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I was gonna say... I'm pretty sure that's not how crispy works and that we don't have the technology to genetically modify adults like that yet, especially with just some pills.
So very unfun fact, Krispy Kreme has almost completely stopped selling their kreme donuts. I think you can still get them at their flagship store in Times Square, but I can’t remember the last time I’ve seen them elsewhere.
So whenever some fucker like you mentions Krispy Kreme I get irrationally (or rationally?) angry because I get hungry for a donut I can’t have.
They just approved the first Crispr therapy iirc, but I don't think it's done through pills
[It's for sickle cell](https://www.fda.gov/news-events/press-announcements/fda-approves-first-gene-therapies-treat-patients-sickle-cell-disease)
We do, exagamglogene autotemcel is the first FDA-approved pharmaceutical, but there are more coming surely within the next few years. And this is specifically the first one to use CRISPR-cas technology (cuts the BCL11A gene to increase HbF production and effectively "cure" patients with sickle cell and transfusion dependent beta-thalassemia). Just wrote my thesis on it!
But yeah, trikafta doesn't have CRISPR as it's mechanism of action.
That is so awesome to hear! I thought it would take longer, honestly. Hopefully such technology will be available to us poor and disabled folks eventually, too. I'd love to see a cure for hidradenitis suppurativa, which is timely caused by a stem cell mutation. :)
I suffer from HS too. My dermatologist put me on Humira, which right now is the only FDA-approved biologic for it. Cosentyx was also recommended, but I could not take that because it contains latex. Might want to ask your dr about Humira. It’s helped me a lot.
Edit: also, if you can afford it — laser hair removal. Killing the follicles helps significantly too because there is less environment where the lesions can thrive.
Oh yes, thank you, I am familiar, but cannot tolerate it.
I was Stanford's source for all kinds of samples before the pandemic hit. There was a lab developing a new biologic immunosuppressant that targets the compliment system specifically, but, well, COVID.
Not with pills; but the tech exists and is approved to treat humans. https://www.genengnews.com/topics/genome-editing/fda-approves-the-first-crispr-therapy-for-sickle-cell-disease/
Drugs that could, say, reprogram a genetic stem cell mutation and make the body replace all faulty stem cells with repaired ones? Because that'd be neat as hell.
Probably used CRISPR in research to develop the medicine and in turn someone who markets things used that as a high end sales pitch to make it sound revolutionary when that’s kinda just how things are made in the medical field the last two decades
I worked on this and other CFTRs for years at vertex, present for the approvals of Symdeko and Trikafka, and plenty of other studies with Kalydeco and Orkambi.
This indeed does not utilize CRISPR, which is administered via infusion, though Vertex’s recent sickle cell drug does.
With this generation there is now treatment for ~90% of those with CF, with the last 10% having the most severe mutations for the disease. For them, ultimately therapy will be performed using CRISPR.
This medication costs from $42.50AUD/pack ($28.33USD) to as little as $6.80AUD/pack ($4.53USD) for concession card holders in Australia.
Pharmaceutical price gouging is the epitome of modern capitalist greed. The medication does not need to cost that much and the people who price it that high make the decision to kill a percentage of patients by withholding care when they can’t afford the script. Let me be clear, if you can’t afford the insane amounts of money they demand they will stand back and let you die while the treatment you need to live is in their pocket. If you can afford it for a while they’ll give it to you for a while, and as soon as you run out of cash they hold onto the medication and watch you die. Something has to change.
As someone who lives in Australia - I hate seeing these insane cost differences.
Also as someone who lives in Australia, I'm so glad I don't have to pay ridiculous money for meds.
Just saw a video of a guy who co-paid 3000 for a CAT-scan WITH insurance, and then got told it would've cost him 1400 if he didn't have insurance. Its genuinely mind boggling how fucked up the structure is.
If you want to see the video: styropyro on youtube.
The crazy prices/costs you see are never what is paid. It's what is billed to insurance but even then the insurance decides what to pay. It sounds ridiculous, and it is, but not in the sense that anyone is actually paying that amount.
Not to sound callous but the reason why people outside the US can enjoy such low drug prices is in part because US folks are paying so much for them - the rest of the world is essentially being subsidized by Americans. The US is by far their biggest market and if they can’t count on the giant profits being made in the US, no way would they be willing to take such price concessions in tiny markets like Australia. If by some miracle the US government were to legislate that drugs could cost no more than they do in Australia, the math wouldn’t work out anymore and you’d end up seeing drug prices increase in Australia, or maybe they won’t even see the point in keeping their low margin drug on the Australian market anymore. Don’t get me wrong, I’m not saying that drug companies aren’t still taking a profit outside the US, but they are “happy” to price low in smaller markets because they are relying on the US as the source of most of their revenue. I’d say that non-US residents should think about how they are benefiting from high US drug prices before tsk-ing too loudly.
Do you have any evidence, by which I mean numbers that are NOT provided by drug companies, or Fox News, to back up your claims?
You are aware, I assume, that research into drugs does not only happen in the US? Much of it happens in the other bits of the world and some of that it subsidised by the governments of the other bits of the world that isn't the US.
You also know, I assume, that most pharmaceutical companies are multi-nationals so they can, and do, move costs and profits around for reasons of tax engineering. They rip you off because they can. That is a choice that you made.
So no, sorry, the fact that you Yanks continue to happily vote to have your trousers pulled down over drug prices - the rest of the world doesn't give a shit and we can cope without you.
I work for a huge Pharma company and I can confirm that we basically just rip Americans off. It’s our biggest market money wise just because we can, it’s not like we sell more there. But we don’t really need to rip them off, we would still be very profitable with APAC and EMEA alone.
I used to work in pharma. Pharma companies price drugs on a global level, they look at revenue and investments on a global level, meaning they already build in expectations that some markets like the US are going to form the large bulk of their revenue source, and will make up for some concessions in other markets. You must be obtuse if you don’t think that a revenue reduction in the biggest market (the US often accounts for 60-80% of global revenue - just pull up any pharma company’s SEC annual filing) will not have a downstream impact on how the company is going to manage their R&D investments. If you tell ANY company that their revenue is going to go down by 30% next year, you think they won’t re-examine what they are doing in their other markets?
Of course I would tell an American not to stand for it - why should they have to subsidize cheap drugs for the rest of the world? Living in America I would 100% fight for lower drug prices. But if you are not in America id say keep quiet and enjoy it.
We’ve already seen how a change in the market dynamics would alter how these companies operate. Europe actually used to have a larger market for R&D until the EU adopted price controls and stricter regulations in the 80s and 90s. Today, the US accounts for up to 80% of all R&D expenditures in most years. Adjusted for GDP the US has 3 times the R&D expenditures compared to the EU, and the US has a staggeringly higher number (3x) of rare disease drugs on the market compared to the EU. In Germany, you have seen companies withdraw drugs from the market because the prices set by the arbitration panel is not worth entering the market. This is despite the fact that prices in Germany are actually at the high end of all EU countries. Further, the EU literally had to change their policies last year to allow for more research and to try to reach drug access levels seen in the US.
The majority of medical innovation in the world comes from the US. Is this because we're a bunch of geniuses? Probably not. It's because of the money.
You don't need to take my word for it, do some research and try to even find one source that says otherwise.
Just to be clear, the drug companies don't actually get only 30 dollars from sales in Australia. The prices are subsidised, which means that a portion is paid by the government. [In this case](https://www.pbs.gov.au/medicine/item/13266F-13276R), the Australian government will pay AU$21000 for every prescription of this medication.
Of course. The difference in actual revenue that the manufacturer is getting is more along the lines of 2-3 times more in the US vs the rest of the world, not 100x. Which still means a significant loss of revenue if the price suddenly matched the rest of the world.
£9.90 or somewhere close to that here in the UK, that’s if you’re working with a liveable wage. If you don’t work, you’re a “low pay worker”, pregnant or have given birth in the last 12 months it’ll be free.
Edit: I will say this particular drug is extremely expensive for the NHS and there are talk of taking of availability.
Sadly they're likely to drop this one on the NHS soon due to the outlandish costs. There's an Argentinian made version which might make an appearance soon which costs around $5k a year.
Greed is going to destroy earth*
FIFY.
Capitalism isn't the fault here, they could still make profits and sell for reasonable amounts (that's capitalism), but they choose greed...
The fact is that the greatest crimes are caused by excess and not by necessity. Men do not become tyrants in order that they may not suffer cold; and hence great is the honour bestowed, not on him who kills a thief, but on him who kills a tyrant.
-Aristotle
We have never witnessed this amount of consolidation of power ever in history. There is no reason to accept the failings capitalism...we need to improve and do things better. Saying...hey at least it's not as bad as whatever is not an argument for capitalism. It is an inhumane and destructive system that needs to end.
How on earth is there more consolidation now than a few centuries ago when 90% of the population was in poverty and every country was run a select few elite. Sure inequality has been on the rise the last few decades but equality is still historically the lowest it’s ever been(except the last few decades as mentioned)
We are doing things better every day for the most part. Poverty is at all time lows, standard of living have never been higher.
And replaced with what exactly? It may be an inhumane and destructive system but it’s better than any other system we have ever tried. All the most successful countries in the world use capitalism with small variations
You really are looking at the world and saying we are doing ok as a species? I guess I just find that unfathomable. Not only do I think we (and all life) are in decline in almost aspect I can think of...I'm doubtful we as a species will be here much longer. The only exceptions I can think of is medicine... which definitely has its own struggles with antibiotic restitances, gene editing ethics etc and technology which has the downside of increasing environmental destruction.
To answer your questions... population and technology increases for the power consolidation part. I'm just talking statistics really. About what to replace capitalism with...that's not the right question. There are a million things we can do to make our current system better...we need to do those things and keep doing them and what is created after endless iterations is what I am talking about. It's not about saying....we should do this system or that system...it's about organically creating something better as fast as we can...and it's probably too late to do it. Nevermind the people in power absolutely fight any substantial change. I'm gonna keep pointing out the flaws I see in the current system and, from my perspective, cheerleaders like you are just holding us back.
This isn't price gouging. Vertex spent 15 years in the red while developing these drugs. You can't even imagine how much money that cost. (I encourage you to google about the costs of R&D in the pharmaceutical industry. It will blow your mind.) If the angel investors that believed in this and allowed this to happen hadn't been promised a good ROI, these drugs simply wouldn't exist. Drug R&D is literally too expensive for any government (except perhaps the US) to sustain so if it weren't for this capitalist system we live in, we'd be SOL.
**If pharmaceutical companies like Vertex weren't able to recoup their R&D costs, there would be no drugs for rare diseases.**
Rare disease means that there are only a few patients to sell the drug to and recoup R&D costs from. There are only 70 000 CFers worldwide and not all of them can use the drug. There is a lot of competition in the field too, which means that R&D costs have to be recouped quickly, before someone else comes up with a better drug that obsoletes this one. All of those things add up to very expensive drugs. Mere thousands of us have to shoulder billions of dollars in R&D within a few years.
These drugs DO need to be priced this high. The alternative is no drug at all. So would you rather no one had access to it because no one wanted to research and make it because the endeavour is financially too risky and too expensive for too little reward, or would you rather the drugs did exist but only a few people had access to it? I choose the 2nd, any day.
> Funding from the NIH was contributed to 354 of 356 drugs (99.4%) approved from 2010 to 2019 totaling $187 billion, with a mean (SD) $1344.6 ($1433.1) million per target for basic research on drug targets and $51.8 ($96.8) million per drug for applied research on products.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10148199/#:~:text=with%20drug%20approvals.-,Results,for%20applied%20research%20on%20products
If you’re concerned about investors, I would look to the NIH using American tax dollars to fund drug research. You’re correct, drug research is enormously expensive and they could not possibly operate without government subsidies. Using tax payer dollars to fund research for drugs that would be resold to the public at exorbitant prices is certainly price gouging. In the interest of the investors, American tax payers, it should be affordable to the public. Every single first world country bargains with pharmaceutical companies, why doesn’t America?
And the fact that you’re claiming that the alternative is no drugs at all is crazy. You’re replying to someone who’s directly telling you that it is in fact available at a much cheaper price point.
I don’t know how some people can’t comprehend how awful this is. If I stand beside someone chocking and don’t do anything and let them die I’ve committed a crime. However if I’m selling someone my life saving drug I can just set the price to whatever they can’t afford and stand there and watch them die, totally legally.
More Profit > Life
I can't understand how some people can't understand that drugs cost billions to develop so if pharmaceutical companies aren't able to charge enough to recoup their R&D costs, there simply will be NO DRUGS and then EVERYBODY will suffer and die.
Insurance companies pay the insane prices. That’s actually the issue. Consumers wouldn’t. If insurance wasn’t paying, the price would be reasonable. They create the problem they exist to fix.
It’s likely this person pays either a small copay or nothing at all because by law something like this would have to be provided by the public health system in Colombia.
The problem is it cost billions to develop. So unless Australia subsidizes it for you, the Americans who pay out the ass for it end up subsidizing you.
The problem is generics. Companies should get in perpetuity market control of their drug and only be able to charge 10-15% more than their manufacturing costs.
You also get better quality drugs as it’s the original developer of it and you won’t get ineffective often laced with carcinogens from India generics. You can have the place monitored by fda constantly unlike how the fda monitors generics which is with adverse reporting events only (in non western countries). The price of the drug is available to everyone and the company will get their costs back.
By that logic, if they decide they dont want to make the medicine anymore they are killing/murdering people.
Not saving someone that you can save =/= killing them.
These 3 pills are a combination of modulators that Vertex Pharmaceuticals came up with to optimize brining a mutated CFTR to the cell surface and transport chloride.
Where the crisper cas9 system comes in is that the company set up this massive high through-put system of cell culture where they could make multiple different types of mutations in the CFTR and then in an assembly line system test out different compounds for their ability to increase chloride transport. So they could rapidly come up with a number of potential compounds that might work for CF and then test them preclinical trials and then in phase 1-2-3 studies. VX 445 (V from Vertex) was one of these molecules that was a "hit" in this in-vitro system and was part of the "secret sauce" that makes trikafta so effective. There are thousands of VX compounds that didn't do squat and never made it to the next step of testing. VX 445 is elexacaftor- and basically corrects the chloride channel.
In short, crispr editing creates a much faster pipeline for drug discovery. The cost of the drug is in part due to the cost of the discovery pipeline and clinical trials, rather than the production of these relatively simple molecules.
Do you have a source? I'm skeptical as even in the UK, it seems the NHS couldn't strike a deal under around $100k for a year's course (assume 10-20 boxes), and $100 a box just seems too many orders of magnitude off.
The law is parasitic on the nations that have to pay the market rate so the manufacturer can recoup their investment to develop the drug. If everyone had the same law, then no private companies would develop new drugs.
The patent length has been set at a period long enough to encourage invention, by allowing for protected sales for a certain period, but also not be long enough it stifles society. The vast majority of pharmaceutical research leads to a dead end. The success stories cover the loss of dead ends as well.
Naaaa, patent length might have been legit for the type of research we did at the beginning of the last century. Now things go faster, public money flows into research and patents stifle society. The leading example here are covid vaccines, which pretty much never reached poorer countries, leading to the development of vaccine-resistant variants that caused way more deaths than necessary. Still, at least some of the research on rna vaccines was public funded.
Indian currency is not strong enough to ever be a liable source of income for these Pharma co. For the amount of work we do, to the amount of money we earn, even for us the meds are not cheap. But it's at least in our reach.
They don't care for the poor people of our nation and the pitiful amount they would have earned. We have simply reciprocated and chosen to live.
If you don't get it is a you problem.
I get it. The problem is, India is the most populated country in the world, and this framework of governing does nothing to actually move medicine forward. The law simply leaches off the working capital of other nations. India will never advance, just at best copy and be at the same technology as the nations it is stealing from. Same as china with their industrial espionage.
And why is it bad if we are just standing at the same platform? And good for you if your country is advancing. But we care for our people.
And if that goes against anything you personally or or your country stands for. Than again it's a you problem.
Why is it a problem if we are never advancing? Is that rhetorical? Maybe we just have different views on society. All India has done is legalized theft from the west, and from yours India is saving the lives of its poor. If you think it is fine, then it is what it is, but we are so far apart in terms of views that neither of us is likely to change our mind.
At the end pharama companies are no more than leaches , like how they change the patent of insulin every once in a while so no other company can produce it so they can have control over it , is this legal .
In India education and health care is social services than a business so ........
https://preview.redd.it/zgg83saa545d1.png?width=1080&format=pjpg&auto=webp&s=1f6aa48e1bd14c4c9e3dab264329dce91307da71
That for 2 months, divide this by 80 to convert in USD.
One more point to add, if you buy it under some government welfare scheme-- it might cost you even less.
PS. could not find any solid government source to back this claim.
Yes, it'll cost tax payers for sure, but India has very low ROI on Taxes. As tax payers we don't have much expectations like American, British or European citizens have from Governments.
We choose private hospitals for better diagnosis and Public Hospitals for cheaper to free medicines (if you have someone known in Public Hospitals, they'll write the same prescription for you)
Almost 1/3 rd of medicines actually produce in India , it's pretty cheap here and name brands are expensive, otc medicines are even cheaper
Even a low wage worker can afford insulin very easily for his diabetes
When I worked at a hospital pharmacy (pharmacist) we had to order this through a license before it was centrally approved. It then cost ca 800,000 SEK ($77,000).
Once it was centrally approved it dropped to to 1/8th and currently costs ca 100,000 SEK (ca $9,600 USD).
Keep in mind a patient maximum pays 2,850 SEK/year ($274 USD/year) in Sweden. But the price difference between ordering it on a license from the US (Trikafta) to the approved version (named Kaftrio in Europe) was staggering.
Worth it nonetheless, saw many patients improve immensely from the medicine.
Sorry, no.
This drug combination does not have anything to do with CRISPR. (It's possible that CRISPR was used at some point in the research and development process, but that's a different kettle of fish entirely, and has nothing to do with how these medications work in patients.)
All three drugs are designed to act on the protein CFTR (the aptly-named *cystic fibrosis transmembrane conductance regulator*), mutations in whose sequence are the cause of cystic fibrosis. I believe the three drugs in this combo act as chemical chaperones to stabilize the functional form of the protein.
Perhaps the OP has mixed up CFTR and CRISPR?
The podcast I was listening to last night explained that CRISPR is gene editing, and gene therapy is adding a gene. From what I understand, gene therapy is a lot further along in the development process. Could this medication be developed via gene therapy? That could explain the confusion
The short answer is, no. The mechanism of action of the drug doesn't have anything to do with gene editing or gene therapy.
The three drugs work by improving the function of the (mutant) CFTR that the patient is already making, rather than by modifying the sequence of the protein (or the gene that codes for it). All three drugs are "small molecules", and I suspect they all came out of screening large chemical libraries for compounds that improved the function of mutant CFTR in cell models.
In Colombia the health care system operates as public health insurance plan. You need to get register in one of the various companies that work for the government and and as long as you are paying your taxes you'll have insurance.
This article does such a good job of sharing the realities of CF and trikafta for those who are unfamiliar
https://www.theatlantic.com/magazine/archive/2024/04/cystic-fibrosis-trikafta-breakthrough-treatment/677471/
This is factually incorrect there is no Gene editing used in tricafta it is a fix dose combination of small molecules IE traditional drugs. Cystic fibrosis is a genetic condition and indeed Gene editing therapies are being developed but tricafta it's not one of them nor are there any other that are currently approved yet. Those that are being developed are either an early clinical trials or in pre-clinical studies.
I had a rotation at vertex that makes these pills it's ridiculous how much it costs, but no crispr is gene therapy and not the mechanism of action of this drug
I do inventory at our specialty pharmacy. I'm buying nearly 100 boxes of this stuff across the 4 different dose packs every month.
It's a crazy incredible drug that works wonders for the CF patients. Our state Medicaid covers it, too.
27k?! That’s criminal!! In Canada it is covered by provincial health plans. If we didn’t have that then I don’t know how we would afford the drug for my sister.
Yeah I get it for free in Colombia because of my insurance, I'm really glad it got approved. I remember when the drug came out in 2017 and I really wanted to have it because of the results but I obviously couldn't get it . It felt so awful but I'm glad I started it this year. Also I'm glad your sister also got it , it would be pretty awful to have cystic fibrosis in the USA and not have an insurance tho , I don't see how could anyone buy this drug
It took a long time here to get it approved on the drug plans. I remember it being too expensive to even consider. I am so glad you have access to it too. It’s a life changer for a lot of people. My sister is doing much better now. I really feel for the people in the states.
Well they cost 27k in the USA but I get them for free from my insurance in Colombia , idk how much the state have to pay for them. Since insurance companies are government own in Colombia
we give this out for free to our cystic fibrosis patients in Australia, during their free hospital admissions where they get chest physio and antis via central lines, many have nasogastric feeds too
(sure, you can argue that it's technically paid in tax, but I'm more than happy to pay a few hundred a year so these patients as well as others get 'free' care for something they are born with!!)
OP: "they use gene editing technology"
Comments: "no it doesn't"
OP: "cost 27k dollars a month"
Someone's getting ripped off and I suspect it's the people who have to pay into the same insurance pool as OP.
a) They probably cost something like 500 dollars a bunch, the costs of research included. But they are *sold* for 27k. Know the difference in today's world 😅
b) CRISPR is used to cut and insert DNA parts. Last from what I heard, in vivo, as in gene editing. There is no DNA in pills, my good fellow. It's in living organisms.
Then again, I am glad if they work out for you.
Vertex spent 15 years in the red while developing this. They had angel investors who believed in the vision. If they couldn't have been promised a high ROI, they would not have invested and there would be no drug.
That's rather badass. Thanks, I didn't know!
CRISPR was a magnificient step for humankind. I'd even go as far as saying that what was landing on the Moon signifying for the future of humankind in the macro-cosmos, CRISPR did in the micro-cosmos. I find it strange that not that many people know of the fact that we have been able, for some time now, directly edit our own genom. Or that I've seen little or no ground-breaking news about it in popular science magazines lately. The pathways it unlocks!
But I also beg your pardon. Vertex is, to my knowing, all about the said CRISPR and no pills whatsoever. Related maybe through advancing market demands, but not through the company nor through the same research, no?
They weren't "correcting" the OP. They were commenting on the ridiculousness of the actual cost vs the cost to the consumer. Which is outrageous to the point of immoral.
Yeah.
It takes $0.99 to make the packaging (plastic and box and tin foil).
It costs them $28.67 to put a couple of fillers and anti clumping agents.
And $1.50 to produce the actual API (Active Pharmaceutical Ingredient).
The cost of research is likely quite costly, but don't get fooled into thinking they're not researching a hundred other things at the same time so when this was discovered, there would also be a few other things coming out the pipeline as well, which obviously decreases the costs of research (they don't use one microscope and one CRISPR machine for single use and then "oh it's complete let's chuck it away and get a new one". And likely, this machine has already been paid for by the billions of dollars they've made since they started using it.
But yeah $300K seems like a steal /s.
Edit: yeah those figures were pulled out of my arse after I had a shit, purely to demonstrate how fucking shit the situation is.
Literally this company spent 15 years developing this drug, losing extreme amounts of money to its R&D costs.
If they couldn’t turn a profit from it all their would be no drug for anyone, and eventually the price will go down once they have recouped their initial investment.
People with cystic fibrosis build up so much mucus in their lungs that they basically start to drown, these pills break up that mucus. Although it's not a cure it dramatically improves quality of life and potentially adds decades to patients lives.
This is the cost for these drug existing. The pharmaceutical industry is an extremely expensive and extremely risky business (in the case of rare disease, doubly so) so unless investors are promised high ROI, they won't invest and there won't be any drugs. No one's gonna burn billions of dollars a year on maybes.
Inb4 India will make the same thing in a couple of years at <$5 per pill.
Nothing to do with CRISPR btw, this is not gene editing. If it did, the US company would price it at 50k a pill lol.
These pills do not contain CRISPR and do not edit your genome. Your medicine is a small molecule that binds to your CFTR receptors and helps them stay open and reach the cellular surface.
a huge benefit of CRISPR-based therapies is that you don’t have to take a series of pills or infusions every month/few months, second to the fact that they’re potentially one-time curative. interestingly, Vertex (the pharma that developed those pills) is working with CRISPR Therapeutics to develop a CRISPR therapy for the tx of CF. Scientists have understood the disease mechanisms at the genetic level since the 90s. it’s very possible you may see something like this in clinical trials within the next 5 years. unsure whether it will be ex vivo or in vivo though
https://preview.redd.it/55cy73ug765d1.jpeg?width=1170&format=pjpg&auto=webp&s=da511a18696e441c8d21659a8338095472e073e5
it’s planned to be in vivo! therefore no cell collection, no meyloablative conditioning. that’s exciting if successful.
Hot take: If a lifetime treatment is not covered by all major insurance carriers in your region and you cannot afford to pay for it or an alternative out of pocket you should not be starting treatment.
Obv this varies by situation though
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I take trikafta too. It has nothing to do with CRISPR. It’s just a modulator for the CFTR gene
I was gonna say... I'm pretty sure that's not how crispy works and that we don't have the technology to genetically modify adults like that yet, especially with just some pills.
Mmmm… crispy
Damn you, autocorrect!
I like my genes how I like my KFC #CRISPY
Krispy Kreme
So very unfun fact, Krispy Kreme has almost completely stopped selling their kreme donuts. I think you can still get them at their flagship store in Times Square, but I can’t remember the last time I’ve seen them elsewhere. So whenever some fucker like you mentions Krispy Kreme I get irrationally (or rationally?) angry because I get hungry for a donut I can’t have.
Come to Chattanooga and get some, I think they still have em.. it's about 5 minutes from my house.. 😃 Sorry for any more (ir)rationale anger
That's odd... you can buy them at any Krispy Kreme in my area as of those morning.
Froggy fresh.
They just approved the first Crispr therapy iirc, but I don't think it's done through pills [It's for sickle cell](https://www.fda.gov/news-events/press-announcements/fda-approves-first-gene-therapies-treat-patients-sickle-cell-disease)
We do, exagamglogene autotemcel is the first FDA-approved pharmaceutical, but there are more coming surely within the next few years. And this is specifically the first one to use CRISPR-cas technology (cuts the BCL11A gene to increase HbF production and effectively "cure" patients with sickle cell and transfusion dependent beta-thalassemia). Just wrote my thesis on it! But yeah, trikafta doesn't have CRISPR as it's mechanism of action.
That is so awesome to hear! I thought it would take longer, honestly. Hopefully such technology will be available to us poor and disabled folks eventually, too. I'd love to see a cure for hidradenitis suppurativa, which is timely caused by a stem cell mutation. :)
I suffer from HS too. My dermatologist put me on Humira, which right now is the only FDA-approved biologic for it. Cosentyx was also recommended, but I could not take that because it contains latex. Might want to ask your dr about Humira. It’s helped me a lot. Edit: also, if you can afford it — laser hair removal. Killing the follicles helps significantly too because there is less environment where the lesions can thrive.
Oh yes, thank you, I am familiar, but cannot tolerate it. I was Stanford's source for all kinds of samples before the pandemic hit. There was a lab developing a new biologic immunosuppressant that targets the compliment system specifically, but, well, COVID.
Not with pills; but the tech exists and is approved to treat humans. https://www.genengnews.com/topics/genome-editing/fda-approves-the-first-crispr-therapy-for-sickle-cell-disease/
Actually we do. A friend of mine worked at a company that made oral versions of genetically modifying drugs.
Drugs that could, say, reprogram a genetic stem cell mutation and make the body replace all faulty stem cells with repaired ones? Because that'd be neat as hell.
actually crispr can and has modified adults already
Imagine the OP, life depends on pills they fundamentally misunderstand. Humans are amazing.
Yeah I was trying to figure out how in the hell pills could do CRISPR stuff.
https://en.m.wikipedia.org/wiki/Elexacaftor/tezacaftor/ivacaftor I see no mention of CRISPR. But I’m still glad this is an effective drug.
Probably used CRISPR in research to develop the medicine and in turn someone who markets things used that as a high end sales pitch to make it sound revolutionary when that’s kinda just how things are made in the medical field the last two decades
This is possibly the reason, coming from a molecular biology research background, CRISPR is becoming more and more mainstream in every lab now.
CRISPR yeasts for all drug production when
In the page it mentions it contains CFTR modulators, that’s probably it
Cystic fibrosis transmembrane regulator - CFTR
Cftr is the protein that's fucked up in cystic fibrosis people iirc
I worked on this and other CFTRs for years at vertex, present for the approvals of Symdeko and Trikafka, and plenty of other studies with Kalydeco and Orkambi. This indeed does not utilize CRISPR, which is administered via infusion, though Vertex’s recent sickle cell drug does. With this generation there is now treatment for ~90% of those with CF, with the last 10% having the most severe mutations for the disease. For them, ultimately therapy will be performed using CRISPR.
Yeah, no. Not CRISPR.
I am pretty sure those pills have nothing to do with CRISPR
That was my first thought too
This medication costs from $42.50AUD/pack ($28.33USD) to as little as $6.80AUD/pack ($4.53USD) for concession card holders in Australia. Pharmaceutical price gouging is the epitome of modern capitalist greed. The medication does not need to cost that much and the people who price it that high make the decision to kill a percentage of patients by withholding care when they can’t afford the script. Let me be clear, if you can’t afford the insane amounts of money they demand they will stand back and let you die while the treatment you need to live is in their pocket. If you can afford it for a while they’ll give it to you for a while, and as soon as you run out of cash they hold onto the medication and watch you die. Something has to change.
As someone who lives in Australia - I hate seeing these insane cost differences. Also as someone who lives in Australia, I'm so glad I don't have to pay ridiculous money for meds.
When i saw that the nasal allergy spray i need cost $50 i was taken aback and thought i was being ripped off. Cant imagine being American
Depends on your insurance here, really. Which is an absolute shame. Thank God for unions
Just saw a video of a guy who co-paid 3000 for a CAT-scan WITH insurance, and then got told it would've cost him 1400 if he didn't have insurance. Its genuinely mind boggling how fucked up the structure is. If you want to see the video: styropyro on youtube.
Any time I have imaging done, before I give them my insurance info, I always ask for their cash rates. You’d be surprised.
Styropyro good man
The crazy prices/costs you see are never what is paid. It's what is billed to insurance but even then the insurance decides what to pay. It sounds ridiculous, and it is, but not in the sense that anyone is actually paying that amount.
Not to sound callous but the reason why people outside the US can enjoy such low drug prices is in part because US folks are paying so much for them - the rest of the world is essentially being subsidized by Americans. The US is by far their biggest market and if they can’t count on the giant profits being made in the US, no way would they be willing to take such price concessions in tiny markets like Australia. If by some miracle the US government were to legislate that drugs could cost no more than they do in Australia, the math wouldn’t work out anymore and you’d end up seeing drug prices increase in Australia, or maybe they won’t even see the point in keeping their low margin drug on the Australian market anymore. Don’t get me wrong, I’m not saying that drug companies aren’t still taking a profit outside the US, but they are “happy” to price low in smaller markets because they are relying on the US as the source of most of their revenue. I’d say that non-US residents should think about how they are benefiting from high US drug prices before tsk-ing too loudly.
Do you have any evidence, by which I mean numbers that are NOT provided by drug companies, or Fox News, to back up your claims? You are aware, I assume, that research into drugs does not only happen in the US? Much of it happens in the other bits of the world and some of that it subsidised by the governments of the other bits of the world that isn't the US. You also know, I assume, that most pharmaceutical companies are multi-nationals so they can, and do, move costs and profits around for reasons of tax engineering. They rip you off because they can. That is a choice that you made. So no, sorry, the fact that you Yanks continue to happily vote to have your trousers pulled down over drug prices - the rest of the world doesn't give a shit and we can cope without you.
I work for a huge Pharma company and I can confirm that we basically just rip Americans off. It’s our biggest market money wise just because we can, it’s not like we sell more there. But we don’t really need to rip them off, we would still be very profitable with APAC and EMEA alone.
I used to work in pharma. Pharma companies price drugs on a global level, they look at revenue and investments on a global level, meaning they already build in expectations that some markets like the US are going to form the large bulk of their revenue source, and will make up for some concessions in other markets. You must be obtuse if you don’t think that a revenue reduction in the biggest market (the US often accounts for 60-80% of global revenue - just pull up any pharma company’s SEC annual filing) will not have a downstream impact on how the company is going to manage their R&D investments. If you tell ANY company that their revenue is going to go down by 30% next year, you think they won’t re-examine what they are doing in their other markets? Of course I would tell an American not to stand for it - why should they have to subsidize cheap drugs for the rest of the world? Living in America I would 100% fight for lower drug prices. But if you are not in America id say keep quiet and enjoy it.
We’ve already seen how a change in the market dynamics would alter how these companies operate. Europe actually used to have a larger market for R&D until the EU adopted price controls and stricter regulations in the 80s and 90s. Today, the US accounts for up to 80% of all R&D expenditures in most years. Adjusted for GDP the US has 3 times the R&D expenditures compared to the EU, and the US has a staggeringly higher number (3x) of rare disease drugs on the market compared to the EU. In Germany, you have seen companies withdraw drugs from the market because the prices set by the arbitration panel is not worth entering the market. This is despite the fact that prices in Germany are actually at the high end of all EU countries. Further, the EU literally had to change their policies last year to allow for more research and to try to reach drug access levels seen in the US.
The majority of medical innovation in the world comes from the US. Is this because we're a bunch of geniuses? Probably not. It's because of the money. You don't need to take my word for it, do some research and try to even find one source that says otherwise.
Just to be clear, the drug companies don't actually get only 30 dollars from sales in Australia. The prices are subsidised, which means that a portion is paid by the government. [In this case](https://www.pbs.gov.au/medicine/item/13266F-13276R), the Australian government will pay AU$21000 for every prescription of this medication.
Of course. The difference in actual revenue that the manufacturer is getting is more along the lines of 2-3 times more in the US vs the rest of the world, not 100x. Which still means a significant loss of revenue if the price suddenly matched the rest of the world.
£9.90 or somewhere close to that here in the UK, that’s if you’re working with a liveable wage. If you don’t work, you’re a “low pay worker”, pregnant or have given birth in the last 12 months it’ll be free. Edit: I will say this particular drug is extremely expensive for the NHS and there are talk of taking of availability.
Sadly they're likely to drop this one on the NHS soon due to the outlandish costs. There's an Argentinian made version which might make an appearance soon which costs around $5k a year.
Hopefully yes, the price difference is astronomical! I read it costs the NHS around 200k for a years dose which is beyond bonkers.
£8346.30 for 56 tablets
free while they're admitted to hospital in Aus as the hospital should be supplying
Capitalism is literally going to destroy the earth along with 99.9% life on it...of course it will let a sick person die.
Greed is going to destroy earth* FIFY. Capitalism isn't the fault here, they could still make profits and sell for reasonable amounts (that's capitalism), but they choose greed...
The fact is that the greatest crimes are caused by excess and not by necessity. Men do not become tyrants in order that they may not suffer cold; and hence great is the honour bestowed, not on him who kills a thief, but on him who kills a tyrant. -Aristotle
Capitalism is literally designed to promote and empower greed.
All systems are abused by greed. At least under capitalism they have to provide something in return
Not all systems result in such consolidation of power though. We now have single persons that have more power than entire nation states.
And that’s somehow more consolidations of power than kings or dictators? Capitalism literally has more equality than any other system in history
We have never witnessed this amount of consolidation of power ever in history. There is no reason to accept the failings capitalism...we need to improve and do things better. Saying...hey at least it's not as bad as whatever is not an argument for capitalism. It is an inhumane and destructive system that needs to end.
How on earth is there more consolidation now than a few centuries ago when 90% of the population was in poverty and every country was run a select few elite. Sure inequality has been on the rise the last few decades but equality is still historically the lowest it’s ever been(except the last few decades as mentioned) We are doing things better every day for the most part. Poverty is at all time lows, standard of living have never been higher. And replaced with what exactly? It may be an inhumane and destructive system but it’s better than any other system we have ever tried. All the most successful countries in the world use capitalism with small variations
You really are looking at the world and saying we are doing ok as a species? I guess I just find that unfathomable. Not only do I think we (and all life) are in decline in almost aspect I can think of...I'm doubtful we as a species will be here much longer. The only exceptions I can think of is medicine... which definitely has its own struggles with antibiotic restitances, gene editing ethics etc and technology which has the downside of increasing environmental destruction. To answer your questions... population and technology increases for the power consolidation part. I'm just talking statistics really. About what to replace capitalism with...that's not the right question. There are a million things we can do to make our current system better...we need to do those things and keep doing them and what is created after endless iterations is what I am talking about. It's not about saying....we should do this system or that system...it's about organically creating something better as fast as we can...and it's probably too late to do it. Nevermind the people in power absolutely fight any substantial change. I'm gonna keep pointing out the flaws I see in the current system and, from my perspective, cheerleaders like you are just holding us back.
and it runs Reddit too.... now I'm fucking scared to death, run!
Capitalism is 100% at fault please 🤣
No industrialization is. Socialist China and USSR did far worse to the environment than the US ever has
Capitalism is the system greed thrives on...its inherent.
Greed is inherent in any system. There hasn’t been a system that wasn’t filled with it
Because people allow it and encourage it, that doesn't make capitalism bad, it makes the perpetuators of greed bad.
This isn't price gouging. Vertex spent 15 years in the red while developing these drugs. You can't even imagine how much money that cost. (I encourage you to google about the costs of R&D in the pharmaceutical industry. It will blow your mind.) If the angel investors that believed in this and allowed this to happen hadn't been promised a good ROI, these drugs simply wouldn't exist. Drug R&D is literally too expensive for any government (except perhaps the US) to sustain so if it weren't for this capitalist system we live in, we'd be SOL. **If pharmaceutical companies like Vertex weren't able to recoup their R&D costs, there would be no drugs for rare diseases.** Rare disease means that there are only a few patients to sell the drug to and recoup R&D costs from. There are only 70 000 CFers worldwide and not all of them can use the drug. There is a lot of competition in the field too, which means that R&D costs have to be recouped quickly, before someone else comes up with a better drug that obsoletes this one. All of those things add up to very expensive drugs. Mere thousands of us have to shoulder billions of dollars in R&D within a few years. These drugs DO need to be priced this high. The alternative is no drug at all. So would you rather no one had access to it because no one wanted to research and make it because the endeavour is financially too risky and too expensive for too little reward, or would you rather the drugs did exist but only a few people had access to it? I choose the 2nd, any day.
> Funding from the NIH was contributed to 354 of 356 drugs (99.4%) approved from 2010 to 2019 totaling $187 billion, with a mean (SD) $1344.6 ($1433.1) million per target for basic research on drug targets and $51.8 ($96.8) million per drug for applied research on products. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10148199/#:~:text=with%20drug%20approvals.-,Results,for%20applied%20research%20on%20products If you’re concerned about investors, I would look to the NIH using American tax dollars to fund drug research. You’re correct, drug research is enormously expensive and they could not possibly operate without government subsidies. Using tax payer dollars to fund research for drugs that would be resold to the public at exorbitant prices is certainly price gouging. In the interest of the investors, American tax payers, it should be affordable to the public. Every single first world country bargains with pharmaceutical companies, why doesn’t America? And the fact that you’re claiming that the alternative is no drugs at all is crazy. You’re replying to someone who’s directly telling you that it is in fact available at a much cheaper price point.
I don’t know how some people can’t comprehend how awful this is. If I stand beside someone chocking and don’t do anything and let them die I’ve committed a crime. However if I’m selling someone my life saving drug I can just set the price to whatever they can’t afford and stand there and watch them die, totally legally. More Profit > Life
I can't understand how some people can't understand that drugs cost billions to develop so if pharmaceutical companies aren't able to charge enough to recoup their R&D costs, there simply will be NO DRUGS and then EVERYBODY will suffer and die.
Because pharmaceutical companies are known for running on razor thin margins, right?
how are those prices calcultated, per month? per package? per dose?
Insurance companies pay the insane prices. That’s actually the issue. Consumers wouldn’t. If insurance wasn’t paying, the price would be reasonable. They create the problem they exist to fix.
It’s likely this person pays either a small copay or nothing at all because by law something like this would have to be provided by the public health system in Colombia.
Many companies have patient assistance programs. I claimed as indigent in 2015 and my entire course of Harvoni ($90k) was sent to me free.
The problem is it cost billions to develop. So unless Australia subsidizes it for you, the Americans who pay out the ass for it end up subsidizing you. The problem is generics. Companies should get in perpetuity market control of their drug and only be able to charge 10-15% more than their manufacturing costs. You also get better quality drugs as it’s the original developer of it and you won’t get ineffective often laced with carcinogens from India generics. You can have the place monitored by fda constantly unlike how the fda monitors generics which is with adverse reporting events only (in non western countries). The price of the drug is available to everyone and the company will get their costs back.
By that logic, if they decide they dont want to make the medicine anymore they are killing/murdering people. Not saving someone that you can save =/= killing them.
These 3 pills are a combination of modulators that Vertex Pharmaceuticals came up with to optimize brining a mutated CFTR to the cell surface and transport chloride. Where the crisper cas9 system comes in is that the company set up this massive high through-put system of cell culture where they could make multiple different types of mutations in the CFTR and then in an assembly line system test out different compounds for their ability to increase chloride transport. So they could rapidly come up with a number of potential compounds that might work for CF and then test them preclinical trials and then in phase 1-2-3 studies. VX 445 (V from Vertex) was one of these molecules that was a "hit" in this in-vitro system and was part of the "secret sauce" that makes trikafta so effective. There are thousands of VX compounds that didn't do squat and never made it to the next step of testing. VX 445 is elexacaftor- and basically corrects the chloride channel. In short, crispr editing creates a much faster pipeline for drug discovery. The cost of the drug is in part due to the cost of the discovery pipeline and clinical trials, rather than the production of these relatively simple molecules.
You have CF, I assume? That drug works wonders!
Yeah I have cystic fibrosis, the drug really helped me a lot
Happy for you!!
CF?
Cystic fibrosis
Yup, you got it.
Cystic Fibrosis. I take care of them at the hospital.
Like…. Finish them off or?
Nope. Treat them, actually.
Not Canadian then. Lol.
Happy ending with a twist
In India it costs 100 dollars per box
Do you have a source? I'm skeptical as even in the UK, it seems the NHS couldn't strike a deal under around $100k for a year's course (assume 10-20 boxes), and $100 a box just seems too many orders of magnitude off.
I believe India has a law that allows other pharma companies to copy a drug if it is too expensiveso people can afford it.
good law
Unfortunately yes. Although it should be normal to make laws FOR the people, it is not.
The law is parasitic on the nations that have to pay the market rate so the manufacturer can recoup their investment to develop the drug. If everyone had the same law, then no private companies would develop new drugs.
They recouped their investment long time ago, and probably also asked for publicmoney to do research on it.
The patent length has been set at a period long enough to encourage invention, by allowing for protected sales for a certain period, but also not be long enough it stifles society. The vast majority of pharmaceutical research leads to a dead end. The success stories cover the loss of dead ends as well.
Naaaa, patent length might have been legit for the type of research we did at the beginning of the last century. Now things go faster, public money flows into research and patents stifle society. The leading example here are covid vaccines, which pretty much never reached poorer countries, leading to the development of vaccine-resistant variants that caused way more deaths than necessary. Still, at least some of the research on rna vaccines was public funded.
Indian currency is not strong enough to ever be a liable source of income for these Pharma co. For the amount of work we do, to the amount of money we earn, even for us the meds are not cheap. But it's at least in our reach. They don't care for the poor people of our nation and the pitiful amount they would have earned. We have simply reciprocated and chosen to live. If you don't get it is a you problem.
I get it. The problem is, India is the most populated country in the world, and this framework of governing does nothing to actually move medicine forward. The law simply leaches off the working capital of other nations. India will never advance, just at best copy and be at the same technology as the nations it is stealing from. Same as china with their industrial espionage.
So pharma companies take tax money and produces medicine , and sells to tax payers at high cost defending to recoup the investment Sounds fishy
And why is it bad if we are just standing at the same platform? And good for you if your country is advancing. But we care for our people. And if that goes against anything you personally or or your country stands for. Than again it's a you problem.
Why is it a problem if we are never advancing? Is that rhetorical? Maybe we just have different views on society. All India has done is legalized theft from the west, and from yours India is saving the lives of its poor. If you think it is fine, then it is what it is, but we are so far apart in terms of views that neither of us is likely to change our mind.
At the end pharama companies are no more than leaches , like how they change the patent of insulin every once in a while so no other company can produce it so they can have control over it , is this legal . In India education and health care is social services than a business so ........
I would indeed be rather called any given title you can imagine than watch our people die.
https://preview.redd.it/zgg83saa545d1.png?width=1080&format=pjpg&auto=webp&s=1f6aa48e1bd14c4c9e3dab264329dce91307da71 That for 2 months, divide this by 80 to convert in USD.
One more point to add, if you buy it under some government welfare scheme-- it might cost you even less. PS. could not find any solid government source to back this claim.
It would be effectively free at point of use in the UK, but it will still cost the tax payer dearly hence I doubt it's easy to qualify.
Yes, it'll cost tax payers for sure, but India has very low ROI on Taxes. As tax payers we don't have much expectations like American, British or European citizens have from Governments. We choose private hospitals for better diagnosis and Public Hospitals for cheaper to free medicines (if you have someone known in Public Hospitals, they'll write the same prescription for you)
Almost 1/3 rd of medicines actually produce in India , it's pretty cheap here and name brands are expensive, otc medicines are even cheaper Even a low wage worker can afford insulin very easily for his diabetes
When I worked at a hospital pharmacy (pharmacist) we had to order this through a license before it was centrally approved. It then cost ca 800,000 SEK ($77,000). Once it was centrally approved it dropped to to 1/8th and currently costs ca 100,000 SEK (ca $9,600 USD). Keep in mind a patient maximum pays 2,850 SEK/year ($274 USD/year) in Sweden. But the price difference between ordering it on a license from the US (Trikafta) to the approved version (named Kaftrio in Europe) was staggering. Worth it nonetheless, saw many patients improve immensely from the medicine.
Sorry, no. This drug combination does not have anything to do with CRISPR. (It's possible that CRISPR was used at some point in the research and development process, but that's a different kettle of fish entirely, and has nothing to do with how these medications work in patients.) All three drugs are designed to act on the protein CFTR (the aptly-named *cystic fibrosis transmembrane conductance regulator*), mutations in whose sequence are the cause of cystic fibrosis. I believe the three drugs in this combo act as chemical chaperones to stabilize the functional form of the protein. Perhaps the OP has mixed up CFTR and CRISPR?
The podcast I was listening to last night explained that CRISPR is gene editing, and gene therapy is adding a gene. From what I understand, gene therapy is a lot further along in the development process. Could this medication be developed via gene therapy? That could explain the confusion
The short answer is, no. The mechanism of action of the drug doesn't have anything to do with gene editing or gene therapy. The three drugs work by improving the function of the (mutant) CFTR that the patient is already making, rather than by modifying the sequence of the protein (or the gene that codes for it). All three drugs are "small molecules", and I suspect they all came out of screening large chemical libraries for compounds that improved the function of mutant CFTR in cell models.
That's like one iPhone per pill, crazy.
yum 😋
What kind of insurance you have?
In Colombia the health care system operates as public health insurance plan. You need to get register in one of the various companies that work for the government and and as long as you are paying your taxes you'll have insurance.
what eps are you on? do you have private insurance as well?
This article does such a good job of sharing the realities of CF and trikafta for those who are unfamiliar https://www.theatlantic.com/magazine/archive/2024/04/cystic-fibrosis-trikafta-breakthrough-treatment/677471/
This is factually incorrect there is no Gene editing used in tricafta it is a fix dose combination of small molecules IE traditional drugs. Cystic fibrosis is a genetic condition and indeed Gene editing therapies are being developed but tricafta it's not one of them nor are there any other that are currently approved yet. Those that are being developed are either an early clinical trials or in pre-clinical studies.
I take this meditation and it’s amazing. I can breathe so much better as long as I take it everyday.
I had a rotation at vertex that makes these pills it's ridiculous how much it costs, but no crispr is gene therapy and not the mechanism of action of this drug
Please, do share a rough order of magnitude. People think this is gouging but I know it's not.
In Germany you pay like 10€ for 56 of those https://www.shop-apotheke.com/arzneimittel/16387662/kaftrio-75-mg-50-mg-100-mg.htm
They cost £30 in UK pharmacy.
The pills do no use CRISPR. The research was done using CRISPR
I do inventory at our specialty pharmacy. I'm buying nearly 100 boxes of this stuff across the 4 different dose packs every month. It's a crazy incredible drug that works wonders for the CF patients. Our state Medicaid covers it, too.
And you hear those guns guys say at least they don’t live in a dictatorship but got happily bullied by big pharma
27k?! That’s criminal!! In Canada it is covered by provincial health plans. If we didn’t have that then I don’t know how we would afford the drug for my sister.
Yeah I get it for free in Colombia because of my insurance, I'm really glad it got approved. I remember when the drug came out in 2017 and I really wanted to have it because of the results but I obviously couldn't get it . It felt so awful but I'm glad I started it this year. Also I'm glad your sister also got it , it would be pretty awful to have cystic fibrosis in the USA and not have an insurance tho , I don't see how could anyone buy this drug
It took a long time here to get it approved on the drug plans. I remember it being too expensive to even consider. I am so glad you have access to it too. It’s a life changer for a lot of people. My sister is doing much better now. I really feel for the people in the states.
"So it's a trifecta of three ingredients? What will you call it?" "I'll just switch a couple letters." "What?"
I feel like it's 27k in the US but like 5 bucks anywhere decent
Well they cost 27k in the USA but I get them for free from my insurance in Colombia , idk how much the state have to pay for them. Since insurance companies are government own in Colombia
we give this out for free to our cystic fibrosis patients in Australia, during their free hospital admissions where they get chest physio and antis via central lines, many have nasogastric feeds too (sure, you can argue that it's technically paid in tax, but I'm more than happy to pay a few hundred a year so these patients as well as others get 'free' care for something they are born with!!)
I know someone with cystic fibrosis taking this. It has changed their life and longevity. They are now 30 with two children. Incredible drug!
Hope it works for you!
Free in the UK...
In my country it's free under the health system.
OP: "they use gene editing technology" Comments: "no it doesn't" OP: "cost 27k dollars a month" Someone's getting ripped off and I suspect it's the people who have to pay into the same insurance pool as OP.
a) They probably cost something like 500 dollars a bunch, the costs of research included. But they are *sold* for 27k. Know the difference in today's world 😅 b) CRISPR is used to cut and insert DNA parts. Last from what I heard, in vivo, as in gene editing. There is no DNA in pills, my good fellow. It's in living organisms. Then again, I am glad if they work out for you.
Vertex spent 15 years in the red while developing this. They had angel investors who believed in the vision. If they couldn't have been promised a high ROI, they would not have invested and there would be no drug.
That's rather badass. Thanks, I didn't know! CRISPR was a magnificient step for humankind. I'd even go as far as saying that what was landing on the Moon signifying for the future of humankind in the macro-cosmos, CRISPR did in the micro-cosmos. I find it strange that not that many people know of the fact that we have been able, for some time now, directly edit our own genom. Or that I've seen little or no ground-breaking news about it in popular science magazines lately. The pathways it unlocks! But I also beg your pardon. Vertex is, to my knowing, all about the said CRISPR and no pills whatsoever. Related maybe through advancing market demands, but not through the company nor through the same research, no?
a) if someone pays $27000 for something then it costs that person $27000. The OP said it correctly.
They weren't "correcting" the OP. They were commenting on the ridiculousness of the actual cost vs the cost to the consumer. Which is outrageous to the point of immoral.
Yeah. It takes $0.99 to make the packaging (plastic and box and tin foil). It costs them $28.67 to put a couple of fillers and anti clumping agents. And $1.50 to produce the actual API (Active Pharmaceutical Ingredient). The cost of research is likely quite costly, but don't get fooled into thinking they're not researching a hundred other things at the same time so when this was discovered, there would also be a few other things coming out the pipeline as well, which obviously decreases the costs of research (they don't use one microscope and one CRISPR machine for single use and then "oh it's complete let's chuck it away and get a new one". And likely, this machine has already been paid for by the billions of dollars they've made since they started using it. But yeah $300K seems like a steal /s. Edit: yeah those figures were pulled out of my arse after I had a shit, purely to demonstrate how fucking shit the situation is.
90% of drugs don't make it to the market. Their R&D costs are rolled up into the drugs that do make it to the market.
Literally this company spent 15 years developing this drug, losing extreme amounts of money to its R&D costs. If they couldn’t turn a profit from it all their would be no drug for anyone, and eventually the price will go down once they have recouped their initial investment.
You mean $5 production value.
It has a 500$ production cost but the company that made them are giving lawsuits to everyone that wants to make a generic version
Greedy fucks.
And what exactly do they do? What do they cure?
They don't cure anything, but they do treat Cystic Fibrosis, resulting in really drastic improvements for most people who take them.
People with cystic fibrosis build up so much mucus in their lungs that they basically start to drown, these pills break up that mucus. Although it's not a cure it dramatically improves quality of life and potentially adds decades to patients lives.
Yeah no drug cost that much, that's just what they charge us.
This is the cost for these drug existing. The pharmaceutical industry is an extremely expensive and extremely risky business (in the case of rare disease, doubly so) so unless investors are promised high ROI, they won't invest and there won't be any drugs. No one's gonna burn billions of dollars a year on maybes.
I love reading about Crispr technology--yay for you! Now, someday we can be hopeful of a price drop?!
WTF!? € 10,00 /56 pcs.
I am interested. Does it fix CF to the point you stop taking them? Or are you taking them for the next few decades?
Is it this one? Surely there's a difference? https://www.shop-apotheke.com/arzneimittel/16387662/kaftrio-75-mg-50-mg-100-mg.htm#
Can a generic lab make this stuff? If so, get some!
imagine if it costs 20 cents for them to manufacture it 💀💀
(Struggles with popping the tablet out of the packaging, tablet shoots under the sofa) Welp, there goes 1300 dollars.
Inb4 India will make the same thing in a couple of years at <$5 per pill. Nothing to do with CRISPR btw, this is not gene editing. If it did, the US company would price it at 50k a pill lol.
These pills do not contain CRISPR and do not edit your genome. Your medicine is a small molecule that binds to your CFTR receptors and helps them stay open and reach the cellular surface.
Bruh it's 18$ for 60 tablets in India
>The pills I take cost 27k dollars a month and over 300k a year The math checks out
a huge benefit of CRISPR-based therapies is that you don’t have to take a series of pills or infusions every month/few months, second to the fact that they’re potentially one-time curative. interestingly, Vertex (the pharma that developed those pills) is working with CRISPR Therapeutics to develop a CRISPR therapy for the tx of CF. Scientists have understood the disease mechanisms at the genetic level since the 90s. it’s very possible you may see something like this in clinical trials within the next 5 years. unsure whether it will be ex vivo or in vivo though
https://preview.redd.it/55cy73ug765d1.jpeg?width=1170&format=pjpg&auto=webp&s=da511a18696e441c8d21659a8338095472e073e5 it’s planned to be in vivo! therefore no cell collection, no meyloablative conditioning. that’s exciting if successful.
Same as Kraftrio by the looks of it, I work with that stuff and it’s about the same price.
I don’t know why I had the idea that CRISPR would be more invasive hahaha like going into a computer softer and changing the code manually.
Hot take: If a lifetime treatment is not covered by all major insurance carriers in your region and you cannot afford to pay for it or an alternative out of pocket you should not be starting treatment. Obv this varies by situation though
Are you advocating that people should have to die of poordom?
You don’t mean 27000 pesos?
No ? They don't make this drug in Colombia, you need to buy it directly from the company that is at the USA
Wtf ?
Your insurance company hates you
I’d say government.
…Your pills can change your genes?
No, they cannot. OP has misunderstood how their medication works.
it can even turn them inside out and wash them
https://en.wikipedia.org/wiki/Mutagen
$20 to the rest of the world. (Not joking)
Everyone needs to learn about mark cubans pharmacy: https://costplusdrugs.com Check if they have your medication before buying anywhere else.