5 ms·

Trikafta is a real breakthrough for CF patients. What's not mentioned is the cost - about $300 000 per person per year. [1] In 2037 the patent will run out, an

Trikafta is a real breakthrough for CF patients. What's not mentioned is the cost - about $300 000 per person per year. [1] In 2037 the patent will run out, and the generic price will likely be 90% less. Fortunately, for Americans with good-enough health insurance, it's covered, so ... yay? For those without insurance, or in other countries where $300k is basically unaffordable, well bummer for you, you'll be the last generation to die of it. I get the insane costs, and risks, of developing these things. I get that the profit motive is what drives there to be any research at all in pharma. I get that the price has to be high for everyone, or insurance companies will balk. And yet, even knowing all that, there's a sour taste when we -could- (literally) save lives, but, well, money first ya-know... I don't have an answer to this issue- there are downsides to all proposals I've heard. But this approach seems, well, pretty harsh. [1] https://www.statnews.com/2023/11/03/trikafta-cystic-fibrosis-price-colorado-prescription-drug-affordability-board/#:~:text=Trikafta%20is%20taken%20by%20only,drugs%20from%20their%20PDAB%20evaluations https://www.statnews.com/2023/11/03/trikafta-cystic-fibrosis....

elektor 3y ago
"In 2037 the patent will run out, and the generic price will likely be 90% less." Unfortunately, that's not guaranteed to bring a price drop. Humira is a good example of that; it recently went generic but much of the savings went to higher rebates to pharmacy benefits managers. Some reading for anyone curious: https://www.reuters.com/business/healthcare-pharmaceuticals/abbvies-humira-gets-us-rival-costs-could-stay-high-2023-01-31/ https://www.reuters.com/business/healthcare-pharmaceuticals/...
- amplicons4ever 3y ago
  You're talking apples and oranges... Humira is a monoclonal antibody (a biologic drug), not a small molecule. Biologics require cell culture systems and a completely different manufacturing process than small molecules, and are very complex drugs. The "generics" (called biosimilars) aren't significantly cheaper because they're simply very expensive to manufacture at scale. Humira or its "generics/biosimilars" will never be cheap. It's physically impossible with today's bio processing technology. Trikafta is a mix of three small molecules, which are manufactured in large chemical batches and are the more traditional class of drugs. Many even have total synthesis pathways known which means you can basically make them by the train car scale for cheap. When the patent on Trikafta runs out, it'll be very cheap. I'll note that vanishingly few patients ever pay the full list price in the US--if you have insurance, the copay is small. Your insurance pays (as they should, that's why you pay them premiums!). The company even pays the co-pay in most cases so the actual cost to patients in many cases is $0. If you truly need it and don't have insurance, the company provides it for basically free with a patient assistance program, it's there on their website. Kudos to the scientists who invented this, I don't feel bad for the insurance companies really, they charge their premiums and it's their responsibility to the policyholders to pay the applicable fees for care. *edit: typo
  - Scoundreller 3y ago
    What I like to say about pharma, especially small-molecule, is that the first dose costs $billions, and the rest a few cents.
  - maxerickson 3y ago
    I don't feel bad for the insurance companies either, but it is the case that they get their money from the people they cover, expensive treatments will drive up overall premiums.
  - pradn 3y ago
    Humira's biosimilars are roughly 20% of the cost of name-brand Humira ($600/mo). It can even be down to 10% of the original cost, or lower, in some shops. You can buy a month's supply for ~75 from an Indian pharam supplier online, for example. The slight kicker is that the biosimilars are not 100% the same (fat) molecule as the original adalimumab. Insurance companies are starting to say they wont cover name-brand Humira without a strong doctor's note. Still, the price of the drug went down from being completely unaffordable without insurance to the price of an car payment. It's still expensive, but much better than before. You're not as tied to your company providing good insurance, for example.
    - pradn 3y ago
      Oops: Humira ($600/mo) -> Humira ($6000/mo)
xenospn 3y ago
In other countries this will be covered by the social safety net (that doesn’t exist in the US, hence the need for “good-enough health insurance”).
- BurningFrog 3y ago
  Or the country decides to not import the medicine due to the cost.
- ploika 3y ago
  Not necessarily. I don't know about other countries, but I remember there being a campaign here in Ireland (with one of the highest rates of cystic fibrosis in the world) to get Orkambi covered under the Drug Payment Scheme when it was new.
- paulpauper 3y ago
  'other countries' would not even developed the drug...Vertex, a US pharma company, developed Trikafta. No one is paying the 300k out of pocket. The high price incentivizes research. Expensive drugs seems like a tradeoff for more innovation.
  - bdcravens 3y ago
    I literally just received a box of Trikafta on Wednesday. My copay was $150 on a $31,855 retail price. (I actually don't pay the $150, due to Vertex's copay assistance)
- astrange 3y ago
  The socialized medicine systems don't have infinite money just like private health systems don't; if they can't negotiate a cheaper price for the medicine they won't purchase it. (It's not "health insurance". Insurance covers unpredictable outcomes; needing a medicine every month for the rest of your life is not unpredictable.)
- refurb 3y ago
  It’s not. That’s what a lot of people don’t understand. These drugs from Vertex started being approved in 2014. US insurers pretty much covered them from approval. Even Medicaid (health insurance for low income) started paying for it. Other countries? The UK just started in 2020. In Canada? Last I checked only 5 of the 10 provinces paid for it and only if you’re under 18. The US healthcare is expensive for a lot of reasons, and one of them is new technology gets paid for really quickly.
ForHackernews 3y ago
It is mentioned. Quoting directly from this piece... > Or stopped being covered by insurance? Trikafta’s sticker price is more than $300,000 a year. Insurance typically covers most of that cost—minus what can be significant co-pays and deductibles—and Vertex offers co-pay assistance. But patients’ lives ultimately depend on decisions made by nameless bureaucrats in rooms far away: Insurance plans can suddenly change what they cover, and in 2022, Vertex announced that it would substantially reduce its financial assistance.
- Aloha 3y ago
  I suspect very strongly at 300k a year, its still cheaper than treating CF via existing means.
  - bdcravens 3y ago
    Yes, I (CF patient) just had a one-week hospital stay, and right now the (retail) price of that vacation is around $100k the last time I looked at all of the bills. (fortunately I have amazing insurance)
    - Aloha 3y ago
      When I saw you mention multiple hospital stays a year, I went "well a single admission runs about 20k" and extrapolated from there.
  - Sammi 3y ago
    Of course. All medicine producers know to price their product just below the alternative.
nwiswell 3y ago
In many other countries, patents do not apply to personal use, where there is no sale. Since Trikafta is a blend of 3 small-molecule drugs, is it possibly feasible to publish a do-it-yourself synthesis process? Or perhaps the community could even come together to set up a lab, where individuals could travel and go through the motions to produce their own? I recognize this isn't ideal, but it might be legal...
- deadbabe 3y ago
  If you’re going to do all that why bother with legality, just push pills on a black market.
  - A_D_E_P_T 3y ago
    Yeah. In all seriousness, you can buy the APIs directly from China/India and compound them yourself. It's easy and dirt cheap, in most cases. This is typically how underground steroid labs and other illicit pharmacies work. It's in some cases how legitimate compounding pharmacies work. So how do you know what you're getting is pure, or even real? Simple, before shipping it to the US, you send it over to an analytical lab in China and have them run GC/MS or LC/MS on the chemical raw material. Since it's supposedly a pure compound, that should be easy, and there's very rarely any ambiguity as to the results. This also ensures that you're not inadvertently importing anything on the DEA's scheduled list.
    - nwiswell 3y ago
      This feels very Dallas Buyer's Club. I assume communities exist on the Internet for this kind of "drug piracy"?
      - A_D_E_P_T 3y ago
        Yeah, IRL too. 5-10 years ago there were some biohacking collectives around the Bay Area that did everything from pharmaceuticals to experiments with CRISPR. I don't know if they're still around -- I left that scene when I left the USA a few years ago -- but if you're in the area you might want to give it a look. (As an aside, I heard that a few scene-adjacent people have recently gotten gene-mod therapy; Patri Friedman, for instance, received follistatin therapy.) Nootropics were a pretty popular trend around the same time, and I knew a lot of guys who would import weird drugs and peptides from Russia and China. It's the same sort of procedure I outlined in my last post, in that you're ordering drugs or drug-active-ingredient-powder from abroad... And then hopefully testing it. Roughly 10 years ago, when [redacted breakthrough drug] was released, I helped some friends set up a pirate pharmacy. Those were good times.
0xB31B1B 3y ago
drugs are priced differently country to country and the price has nothing to do with the unit cost to manufacture. The US is the least regulated pharmaceuticals market in the world and drugs here usually cost significantly more than drugs in other locals. For example semaglutide/ozempic costs like 1300/month in the US, but only 100-200/month in European countries. Also, the "1300/month" cost in the US is only paid by people who are paying cash and not covered by insurance, if the drug is covered by the patients insurance than the Pharmacy benefits manager usually pays a fraction of the 1300/month price as it is a "bulk negotiated discount, so they often pay 200-300 USD, the actuall price in these deals is a closely guarded trade secret.
- glp1guide 3y ago
  So note that although Semaglutide/Ozempic cost that amount retail, most are absolutely not paying that price. https://glp1.guide/content/glp1-pricing-2024-02 https://glp1.guide/content/glp1-pricing-2024-02 Of course, insurers are struggling to not cover the bill, and although it's in the medicaid list it's up to states to choose whether to cover it or not
bdcravens 3y ago
Vertex is very good about providing programs to put it in the hands of those who need it. I have great insurance and a great income, and they even apply deductible assistance to me. In the online CF communities I'm a part of, I've never heard of anyone who couldn't get access to the medication (aside from the country they're in not approving it) (I'm in the US so my perspective is probably skewed)
cbeach 3y ago
I've seen conversations like this before, regarding the heavy cost that Big Pharma levies on treatments for major diseases. And US companies frequently come up in these discussions. But the alternative, without the massive cashflows, is a world where the research never happens, and the diseases haunt us forever. The Big Pharma treatments will eventually become public domain, and may inspire other cheaper treatments prior to that. The fact that these conversations come up frequently is a symptom of the fact that Big Pharma is frequently doing fantastic things. Curing diseases that have plagued humanity for millenia and killed millions. We have a very bright future. But the future is not free of charge, as we'll continue to require a lot of medical research, and medical researchers have families to feed, like the rest of us. Medicine costs money - there's no escaping it. In the UK, we sometimes mistakenly imagine that our socialised healthcare system is "free." It's not. It's one of the most expensive in the world, and employs over 2 million people. The component of tax that I paid to fund the National Health Service was £8919 last year - the largest single expenditure of my taxes, and vastly more than I'd need to spend to get private healthcare. So while American medical pricing is scary and sometimes ruthless, I think we need to put things in perspective and recognise their leadership in medical research - without which, we'd all be in a worse situation.
- kelnos 3y ago
  What about direct government funding? Isn't that a reasonable alternative? Maybe not a politically-popular one, but I wouldn't be surprised if health care overall would be cheaper under a system where pharma research is done with public money, and then isn't allowed to be patented. Might even in save enough money to avoid much in the way of extra taxes to fund it. Hell, a lot of medical research is funded (in part) by public dollars, and then the results get locked up behind patents for years, which is gross.
  - derivative7 3y ago
    Most taxpayers don't have cystic fibrosis and hence don't want to pay to have it cured. Not feasible. This hypothetical is kind of lame.
google234123 3y ago
Take away the money and watch the development go away ;)

elektor 3y ago

"In 2037 the patent will run out, and the generic price will likely be 90% less." Unfortunately, that's not guaranteed to bring a price drop. Humira is a good example of that; it recently went generic but much of the savings went to higher rebates to pharmacy benefits managers. Some reading for anyone curious: https://www.reuters.com/business/healthcare-pharmaceuticals/abbvies-humira-gets-us-rival-costs-could-stay-high-2023-01-31/ https://www.reuters.com/business/healthcare-pharmaceuticals/...

amplicons4ever 3y ago
You're talking apples and oranges... Humira is a monoclonal antibody (a biologic drug), not a small molecule. Biologics require cell culture systems and a completely different manufacturing process than small molecules, and are very complex drugs. The "generics" (called biosimilars) aren't significantly cheaper because they're simply very expensive to manufacture at scale. Humira or its "generics/biosimilars" will never be cheap. It's physically impossible with today's bio processing technology. Trikafta is a mix of three small molecules, which are manufactured in large chemical batches and are the more traditional class of drugs. Many even have total synthesis pathways known which means you can basically make them by the train car scale for cheap. When the patent on Trikafta runs out, it'll be very cheap. I'll note that vanishingly few patients ever pay the full list price in the US--if you have insurance, the copay is small. Your insurance pays (as they should, that's why you pay them premiums!). The company even pays the co-pay in most cases so the actual cost to patients in many cases is $0. If you truly need it and don't have insurance, the company provides it for basically free with a patient assistance program, it's there on their website. Kudos to the scientists who invented this, I don't feel bad for the insurance companies really, they charge their premiums and it's their responsibility to the policyholders to pay the applicable fees for care. *edit: typo
- Scoundreller 3y ago
  What I like to say about pharma, especially small-molecule, is that the first dose costs $billions, and the rest a few cents.
- maxerickson 3y ago
  I don't feel bad for the insurance companies either, but it is the case that they get their money from the people they cover, expensive treatments will drive up overall premiums.
- pradn 3y ago
  Humira's biosimilars are roughly 20% of the cost of name-brand Humira ($600/mo). It can even be down to 10% of the original cost, or lower, in some shops. You can buy a month's supply for ~75 from an Indian pharam supplier online, for example. The slight kicker is that the biosimilars are not 100% the same (fat) molecule as the original adalimumab. Insurance companies are starting to say they wont cover name-brand Humira without a strong doctor's note. Still, the price of the drug went down from being completely unaffordable without insurance to the price of an car payment. It's still expensive, but much better than before. You're not as tied to your company providing good insurance, for example.
  - pradn 3y ago
    Oops: Humira ($600/mo) -> Humira ($6000/mo)

xenospn 3y ago

In other countries this will be covered by the social safety net (that doesn’t exist in the US, hence the need for “good-enough health insurance”).

BurningFrog 3y ago
Or the country decides to not import the medicine due to the cost.
ploika 3y ago
Not necessarily. I don't know about other countries, but I remember there being a campaign here in Ireland (with one of the highest rates of cystic fibrosis in the world) to get Orkambi covered under the Drug Payment Scheme when it was new.
paulpauper 3y ago
'other countries' would not even developed the drug...Vertex, a US pharma company, developed Trikafta. No one is paying the 300k out of pocket. The high price incentivizes research. Expensive drugs seems like a tradeoff for more innovation.
- bdcravens 3y ago
  I literally just received a box of Trikafta on Wednesday. My copay was $150 on a $31,855 retail price. (I actually don't pay the $150, due to Vertex's copay assistance)
astrange 3y ago
The socialized medicine systems don't have infinite money just like private health systems don't; if they can't negotiate a cheaper price for the medicine they won't purchase it. (It's not "health insurance". Insurance covers unpredictable outcomes; needing a medicine every month for the rest of your life is not unpredictable.)
refurb 3y ago
It’s not. That’s what a lot of people don’t understand. These drugs from Vertex started being approved in 2014. US insurers pretty much covered them from approval. Even Medicaid (health insurance for low income) started paying for it. Other countries? The UK just started in 2020. In Canada? Last I checked only 5 of the 10 provinces paid for it and only if you’re under 18. The US healthcare is expensive for a lot of reasons, and one of them is new technology gets paid for really quickly.

ForHackernews 3y ago

It is mentioned. Quoting directly from this piece... > Or stopped being covered by insurance? Trikafta’s sticker price is more than $300,000 a year. Insurance typically covers most of that cost—minus what can be significant co-pays and deductibles—and Vertex offers co-pay assistance. But patients’ lives ultimately depend on decisions made by nameless bureaucrats in rooms far away: Insurance plans can suddenly change what they cover, and in 2022, Vertex announced that it would substantially reduce its financial assistance.

Aloha 3y ago
I suspect very strongly at 300k a year, its still cheaper than treating CF via existing means.
- bdcravens 3y ago
  Yes, I (CF patient) just had a one-week hospital stay, and right now the (retail) price of that vacation is around $100k the last time I looked at all of the bills. (fortunately I have amazing insurance)
  - Aloha 3y ago
    When I saw you mention multiple hospital stays a year, I went "well a single admission runs about 20k" and extrapolated from there.
- Sammi 3y ago
  Of course. All medicine producers know to price their product just below the alternative.

nwiswell 3y ago

In many other countries, patents do not apply to personal use, where there is no sale. Since Trikafta is a blend of 3 small-molecule drugs, is it possibly feasible to publish a do-it-yourself synthesis process? Or perhaps the community could even come together to set up a lab, where individuals could travel and go through the motions to produce their own? I recognize this isn't ideal, but it might be legal...

deadbabe 3y ago
If you’re going to do all that why bother with legality, just push pills on a black market.
- A_D_E_P_T 3y ago
  Yeah. In all seriousness, you can buy the APIs directly from China/India and compound them yourself. It's easy and dirt cheap, in most cases. This is typically how underground steroid labs and other illicit pharmacies work. It's in some cases how legitimate compounding pharmacies work. So how do you know what you're getting is pure, or even real? Simple, before shipping it to the US, you send it over to an analytical lab in China and have them run GC/MS or LC/MS on the chemical raw material. Since it's supposedly a pure compound, that should be easy, and there's very rarely any ambiguity as to the results. This also ensures that you're not inadvertently importing anything on the DEA's scheduled list.
  - nwiswell 3y ago
    This feels very Dallas Buyer's Club. I assume communities exist on the Internet for this kind of "drug piracy"?
    - A_D_E_P_T 3y ago
      Yeah, IRL too. 5-10 years ago there were some biohacking collectives around the Bay Area that did everything from pharmaceuticals to experiments with CRISPR. I don't know if they're still around -- I left that scene when I left the USA a few years ago -- but if you're in the area you might want to give it a look. (As an aside, I heard that a few scene-adjacent people have recently gotten gene-mod therapy; Patri Friedman, for instance, received follistatin therapy.) Nootropics were a pretty popular trend around the same time, and I knew a lot of guys who would import weird drugs and peptides from Russia and China. It's the same sort of procedure I outlined in my last post, in that you're ordering drugs or drug-active-ingredient-powder from abroad... And then hopefully testing it. Roughly 10 years ago, when [redacted breakthrough drug] was released, I helped some friends set up a pirate pharmacy. Those were good times.

0xB31B1B 3y ago

drugs are priced differently country to country and the price has nothing to do with the unit cost to manufacture. The US is the least regulated pharmaceuticals market in the world and drugs here usually cost significantly more than drugs in other locals. For example semaglutide/ozempic costs like 1300/month in the US, but only 100-200/month in European countries. Also, the "1300/month" cost in the US is only paid by people who are paying cash and not covered by insurance, if the drug is covered by the patients insurance than the Pharmacy benefits manager usually pays a fraction of the 1300/month price as it is a "bulk negotiated discount, so they often pay 200-300 USD, the actuall price in these deals is a closely guarded trade secret.

glp1guide 3y ago
So note that although Semaglutide/Ozempic cost that amount retail, most are absolutely not paying that price. https://glp1.guide/content/glp1-pricing-2024-02 https://glp1.guide/content/glp1-pricing-2024-02 Of course, insurers are struggling to not cover the bill, and although it's in the medicaid list it's up to states to choose whether to cover it or not

bdcravens 3y ago

Vertex is very good about providing programs to put it in the hands of those who need it. I have great insurance and a great income, and they even apply deductible assistance to me. In the online CF communities I'm a part of, I've never heard of anyone who couldn't get access to the medication (aside from the country they're in not approving it) (I'm in the US so my perspective is probably skewed)

cbeach 3y ago

I've seen conversations like this before, regarding the heavy cost that Big Pharma levies on treatments for major diseases. And US companies frequently come up in these discussions. But the alternative, without the massive cashflows, is a world where the research never happens, and the diseases haunt us forever. The Big Pharma treatments will eventually become public domain, and may inspire other cheaper treatments prior to that. The fact that these conversations come up frequently is a symptom of the fact that Big Pharma is frequently doing fantastic things. Curing diseases that have plagued humanity for millenia and killed millions. We have a very bright future. But the future is not free of charge, as we'll continue to require a lot of medical research, and medical researchers have families to feed, like the rest of us. Medicine costs money - there's no escaping it. In the UK, we sometimes mistakenly imagine that our socialised healthcare system is "free." It's not. It's one of the most expensive in the world, and employs over 2 million people. The component of tax that I paid to fund the National Health Service was £8919 last year - the largest single expenditure of my taxes, and vastly more than I'd need to spend to get private healthcare. So while American medical pricing is scary and sometimes ruthless, I think we need to put things in perspective and recognise their leadership in medical research - without which, we'd all be in a worse situation.

kelnos 3y ago
What about direct government funding? Isn't that a reasonable alternative? Maybe not a politically-popular one, but I wouldn't be surprised if health care overall would be cheaper under a system where pharma research is done with public money, and then isn't allowed to be patented. Might even in save enough money to avoid much in the way of extra taxes to fund it. Hell, a lot of medical research is funded (in part) by public dollars, and then the results get locked up behind patents for years, which is gross.
- derivative7 3y ago
  Most taxpayers don't have cystic fibrosis and hence don't want to pay to have it cured. Not feasible. This hypothetical is kind of lame.

google234123 3y ago

Take away the money and watch the development go away ;)