertising. Not development: advertising. Not just getting the info out there to doctors, which an email newsletter and publishing in journals could do; no, it's spent on advertising and bribing doctors, hospitals etc to use their drugs, no matter if it's more expensive and/or less efficient.
And the fact that the upper-mid to upper management can afford mansions and other extreme luxuries goes to show: medicines are expensive because we let them be. There is so much money above cost of R&D left over that insane luxury lifestyles are financed for many in the upper echelons.
So, just banning advertising could make medicines cheaper by almost HALF. Disallowing patents/monopolies on generics would ensure arbitray price hikes would create free-market pushback by companies producing generics at a lower price. Capping the allowed profit and CEO pay would lower prices yet again, all without touching the actual usefull work done by pharma companies.
Hell, with the amount of money involved, I wonder why insurance companies aren't just building their own factories.
posted by MacD at 8:54 PM on April 26, 2016 [5 favorites]
'Oh, but it's so expensive to develop!', some say.
To which the proper response is: that is true. However, half of the operating capital of pharma companies is spent on advertising. Not development: advertising. Not just getting the info out there to doctors, which an email newsletter and publishing in journals could do; no, it's spent on advertising and bribing doctors, hospitals etc to use their drugs, no matter if it's more expensive and/or less efficient.
And the fact that the upper-mid to upper management can afford mansions and other extreme luxuries goes to show: medicines are expensive because we let them be. There is so much money above cost of R&D left over that insane luxury lifestyles are financed for many in the upper echelons.
So, just banning advertising could make medicines cheaper by almost HALF. Disallowing patents/monopolies on generics would ensure arbitray price hikes would create free-market pushback by companies producing generics at a lower price. Capping the allowed profit and CEO pay would lower prices yet again, all without touching the actual usefull work done by pharma companies.
Hell, with the amount of money involved, I wonder why insurance companies aren't just building their own factories.
posted by MacD at 8:54 PM on April 26, 2016 [5 favorites]
They couldn't sell the drugs without a patent or a license from the patent holder.
posted by tivalasvegas at 11:23 AM on April 27, 2016
posted by tivalasvegas at 11:23 AM on April 27, 2016
My friend was denied three times for these drugs. The fourth time they finally okayed him, but that was after some strong urging from one of the top docs at U of C. He died a week later.
I can verify without a doubt the insurance companies will let people die over money.
posted by P.o.B. at 11:25 AM on April 27, 2016 [4 favorites]
I can verify without a doubt the insurance companies will let people die over money.
posted by P.o.B. at 11:25 AM on April 27, 2016 [4 favorites]
As ever, many of these supposedly unsolvable problems in the US medical system have been solved by other countries; in this case, allowing the government-run payer (Medicare) to negotiate prices, as happens in more civilized places.
We can take some of the savings and invest it directly into R&D at public institutions and universities, and/or the cash prize or private route with requirements that the results & treatments developed be in the public domain.
Access to health care is a basic human right. Of course, so are access to food, water, decent education and the ballot box, and it looks like we're driving the systems that support all those rights off the damn cliff too.
posted by tivalasvegas at 11:34 AM on April 27, 2016 [2 favorites]
We can take some of the savings and invest it directly into R&D at public institutions and universities, and/or the cash prize or private route with requirements that the results & treatments developed be in the public domain.
Access to health care is a basic human right. Of course, so are access to food, water, decent education and the ballot box, and it looks like we're driving the systems that support all those rights off the damn cliff too.
posted by tivalasvegas at 11:34 AM on April 27, 2016 [2 favorites]
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Insurers have responded with a variety of dodges including restricted formularies, arbitrary policies on medical necessity, exclusion of most propietary medications based on "tiers" related to cost and not efficacy, higher co-pays and deductibles, and requiring patient and physicians to get on the preapproval-denial-appeal merry-go-round, until the patient (hopefully) changes insurance in frustration or drops dead. Meanwhile, Patrick J. Geraghty, CEO of the "non-profit" Florida Blue Cross and Blue Shield received $7.2 million in compensation in 2014, the latest year for which data are available, similar to Anthem's CEO. Not Goldman level numbers - and certainly not the same ball park as John Martin, Gilead's CEO, who raked in $187 milion in 2014 - but no worries about co-pays there.
posted by sudogeek at 4:16 PM on April 25, 2016 [10 favorites]