I took blinatumomab in 2015 (in my late 20s). It literally saved my life. However, the risks of blinatumomab were seen as much riskier than chemotherapy. Most notably, blinatumomab has a significant risk of triggering a cytokine storm[0], a frequently-fatal immune reaction cascade. When starting a cycle of blinatumomab, the hospital required that I be inpatient for 7 days and they checked my vitals at least once every two hours. (This was _miserable_ for my sleep schedule, which is already a mess when in the hospital.) My regimen was 7 days in the hospital, then 21 days at home constantly connected to the pump, then 7 days of recovery time before starting another cycle.

At the time I took blinatumomab, I had already had unsuccessful treatments with two different chemo regimens. At the hospital system I was at, at least one failed chemo regimen was a pre-requisite for blinatumomab, as it was only indicated for "refractory" or "recurrent" cancers. I assume this is more related to the chance of acute death and (at the time) relative newness of blinatumomab compared to established chemotherapy regimens. (B-cell ALL is sadly very common in children, but this fortunately means that there is a LOT of funding research into the disease.)

After going through 3 one-month cycles of blinatumomab, it was becoming less effective, but I was able to line up a allogenic stem cell transplant which has (knock on a thousand woods) kept me clean for the 8 years since.

[0] https://en.wikipedia.org/wiki/Cytokine_storm

Amazing story. Thanks for sharing. For all of us who work in drug discovery the hope is to hear cases like yours become more common and hopefully one day we can push cancer out of the range of common causes of death. There is still a ton of work to do.

I read up on it. In the case of blinatumomab, it is called Cytokine release syndrome (CRS), it's very rare to have a high grade (dangerous, life threatening) CRS and seems to be survivable and treatable in the vast majority of those rare cases.

In this review, it seems like only 2% of 189 blinatumomab patients got a grade 3 CRS (requires hospitalisation) and 0% a grade 4 CRS (requires ventilation).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6142489

To me as a non impacted layman, the side effects of even one of the several chemotherapeutics one seems to get appear to be much more destructive, uncomfortable and scary than the well manageable CRS from blinatumomab that primarily appear in the first cycle.

Also looks like after blinatumomab, there are now also "Anti-CD19 CAR T cells" available which are even more effective (but have stronger side effects).

I hope I don't get cancer.

Literally, yes. On the NHS, they will exhaust cheaper solutions that have a fair probability of working before trying more expensive ones. Age, long term prognosis, whether they have dependents, and some other factors are also considered.

> dependants

You mean ones life is valued more if one has children?

There's an entire subfield dedicated to calculating life values for making difficult decisions. https://en.wikipedia.org/wiki/Value_of_life

I don't recall seeing having children as a variable in that valuation, it's typically more about how many years of work you continue to do, cast back into current dollars ("present value lifetime earnings", see https://escholarship.org/content/qt82d0550k/qt82d0550k.pdf?t...) and normalized for base rates.

If you have young children that depend on you, yes.

Do they look up records? Is this ethical? Does this also happen in the US or other countries?

It’s the UK, they have the medical history. They also ask the patient about their situation.

And I made it sound mechanical, but AI has not taken over all decisions like this yet. I believe it’s a discussion between a team of doctors where they are considering the humanity and ethics of the situation as well as the cost. Like, what would be the impact on the child/dependent if the parent was to die, do they have another parent or family members they can live with, can they fend for themselves, etc.

I mean, yeah. Of course it is.

No, I wouldn't say a life with dependents has more value. However, I do think it should be prioritized over those without dependents.

But that has nothing to do with inherent value.

But I'm not talking about inherent value, I'm talking about the calculations that go into health care. The life of a person raising children should absolutely be valued higher than that of one who isn't. And I want to be clear, I don't have children, and I don't plan to, so this isn't selfishly motivated, it's just common sense to me.

More children mean a bigger climate footprint. Also, some children will be net negative on the tax and societal side (violent criminals that will never be gainfully employed). So it's not black and white. And I at least pay more taxes than a family of 3, assuming all of them are, for example, "just" store clerks.

So, what I want to say is, assuming we follow this value of life calculation, I am more valuable than this whole family of three.

Ok, but the children already exist. Do you think if their parents are allowed to die they will become less of a tax burden?

This isn't an argument about whether or not we should incentivize couples to have children (we absolutely should, in my opinion), but whether parents of young children should be prioritized for life saving treatment. Maybe I'm crazy, but I think the additional value of not leaving children parentless is worth including in the calculation.

Nope, people aren't equal. More children in Africa is a bigger climate footprint as they are unlikely to develop next stage energy technologies which will transform how civilization functions, in fact if high iq people do not breed, the low iq will take over.

So really your take is self defeating, but much of the progressive lefts antinatalism is which calls into question their entire agenda.

I take offense being called part of the progressive left. I just really hate children and would personally rip the blinatumomab backpack out of the hands of one if I needed it.

That poison chemo was and is a vast improvement on puberty-killing radiation, for instance. It’s a spectrum

It'll be substantially cheaper in the UK.

For those who need it will be free - but not to the health service, who do have to pay the sticker price.

I understand your cynicism, but let’s inject some actual data.

The price that the manufacturer charges for a course of blinatumomab (in a different indication for adults, not that this is especially relevant in this discussion) is ~£56k [0] - so significantly lower than the price quoted from the US.

NICE (the organisation which published the document referenced) exists to achieve value for money for the NHS for higher-priced and specialist treatments. If, following a thorough assessment, a medicine does not achieve the required value for money standard at the price proposed by the manufacturer, they are presented with two options: to not have the drug reimbursed in the UK at all, or to lower the effective price, so that the drug becomes cost-effective.

[0] https://www.nice.org.uk/guidance/ta589/documents/final-appra...

> If, following a thorough assessment, a medicine does not achieve the required value for money standard at the price proposed by the manufacturer, they are presented with two options: to not have the drug reimbursed in the UK at all, or to lower the effective price, so that the drug becomes cost-effective.

Which is effectively price controls, because the number of people with the money to pay out of pocket will be low, so the choice is essentially to sell at the regulated price or not at all. And the company would be crazy to choose the latter because the high cost is to pay for R&D, not manufacturing, so they'll never be better off to abandon the market than to take whatever they're offered.

Then you have prices being set by the political system. If the regulators get captured by pharma companies (as would be likely if implemented in the US) they'd overpay when the drug isn't worth it. If not, the regulators would have all the leverage and very little reason not to set prices too low, reducing the incentive for R&D and causing more people to die.

They have a disincentive to sell to other countries at a discount if those countries allow medical tourism from the US. They don't want US patients taking advantage of the lower cost there.

And then many countries don't allow that, for exactly that reason.

I'd assume this kind of pricing negotiations between government entities and state of the art pharmaceutical companies is a deadly dance around how much money needs to be paid to the companies to incentivise research, lobbying and how much money a life is worth.

Yes, selling for cheap is better than not selling at all, but if the government entities keep being stingy, maybe next time the company won't develop a treatment for a rare disease at all because it's just not worth it...

> Yes, selling for cheap is better than not selling at all, but if the government entities keep being stingy, maybe next time the company won't develop a treatment for a rare disease at all because it's just not worth it...

Which is exactly the problem. And it's even worse than that, because it's a global market with national monopsony buyers. If your country is 4% of the global market, whatever you do isn't going to change the math for the drug company very much and you can ride on the coattails of other countries, so you might as well be as stingy as possible. But then everyone has the same incentive and the net effect is tragedy of the commons.

Or in practice, the US disproportionately funding drug development for the whole world and then people from other countries criticizing them for having higher drug prices.

That's not the real price in the UK because manufacturers will negotiate a confidential price with NICE.

And the quoted price is not the price insurers pay in the US either.

As someone who has worked in this space, the EU is lower than the US, but for oncology drugs the difference isn't that large.

NHS is approximately a monopsony, which probably has some advantages for price negotiation.

A family member has had immunotherapy on the NHS and it was disclosed to them (not sure how reliable or accurate this is) that a single dose cost the NHS 4 figures. It needed several layers of approval for it to be administered.

For one of the same drugs discussed above by Traubenfuchs? If so, unless I've misread the discussion, that looks like 12-140 times cheaper depending on which drug and exactly where in the 1000-9999 GPB it was?

Prices in earlier comment are per year, prices the NHS paid were per dose. Do we know how many doses per year?

Indeed it was per dose, and IIRC the figure was over £5000. It wasn’t intended to be public knowledge, I don’t think the patient was supposed to be shown it. The various supporting chemos ranged from below £100 to about £250/dose IIRC.

I mention it because in the UK people don’t really understand that drugs can be really expensive. The assumption is that due to the scale of the NHS they’re heavily discounted or even free, and that the high prices mentioned by US folk is due to the unusual healthcare situation there.

But there’s real money being paid by taxes, as well as procedures that determine whether you’re worth the expenditure.

I'm sure some (many) make that kind of mistake, so it is worth pointing out.

But also:

> and that the high prices mentioned by US folk is due to the unusual healthcare situation there.

Are they wrong? I keep hearing that the US government spends more per person on healthcare than the UK government, even though the US also has mostly private insurance on top of that and the UK mostly doesn't?

Not wrong at all.

The NHS probably does barter discounts. But consider that a discount of 50% off $150k/yr would be incredible, yet still be a vast amount of money for a single treatment.

>It wasn’t intended to be public knowledge

The price the NHS pays for drugs is published in the BNF.

Thanks! That means I did misread.

Sticker price varies by country, and national health systems can negotiate those prices with quite a bit of market power.

https://www.pgpf.org/blog/2022/11/how-much-does-the-united-s...

> According to a 2021 study by the RAND Corporation, a non-profit global policy think tank, prices of prescription drugs in the U.S. are 2.4 times higher than the average prices of nine other nations (Austria, Australia, Belgium, Canada, Germany, Japan, Sweden, Switzerland and the United Kingdom). That higher cost is largely related to brand-name drugs, which are 4.9 times more expensive in the U.S. than in those countries. In fact, brand-name drugs are responsible for 84 percent of total drug costs in the United States despite accounting for only 8 percent of drugs dispensed.

The US is just starting to negotiate pricing, beginning with ten specific drugs. Until 2022, it was illegal for Medicare to do so.

https://www.hhs.gov/about/news/2023/10/03/biden-harris-admin...

dumb question... is it purely the demand that makes it this expensive? The "you need this or you die" aspect? Or is the cost of research and manufacturing for this stuff so astronomical that it warrants such a high price?

I almost don't want to even know... if I find out it costs only ~$5 to develop a dose, and they're charging $200k to dying people... ugh

There is zero chance it costs $5 per dose because blinatumomab is a bi-specific T cell engager which is a monoclonal antibody made by extracting it from a cloned white blood cell created from recombinant DNA. The yield for this process is extremely low and it's really complicated in the best of times. The cost of the pipette tips and other consumables used by the lab automation alone probably costs more.

The flip side is that it treats a rare form of leukemia so the market isn't very big and since they can't lower the price enough to compete with chemo, they have to actually charge more to get their money back. For example chemo might cost $10k, but their drug costs $10k to make per person so if they charged $50k they might not even get enough customers to break even. So instead they charge $200k to get the most from the patients they can capture like the X% of patients who are allergic to the chemo drugs and have no choice (Just an example, I don't know the specifics for blinatumomab)

The research, development, approval process, and production all absolutely cost money that needs to be recouped from the sale, but we shouldn’t ever forget the reason why the company exists: to make profit.

You also need to pay for all the other research projects that did NOT yield a successful drug.

In other words, no it is not only supply and demand - it’s the desire to maximize profit as far as the market will bear

Or like the other response to your parent comment said, it could cost a ton to make, which lowers the number of people who can get it, driving costs even higher due to low volume.

It’s both. But it’s ultimately the profit motive that drives a business at all.