11 ms·

> The cost, however, is steep — the list, or wholesale, price is $3,960 a month, or more than $47,500 a year. The list price for the one-time initiation dose is

by abeppu 6y ago

> The cost, however, is steep — the list, or wholesale, price is $3,960 a month, or more than $47,500 a year. The list price for the one-time initiation dose is $5,490. Median income in the US is ~$31K apparently. So even in a rich country, this is like 50% more than the income of a typical person. My understanding is the funding for the trials was partly from NIAID. This seems like yet another case where public funds are used for research, but a company ends up with the ability to dictate pricing. I'm glad that this works and that there is another, more convenient and effective treatment option. But shouldn't we have some setup where if tax dollars pay for the research, the government should own a share of the IP commensurate with their funding level, and should then be able to have some say in pricing? Or, if you think that the government itself shouldn't own IP for a product on the market, can we create an independent non-profit which receives ownership, and whose charter aligns with actually treating as many people as possible? I'm not saying that when real, innovative work happens, pharmaceutical companies shouldn't get some meaningful return on the money they put in. But when the public supports the work, we shouldn't get nothing.

abeppu 6y ago
Or to approach the same issue from the other direction: Does public funding for research of this type self-sabotage, if it enables pharmaceutical companies to set pricing at a level which meaningfully limits the use of the results of that research?
- fastball 6y ago
  How exactly are is big pharma limiting the result of that research? Anyone can use the research.
  - Robotbeat 6y ago
    If the patents relating to likely avenues of that research are tied up, it makes it much harder.
    - fastball 6y ago
      How can you patent if there is open prior art?
      - Robotbeat 6y ago
        You patent the necessary later steps, not the prior art itself. Companies have a pretty good method.
        fastball 6y ago
        What is "prior art" when we're talking about profiting off of research if not the necessary steps to do something?
  - refurb 6y ago
    Anyone can’t use the research. Bayh-Dohl Act basically passes ownership of any IP to the person who received the grant. https://en.m.wikipedia.org/wiki/Bayh–Dole_Act https://en.m.wikipedia.org/wiki/Bayh–Dole_Act
timr 6y ago
> My understanding is the funding for the trials was partly from NIAID. I have no particular insight into the pricing of this drug, but in general, NIAID funding doesn't get anywhere close to the level of investment needed to bring a drug to market (NIAID's total budget is something like $5Bn. A single drug can easily require that much money to go to market). Moreover, it isn't a bright-line distinction between public and private funding: if a novel drug is developed (entirely privately) against a target for which academic researchers once received public funds, does it count as public funding? There's a huge gray area in between. Nearly all drugs can be characterized as "publicly funded", if you look hard enough. Rules like this sound great, but in practice, they'll lead to perverse incentives (like drug companies completely avoiding targets from the academic world, in the previous example). Nobody rational wants to spend billions of dollars doing late-stage development and clinical trials to be torpedoed by a researcher who took a small amount public funding decades prior.
- akiselev 6y ago
  > I have no particular insight into the pricing of this drug, but in general, NIAID funding doesn't get anywhere close to the level of investment needed to bring a drug to market (NIAID's total budget is something like $5Bn. A single drug can easily require that much money to go to market). According to [1] "the estimated median capitalized research and development cost per product was $985 million, counting expenditures on failed trials." That billion dollar figure is risk adjusted per product meaning that's the cost of all R&D and clinical trials against the number of products that hit the market. A lucky startup can pull off a successful trial for a few hundred million (i.e. Sofosbuvir), if not tens of millions for an orphan drug. The most expensive ("oncology and immuno-modulatory drugs" which are similar in complexity to HIV therapeutics) come in at a median of $2.8 billion and a mean of $4.5 billion but only because of an extreme outlier, Dupixent, which cost over $6 billion to develop. Dupixent costs $40k/year and has a much larger target market than this HIV treatment (IIRC on the order of 10 to 100x). This HIV injection is far more likely to be discounted in the developing world so the sticker price likely reflects that too. A $5 billion a year budget can go very far and the people should get the rewards for taking the risk, especially for a disease like HIV that has significant quality of life impacts on vulnerable populations. [1] https://jamanetwork.com/journals/jama/article-abstract/2762311 https://jamanetwork.com/journals/jama/article-abstract/27623...
joshuaissac 6y ago
> So even in a rich country, this is like 50% more than the income of a typical person. Generic versions of expensive American drugs tend to be released by Indian pharmaceutical companies into developing countries after a while.
- rtx 6y ago
  They do it after the patent expires.
  - chefkoch 6y ago
    Not always, the cancer drug lenalidomid (Revlimid) is around 20 000$ for 21 pills in the US, the indian generica is around 200$.
  - s1artibartfast 6y ago
    India does not allow patents on pharmaceuticals.[1] As a result, they have an excellent market for generics, but new medicine is 6-8 years behind the rest of the world. https://link.springer.com/chapter/10.1007/978-981-13-8102-7_11 https://link.springer.com/chapter/10.1007/978-981-13-8102-7_...
nceqs3 6y ago
I believe that the government does own a portion of the IP. If you read patents filed by defense contractors and pharma/universities they often say something like this "This invention was made with Government support under Contract no. F29601-03-C-0191 awarded by the Air Force Research Laboratory, Kirtland AFB, N. Mex. The Government has certain rights in the invention." https://patentimages.storage.googleapis.com/f9/bc/b9/dd132ea998dccf/US8165178.pdf https://patentimages.storage.googleapis.com/f9/bc/b9/dd132ea...
- hn_throwaway_99 6y ago
  So then why is the government letting the company reap so much of the benefits of their IP?
  - s1artibartfast 6y ago
    It depends on the contract made between the government and the developer before funding was issued.
  - dmitrygr 6y ago
    So that when they want more research done, companies do not reply with: "you screwed us last time, NO THNX BYE" Basically the same reason that "I changed the deal, pray i do not change it further" is a strategy that works at most once.
MBCook 6y ago
> The cost, however, is steep — the list, or wholesale, price is $3,960 a month, or more than $47,500 a year. Remember though that this is a replacement for an existing drug therapy, not something totally new. Does anyone know how much the daily pills cost per month?
- chefkoch 6y ago
  It looks like conventional treatment is between 400$ and 1500$ per month.
m12k 6y ago
> can we create an independent non-profit which receives ownership, and whose charter aligns with actually treating as many people as possible? There is a proposal for such an entity: https://en.wikipedia.org/wiki/Health_Impact_Fund https://en.wikipedia.org/wiki/Health_Impact_Fund
- reimertz 6y ago
  Independent non-profits trying to fight for individuals in a capitalist-driven society seems to be doomed to fail. An depressing example; Insulin and how the inventors made sure to make the the process available to anyone; > The patent would not be used for any other purpose than to prevent the taking out of a patent by other persons. When the details of the method of preparation are published anyone would be free to prepare the extract, but no one could secure a profitable monopoly. How did that go? 1,000% price increase, accounting for inflation. (US numbers) Edit: Removed rant-driven generalization and miss-information regarding legal obligations. Thanks for checking me. I get to upset reading these things.
  - lotsofpulp 6y ago
    > where corporations and their boards are legally bound to maximize profit, ignoring morals for profit. Where is this true? It’s not even a definable legal standard.
    - reimertz 6y ago
      You are definitely correct and thanks for pointing it out. Generalizations and miss-information doesn't help at all. I obviously need to go out for a walk before I comment on these type of news. It's super exciting but also extremely depressing since the ones who'd need this the most likely wont afford it.
      - peytn 6y ago
        The FDA approves ~40 drugs a year. If you want 40 new drugs a year, it unfortunately will cost somebody something to coordinate the large number of professionals over many years required by a modern development effort. Few drugs have been developed successfully on good intentions. I find excitement in the fact that we have found a way to get new treatments and cures. Other systems have been tried that weren’t so successful at pumping out new tech.
inasio 6y ago
In contrast, the napkin estimate for the cost of a year's worth of HIV drugs (latest generation integrase inhibitors) was 20K as of around 2 years ago, for western countries. Dolutegravir became generic, but prices likely won't change dramatically (specifically in western countries).
s1artibartfast 6y ago
>I'm glad that this works and that there is another, more convenient and effective treatment option. But shouldn't we have some setup where if tax dollars pay for the research, the government should own a share of the IP commensurate with their funding level, and should then be able to have some say in pricing? >Or, if you think that the government itself shouldn't own IP for a product on the market, can we create an independent non-profit which receives ownership, and whose charter aligns with actually treating as many people as possible? The current model of government funded research is like backing a Kickstarter because you want to see the product made, but get no direct benefit. It is made because we as a people think the world will be better off with the product, than without, and are willing to pay to make that happen. I think government co-venture is also great option, as long as it is negotiated up front and we can keep political corruption out of it. However, the question then becomes if drug development will dry up once the the government has locked down all the IP and nobody wants to partner with them. I think another good model would be seed support for independent non-profit pharmaceutical(s) charted to balance reinvested profits with social benefit (without government owning the IP). The question and risk here becomes one of oversight and accountability.
- disabled 6y ago
  Well, thanks to the US government, the very rare immune mediated neurological disease I have was discovered in the early 2000s, at the Mayo Clinic, via NIH grant funds. Because of the disease, I had uncontrollable orthostatic hypotension (low blood pressure when sitting/standing up), and I was passing out multiple times a day. I also was diagnosed with multiple types of arrhythmia. If it were not for the US government, I would not be alive. I am a dual US|EU citizen, and while being American is naturally a huge part of my identity, I would not be afraid to renounce my US citizenship. The only reason why I do not is because the US literally saved my life and others with the disease I have, worldwide.
offtop5 6y ago
3k month sounds about right for a chronic condition. Many many people pay at least this to stay alive. That said , Universal Health Care is needed for stuff like this to work. At 3k a month it makes the most sense to try and emigrate to a better country.
- jacquesm 6y ago
  That doesn't scale. If you push the cost of healthcare to other countries when it becomes too expensive instead of fixing the system in the country where you live then every other country with a better system's healthcare will collapse as well. Vote to improve the system where you live and make sure that your representatives realize that it could be them or their relatives in your situation. Quite a few countries have restrictions in this anyway, so whether it would even work in individual cases is another matter, for instance, here is Canada's provision: https://www.canada.ca/en/immigration-refugees-citizenship/services/immigrate-canada/inadmissibility/reasons/medical-inadmissibility.html https://www.canada.ca/en/immigration-refugees-citizenship/se...
  - offtop5 6y ago
    You could also buy a 10$ bus ticket https://khn.org/news/americans-cross-border-into-mexico-to-buy-insulin-at-a-fraction-of-u-s-cost/ https://khn.org/news/americans-cross-border-into-mexico-to-b...
    - jacquesm 6y ago
      Before long they'll be smuggling insulin rather than cocaine if it isn't already happening.
      - disabled 6y ago
        They already do. People buy insulin off Craigslist, in a way that is similar to a drug deal, because they cannot get it elsewhere. They sit in the car while their “insulin dealer” brings them the insulin from Mexico/Canada and they pay them in cash. See: https://youtu.be/VLwDvK0j4DQ https://youtu.be/VLwDvK0j4DQ
refurb 6y ago
If, as a company, you have the option of charging $X if you accept gov’t funding or 400% * $X, doesn’t that sound like a great way to disincentivized taking govt funding? And as others have said gov’t funding tends to be a small fraction of total cost of R&D. And the funding tends to come very early - some professor is researching a new anti-viral and stumbles across a new molecule. It’s still several hundred million and a decade or more away from market.
TaylorAlexander 6y ago
Great interview on problems with intellectual property rights in the drug market. https://www.youtube.com/watch?v=u6OpapwQOks https://www.youtube.com/watch?v=u6OpapwQOks
jklein11 6y ago
Does anyone actually end up paying the 47,500 a year for the drug or is this some sort of gimmick on the part of the drug company when they negotiate reimbursement rates with CMS or other payers?
- lwhi 6y ago
  I'd imagine this cost would generally be borne by insurers or a government health care body.
  - jklein11 6y ago
    I don't think either insurers or government health care bodies end up paying the sticker price. They usually have a contracted rate with the pharma companies that is less. Also, pharma companies have patient assistance programs which usually offer major discounts. I really don't know how effective this is and hhow many individuals get stuck with the full bill.
    - lwhi 6y ago
      So is the sticker price rarely paid?
- retrac 6y ago
  The standard brand name combination pills come to nearly $20,000 a year for the public insurers in Canada. They really do pay that much.
- divbzero 6y ago
  This is a fair point. Negotiated rates are usually lower and the cost should be spread across a pool of insured people, not all of whom have conditions that require ongoing high-cost therapies. Other comments in this thread also point out that there are alternative HIV treatments from Gilead and others that cost less. If the demand is not there for the new monthly injectable, ViiV will suffer for mispricing its own drug.
malandrew 6y ago
This is a brand new treatment. All things that are the product of cutting edge research and are difficult to get to market will be expensive. I'm taking an orphan drug that was approved in 2002/3 and costs more than this per month and last I checked the company that developed the drug was still in the red. This idea that drugs should be cheap and accessible the moment they are approved is incompatible with economic reality. You need a system with a profit motive so that many people and investors are motivated to invest their lives, careers and money in that market so we get progress year after year. This is a trolley car problem. On one track are all the people you can save in the present by making something immediately accessible to all regardless of the economic reality of those that produced the drug. On the other track all the the people that you can save long term by having an economically viable industry that can continue making advances that save lives in perpetuity.
- disabled 6y ago
  > This idea that drugs should be cheap and accessible the moment they are approved is incompatible with economic reality. I know that orphan drugs are lifesaving and it is life-and-death for the people who do and don’t receive them, but this is generally not true, including for orphan drugs. I know because I have 2 rare immune mediated neurological diseases affecting my peripheral nervous system and I take an orphan drug (blood product) known as subcutaneous immunoglobulin. Soliris, one of the world’s most expensive drugs, costing ~$600,000/year in countries with “socialized medicine” is estimated to cost less than 1% of that price to produce, as in less than $6,000/year. This is from industry insiders who have technical experience. Not only that, it is estimated that 80-90% of the work was discovered on public, government funds. See at 11:30 https://youtu.be/0uYCw5EDX8U https://youtu.be/0uYCw5EDX8U I have a background in applied science and I agree that this is the general ballpark case for orphan drugs, based on reading patents.
hnburnsy 6y ago
I worked for a drug distributor a long time ago and the joke for AWP (average wholesale price) is that is stood for Ain't What's Paid. Almost all drugs were negotiated down to 70-80% of AWP.
jeffreyrogers 6y ago
In the US most HIV drug manufacturers have coupons or other voucher programs that patients can use the reduce the price by a lot.
disabled 6y ago
There is a substantial percent of the population whose yearly medical care costs exceed their income. For example, about 7% of the world’s population collectively has some sort of a rare disease, which is theoretically treated with orphan drugs. There are also people who chronically live with cancer who end up living quite a long time. Diabetes, (type 1 or type 2) with or without complications, is quite expensive in the US. I personally have 2 rare immune mediated neurological diseases affecting my peripheral nervous system. The only medication that has kept me in pharmaceutical remission is subcutaneous immunoglobulin (intravenous immunoglobulin did not work), and I have tried 10 different treatments plus combinations of them. When I was living in the US, my private commercial insurance paid, under contract (not the amount that was being billed which was much higher!), $100 per gram. In other words, they were paying $23,500/month for my blood product or $282,000/year. In Europe, where I live now, the price goes for 40 Euro (about $50/gram). Anyways, you should watch this, “The World’s Most Expensive Drug” (which it no longer is), which is quite revealing: https://youtu.be/0uYCw5EDX8U https://youtu.be/0uYCw5EDX8U Alexion (a pharma company) started the trend and now the have drugs that cost millions per year over, that are required over the course of a lifetime: https://www.nytimes.com/2019/08/25/health/drug-prices-rare-diseases.html https://www.nytimes.com/2019/08/25/health/drug-prices-rare-d... There is a good documentary on it (requires a Hulu subscription): https://www.nytimes.com/2019/08/23/the-weekly/rare-diseases-orphan-drugs.html?action=click&module=RelatedLinks&pgtype=Article https://www.nytimes.com/2019/08/23/the-weekly/rare-diseases-... Anyways, the prices of these drugs are an insult to the intelligence of a lot of scientists and (formal) engineers. I also have type 1 diabetes, and because of my training in electrical engineering, I could tell by reading patents on analog insulin patents that a 10 mL bottle of insulin cost somewhere between $1-$10 to produce. Turns out that it costs between $3-$6 to produce. At its worse, in the US, it cost $350 per 10 mL vial for analog insulin. Anyways, the best way of dealing with this situation is by having even the most disabled people working to offset these prices, along with having universal healthcare with price controls. Unfortunately worker protection against discrimination in the US is very poor and when your health benefits are tied to work then it just does not work. Patent law also needs to be reformed, and if the prices are obscene and unjustifiable, then they should be seized.
tehjoker 6y ago
This video by Noam Chomsky on science funding explains this better than I can: https://www.youtube.com/watch?v=Av96iIRa0f8 https://www.youtube.com/watch?v=Av96iIRa0f8
Animats 6y ago
The cost, however, is steep — the list, or wholesale, price is $3,960 a month, or more than $47,500 a year. The list price for the one-time initiation dose is $5,490. Supporting a subculture that's heavily into anal sex is extremely expensive.
LockAndLol 6y ago
It's been authorized in the EU since last year [0] and I bet it'll be partially or completely reimbursed by health insurances. 0: https://www.ema.europa.eu/en/medicines/human/EPAR/rekambys#product-information-section https://www.ema.europa.eu/en/medicines/human/EPAR/rekambys#p...

by abeppu 6y ago

abeppu 6y ago

Or to approach the same issue from the other direction: Does public funding for research of this type self-sabotage, if it enables pharmaceutical companies to set pricing at a level which meaningfully limits the use of the results of that research?

fastball 6y ago
How exactly are is big pharma limiting the result of that research? Anyone can use the research.
- Robotbeat 6y ago
  If the patents relating to likely avenues of that research are tied up, it makes it much harder.
  - fastball 6y ago
    How can you patent if there is open prior art?
    - Robotbeat 6y ago
      You patent the necessary later steps, not the prior art itself. Companies have a pretty good method.
      - fastball 6y ago
        What is "prior art" when we're talking about profiting off of research if not the necessary steps to do something?
- refurb 6y ago
  Anyone can’t use the research. Bayh-Dohl Act basically passes ownership of any IP to the person who received the grant. https://en.m.wikipedia.org/wiki/Bayh–Dole_Act https://en.m.wikipedia.org/wiki/Bayh–Dole_Act

timr 6y ago

> My understanding is the funding for the trials was partly from NIAID. I have no particular insight into the pricing of this drug, but in general, NIAID funding doesn't get anywhere close to the level of investment needed to bring a drug to market (NIAID's total budget is something like $5Bn. A single drug can easily require that much money to go to market). Moreover, it isn't a bright-line distinction between public and private funding: if a novel drug is developed (entirely privately) against a target for which academic researchers once received public funds, does it count as public funding? There's a huge gray area in between. Nearly all drugs can be characterized as "publicly funded", if you look hard enough. Rules like this sound great, but in practice, they'll lead to perverse incentives (like drug companies completely avoiding targets from the academic world, in the previous example). Nobody rational wants to spend billions of dollars doing late-stage development and clinical trials to be torpedoed by a researcher who took a small amount public funding decades prior.

akiselev 6y ago
> I have no particular insight into the pricing of this drug, but in general, NIAID funding doesn't get anywhere close to the level of investment needed to bring a drug to market (NIAID's total budget is something like $5Bn. A single drug can easily require that much money to go to market). According to [1] "the estimated median capitalized research and development cost per product was $985 million, counting expenditures on failed trials." That billion dollar figure is risk adjusted per product meaning that's the cost of all R&D and clinical trials against the number of products that hit the market. A lucky startup can pull off a successful trial for a few hundred million (i.e. Sofosbuvir), if not tens of millions for an orphan drug. The most expensive ("oncology and immuno-modulatory drugs" which are similar in complexity to HIV therapeutics) come in at a median of $2.8 billion and a mean of $4.5 billion but only because of an extreme outlier, Dupixent, which cost over $6 billion to develop. Dupixent costs $40k/year and has a much larger target market than this HIV treatment (IIRC on the order of 10 to 100x). This HIV injection is far more likely to be discounted in the developing world so the sticker price likely reflects that too. A $5 billion a year budget can go very far and the people should get the rewards for taking the risk, especially for a disease like HIV that has significant quality of life impacts on vulnerable populations. [1] https://jamanetwork.com/journals/jama/article-abstract/2762311 https://jamanetwork.com/journals/jama/article-abstract/27623...

joshuaissac 6y ago

> So even in a rich country, this is like 50% more than the income of a typical person. Generic versions of expensive American drugs tend to be released by Indian pharmaceutical companies into developing countries after a while.

rtx 6y ago
They do it after the patent expires.
- chefkoch 6y ago
  Not always, the cancer drug lenalidomid (Revlimid) is around 20 000$ for 21 pills in the US, the indian generica is around 200$.
- s1artibartfast 6y ago
  India does not allow patents on pharmaceuticals.[1] As a result, they have an excellent market for generics, but new medicine is 6-8 years behind the rest of the world. https://link.springer.com/chapter/10.1007/978-981-13-8102-7_11 https://link.springer.com/chapter/10.1007/978-981-13-8102-7_...

nceqs3 6y ago

I believe that the government does own a portion of the IP. If you read patents filed by defense contractors and pharma/universities they often say something like this "This invention was made with Government support under Contract no. F29601-03-C-0191 awarded by the Air Force Research Laboratory, Kirtland AFB, N. Mex. The Government has certain rights in the invention." https://patentimages.storage.googleapis.com/f9/bc/b9/dd132ea998dccf/US8165178.pdf https://patentimages.storage.googleapis.com/f9/bc/b9/dd132ea...

hn_throwaway_99 6y ago
So then why is the government letting the company reap so much of the benefits of their IP?
- s1artibartfast 6y ago
  It depends on the contract made between the government and the developer before funding was issued.
- dmitrygr 6y ago
  So that when they want more research done, companies do not reply with: "you screwed us last time, NO THNX BYE" Basically the same reason that "I changed the deal, pray i do not change it further" is a strategy that works at most once.

MBCook 6y ago

> The cost, however, is steep — the list, or wholesale, price is $3,960 a month, or more than $47,500 a year. Remember though that this is a replacement for an existing drug therapy, not something totally new. Does anyone know how much the daily pills cost per month?

chefkoch 6y ago
It looks like conventional treatment is between 400$ and 1500$ per month.

m12k 6y ago

> can we create an independent non-profit which receives ownership, and whose charter aligns with actually treating as many people as possible? There is a proposal for such an entity: https://en.wikipedia.org/wiki/Health_Impact_Fund https://en.wikipedia.org/wiki/Health_Impact_Fund

reimertz 6y ago
Independent non-profits trying to fight for individuals in a capitalist-driven society seems to be doomed to fail. An depressing example; Insulin and how the inventors made sure to make the the process available to anyone; > The patent would not be used for any other purpose than to prevent the taking out of a patent by other persons. When the details of the method of preparation are published anyone would be free to prepare the extract, but no one could secure a profitable monopoly. How did that go? 1,000% price increase, accounting for inflation. (US numbers) Edit: Removed rant-driven generalization and miss-information regarding legal obligations. Thanks for checking me. I get to upset reading these things.
- lotsofpulp 6y ago
  > where corporations and their boards are legally bound to maximize profit, ignoring morals for profit. Where is this true? It’s not even a definable legal standard.
  - reimertz 6y ago
    You are definitely correct and thanks for pointing it out. Generalizations and miss-information doesn't help at all. I obviously need to go out for a walk before I comment on these type of news. It's super exciting but also extremely depressing since the ones who'd need this the most likely wont afford it.
    - peytn 6y ago
      The FDA approves ~40 drugs a year. If you want 40 new drugs a year, it unfortunately will cost somebody something to coordinate the large number of professionals over many years required by a modern development effort. Few drugs have been developed successfully on good intentions. I find excitement in the fact that we have found a way to get new treatments and cures. Other systems have been tried that weren’t so successful at pumping out new tech.

inasio 6y ago

In contrast, the napkin estimate for the cost of a year's worth of HIV drugs (latest generation integrase inhibitors) was 20K as of around 2 years ago, for western countries. Dolutegravir became generic, but prices likely won't change dramatically (specifically in western countries).

s1artibartfast 6y ago

>I'm glad that this works and that there is another, more convenient and effective treatment option. But shouldn't we have some setup where if tax dollars pay for the research, the government should own a share of the IP commensurate with their funding level, and should then be able to have some say in pricing? >Or, if you think that the government itself shouldn't own IP for a product on the market, can we create an independent non-profit which receives ownership, and whose charter aligns with actually treating as many people as possible? The current model of government funded research is like backing a Kickstarter because you want to see the product made, but get no direct benefit. It is made because we as a people think the world will be better off with the product, than without, and are willing to pay to make that happen. I think government co-venture is also great option, as long as it is negotiated up front and we can keep political corruption out of it. However, the question then becomes if drug development will dry up once the the government has locked down all the IP and nobody wants to partner with them. I think another good model would be seed support for independent non-profit pharmaceutical(s) charted to balance reinvested profits with social benefit (without government owning the IP). The question and risk here becomes one of oversight and accountability.

disabled 6y ago
Well, thanks to the US government, the very rare immune mediated neurological disease I have was discovered in the early 2000s, at the Mayo Clinic, via NIH grant funds. Because of the disease, I had uncontrollable orthostatic hypotension (low blood pressure when sitting/standing up), and I was passing out multiple times a day. I also was diagnosed with multiple types of arrhythmia. If it were not for the US government, I would not be alive. I am a dual US|EU citizen, and while being American is naturally a huge part of my identity, I would not be afraid to renounce my US citizenship. The only reason why I do not is because the US literally saved my life and others with the disease I have, worldwide.

offtop5 6y ago

3k month sounds about right for a chronic condition. Many many people pay at least this to stay alive. That said , Universal Health Care is needed for stuff like this to work. At 3k a month it makes the most sense to try and emigrate to a better country.

jacquesm 6y ago
That doesn't scale. If you push the cost of healthcare to other countries when it becomes too expensive instead of fixing the system in the country where you live then every other country with a better system's healthcare will collapse as well. Vote to improve the system where you live and make sure that your representatives realize that it could be them or their relatives in your situation. Quite a few countries have restrictions in this anyway, so whether it would even work in individual cases is another matter, for instance, here is Canada's provision: https://www.canada.ca/en/immigration-refugees-citizenship/services/immigrate-canada/inadmissibility/reasons/medical-inadmissibility.html https://www.canada.ca/en/immigration-refugees-citizenship/se...
- offtop5 6y ago
  You could also buy a 10$ bus ticket https://khn.org/news/americans-cross-border-into-mexico-to-buy-insulin-at-a-fraction-of-u-s-cost/ https://khn.org/news/americans-cross-border-into-mexico-to-b...
  - jacquesm 6y ago
    Before long they'll be smuggling insulin rather than cocaine if it isn't already happening.
    - disabled 6y ago
      They already do. People buy insulin off Craigslist, in a way that is similar to a drug deal, because they cannot get it elsewhere. They sit in the car while their “insulin dealer” brings them the insulin from Mexico/Canada and they pay them in cash. See: https://youtu.be/VLwDvK0j4DQ https://youtu.be/VLwDvK0j4DQ

refurb 6y ago

If, as a company, you have the option of charging $X if you accept gov’t funding or 400% * $X, doesn’t that sound like a great way to disincentivized taking govt funding? And as others have said gov’t funding tends to be a small fraction of total cost of R&D. And the funding tends to come very early - some professor is researching a new anti-viral and stumbles across a new molecule. It’s still several hundred million and a decade or more away from market.

TaylorAlexander 6y ago

Great interview on problems with intellectual property rights in the drug market. https://www.youtube.com/watch?v=u6OpapwQOks https://www.youtube.com/watch?v=u6OpapwQOks

jklein11 6y ago

Does anyone actually end up paying the 47,500 a year for the drug or is this some sort of gimmick on the part of the drug company when they negotiate reimbursement rates with CMS or other payers?

lwhi 6y ago
I'd imagine this cost would generally be borne by insurers or a government health care body.
- jklein11 6y ago
  I don't think either insurers or government health care bodies end up paying the sticker price. They usually have a contracted rate with the pharma companies that is less. Also, pharma companies have patient assistance programs which usually offer major discounts. I really don't know how effective this is and hhow many individuals get stuck with the full bill.
  - lwhi 6y ago
    So is the sticker price rarely paid?
retrac 6y ago
The standard brand name combination pills come to nearly $20,000 a year for the public insurers in Canada. They really do pay that much.
divbzero 6y ago
This is a fair point. Negotiated rates are usually lower and the cost should be spread across a pool of insured people, not all of whom have conditions that require ongoing high-cost therapies. Other comments in this thread also point out that there are alternative HIV treatments from Gilead and others that cost less. If the demand is not there for the new monthly injectable, ViiV will suffer for mispricing its own drug.

malandrew 6y ago

This is a brand new treatment. All things that are the product of cutting edge research and are difficult to get to market will be expensive. I'm taking an orphan drug that was approved in 2002/3 and costs more than this per month and last I checked the company that developed the drug was still in the red. This idea that drugs should be cheap and accessible the moment they are approved is incompatible with economic reality. You need a system with a profit motive so that many people and investors are motivated to invest their lives, careers and money in that market so we get progress year after year. This is a trolley car problem. On one track are all the people you can save in the present by making something immediately accessible to all regardless of the economic reality of those that produced the drug. On the other track all the the people that you can save long term by having an economically viable industry that can continue making advances that save lives in perpetuity.

disabled 6y ago
> This idea that drugs should be cheap and accessible the moment they are approved is incompatible with economic reality. I know that orphan drugs are lifesaving and it is life-and-death for the people who do and don’t receive them, but this is generally not true, including for orphan drugs. I know because I have 2 rare immune mediated neurological diseases affecting my peripheral nervous system and I take an orphan drug (blood product) known as subcutaneous immunoglobulin. Soliris, one of the world’s most expensive drugs, costing ~$600,000/year in countries with “socialized medicine” is estimated to cost less than 1% of that price to produce, as in less than $6,000/year. This is from industry insiders who have technical experience. Not only that, it is estimated that 80-90% of the work was discovered on public, government funds. See at 11:30 https://youtu.be/0uYCw5EDX8U https://youtu.be/0uYCw5EDX8U I have a background in applied science and I agree that this is the general ballpark case for orphan drugs, based on reading patents.

hnburnsy 6y ago

I worked for a drug distributor a long time ago and the joke for AWP (average wholesale price) is that is stood for Ain't What's Paid. Almost all drugs were negotiated down to 70-80% of AWP.

jeffreyrogers 6y ago

In the US most HIV drug manufacturers have coupons or other voucher programs that patients can use the reduce the price by a lot.

disabled 6y ago

There is a substantial percent of the population whose yearly medical care costs exceed their income. For example, about 7% of the world’s population collectively has some sort of a rare disease, which is theoretically treated with orphan drugs. There are also people who chronically live with cancer who end up living quite a long time. Diabetes, (type 1 or type 2) with or without complications, is quite expensive in the US. I personally have 2 rare immune mediated neurological diseases affecting my peripheral nervous system. The only medication that has kept me in pharmaceutical remission is subcutaneous immunoglobulin (intravenous immunoglobulin did not work), and I have tried 10 different treatments plus combinations of them. When I was living in the US, my private commercial insurance paid, under contract (not the amount that was being billed which was much higher!), $100 per gram. In other words, they were paying $23,500/month for my blood product or $282,000/year. In Europe, where I live now, the price goes for 40 Euro (about $50/gram). Anyways, you should watch this, “The World’s Most Expensive Drug” (which it no longer is), which is quite revealing: https://youtu.be/0uYCw5EDX8U https://youtu.be/0uYCw5EDX8U Alexion (a pharma company) started the trend and now the have drugs that cost millions per year over, that are required over the course of a lifetime: https://www.nytimes.com/2019/08/25/health/drug-prices-rare-diseases.html https://www.nytimes.com/2019/08/25/health/drug-prices-rare-d... There is a good documentary on it (requires a Hulu subscription): https://www.nytimes.com/2019/08/23/the-weekly/rare-diseases-orphan-drugs.html?action=click&module=RelatedLinks&pgtype=Article https://www.nytimes.com/2019/08/23/the-weekly/rare-diseases-... Anyways, the prices of these drugs are an insult to the intelligence of a lot of scientists and (formal) engineers. I also have type 1 diabetes, and because of my training in electrical engineering, I could tell by reading patents on analog insulin patents that a 10 mL bottle of insulin cost somewhere between $1-$10 to produce. Turns out that it costs between $3-$6 to produce. At its worse, in the US, it cost $350 per 10 mL vial for analog insulin. Anyways, the best way of dealing with this situation is by having even the most disabled people working to offset these prices, along with having universal healthcare with price controls. Unfortunately worker protection against discrimination in the US is very poor and when your health benefits are tied to work then it just does not work. Patent law also needs to be reformed, and if the prices are obscene and unjustifiable, then they should be seized.

tehjoker 6y ago

This video by Noam Chomsky on science funding explains this better than I can: https://www.youtube.com/watch?v=Av96iIRa0f8 https://www.youtube.com/watch?v=Av96iIRa0f8

Animats 6y ago

The cost, however, is steep — the list, or wholesale, price is $3,960 a month, or more than $47,500 a year. The list price for the one-time initiation dose is $5,490. Supporting a subculture that's heavily into anal sex is extremely expensive.

LockAndLol 6y ago

It's been authorized in the EU since last year [0] and I bet it'll be partially or completely reimbursed by health insurances. 0: https://www.ema.europa.eu/en/medicines/human/EPAR/rekambys#product-information-section https://www.ema.europa.eu/en/medicines/human/EPAR/rekambys#p...