[bruce511]

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....

[elektor]

"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/...

[amplicons4ever]

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]

What I like to say about pharma, especially small-molecule, is that the first dose costs $billions, and the rest a few cents.

[pradn]

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]

Oops: Humira ($600/mo) -> Humira ($6000/mo)

[maxerickson]

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.

[bdcravens]

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)

[0xB31B1B]

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]

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

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

[cbeach]

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]

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.

[cbeach]

Having the government direct funds and choose winners and losers seems a lot more dangerous than leaving it to free market forces.

It's easier to corrupt one or two government officials than it is the entire international capital marketplace.

[derivative7]

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.

[actuallyalys]

The U.S. government already funds a lot of research including some on conditions (or non-medical problems) that don’t affect the majority so that doesn’t seem to be an actual barrier. Polls tend to show Americans support existing funding [0].

Obviously there is a limit to how much spending the public will support, but I don’t think it’s a complete nonstarter.

[0]: https://www.pewresearch.org/short-reads/2018/07/03/americans...

[matthewtse]

I love this reply.

It's a particularly touchy subject because it involves people's health and the ability/inability to pay for it.

But as a sufferer of a debilitating disease with a miracle drug that costs an arm and a leg, I've become a convert to the US pharma-industrial complex. These drugs take billions of dollars and decades to research--that funding/development isn't going to happen without venture capitalists who shoulder that risk for the profit reward. An equal number of pharma venture capitalists lose all their money, researching dead-end drugs.

I'm incredibly blessed to have both a cure invented during my lifetime and the means to pay for it. But even if I lacked the means, I would still infinitely prefer a world where a cure exists that I need to somehow access, as opposed to a hopeless world with no cure.

[elliotto]

It feels like there's a lack of imagination here. Could you conceive of a world that was successful in its research of drugs, but was propped up by an economic model other than pharma venture capitalism?

[epivosism]

Freedom of choice means you have the right to try to create such a system. As other people can try what they want, VC funding, astrology, etc. It's all legal and competes.

But, if someone is selling a system which doesn't exist yet, but is supposed to be better, but that will only work if we also shut off the one working system first, before knowing... well, I'm skeptical.

[nwiswell]

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]

If you’re going to do all that why bother with legality, just push pills on a black market.

[A_D_E_P_T]

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]

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]

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.

[nwiswell]

That's really cool. I don't have a bio/pharma technical background but I'm very sympathetic to the scene and the ethos so I'll have to check it out.

[ForHackernews]

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]

I suspect very strongly at 300k a year, its still cheaper than treating CF via existing means.

[bdcravens]

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]

When I saw you mention multiple hospital stays a year, I went "well a single admission runs about 20k" and extrapolated from there.

[Sammi]

Of course. All medicine producers know to price their product just below the alternative.

[google234123]

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

[xenospn]

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”).

[refurb]

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.

[Scoundreller]

Looks like every province pays for Trikafta now: https://www.cysticfibrosis.ca/our-programs/advocacy/access-t...

Of course, it's Canada, so you may have private drug coverage and then it depends on province whether you fall back to the public coverage if the private payor doesn't cover it.

> The third-generation of modulators, Trikafta, is a new transformational drug that can treat up to 90% of Canadians with cystic fibrosis. Trikafta was approved for sale in Canada on Friday, June 18th, 2021, by Health Canada for people aged 12 and up with cystic fibrosis and at least one F508del mutation and on April 20, 2022 for those aged six and up. As of September 13, 2022, every province, territory and federal drug program is funding this drug for those six and up. Unfortunately, it is not accessible to all who can benefit from it, and therefore our advocacy work continues

https://www.cysticfibrosis.ca/our-programs/advocacy/access-t...

[ploika]

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.

[astrange]

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.)

[paulpauper]

'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]

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)

[umanwizard]

No country pays unlimited amounts of public money for brand new drugs.

[averageRoyalty]

I just checked, $30 a refill in Australia (or $7 if you're low income). No limits, just whatever the doctor prescribes.

[BurningFrog]

Or the country decides to not import the medicine due to the cost.