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Comment by tristanc | Hacker News Reader

Unfortunately seems unavailable in Europe...

Fortunately, most of us Europeans do not need to compare prices of prescription medication.

Comparing the prices of unavailable medicine?

Most of these aren’t available in Europe or European approval lagged the US (not that the US is as fast is it should be.) Europeans have had to fundraise to personally pay for such niche medications.

I can't see the list (from EU) but this is an example

https://www.theguardian.com/society/2021/jun/01/baby-boy-is-...

I am willing to bet that this is used to save more lives in the UK than the drug will in the US.

spinal muscular atrophy is the number 1 cause of child mortality in the UK, now any child with this disease can get the treatment. In the US people will still need to jump through hoops with their insurance company to get the treatment and there will be cases that go untreated because of the cost.

Zolgensma is one on the list that was approved earlier in the US than in Europe, requiring parents to fundraise during the gap period. Regarding absolute numbers, there are more SMA cases in the US than the UK. This is due to the overall population difference as well as a larger number of disproportionately affected populations which contributes to a higher rate of incidence. Zolgensma is authorized for treatment and payment using a similar review process and set of criteria in both countries. This is the case for both private/employer insurance coverage and pediatric public health programs. So I would take that bet.

Generally speaking, the US insurance system handles catastrophically expensive cases well. It’s the smallish cases (broken legs, etc) that are burdensome as copays leave families on the hook for several hundred to a few thousand dollars after insurance pays its contribution.

Though it still happens a few times for these expensive drugs.

https://smanewstoday.com/news-posts/2021/04/26/danish-family...

I just posted above - UK's National Health Service has just struck a deal with Novartis to provide Zolgensma to children who need it at no charge:

https://www.theguardian.com/society/2021/mar/08/nhs-use-worl...

Novartis will not charge for it?

The amount paid by the NHS to Novartis per treatment is confidential - there is no charge to the patient. Japan also provides the same drug free of charge through their public health service, but they have said they negotiated the price per dose to be $1.5M with Novartis.

They will, but it will be a lot less than $1.8m a dose. When you're buying on behalf of 68million people you get a lot of purchasing power in the negotiations. Now a doctor can just say "you need x treatment go and get it" instead of battling with an insurance company (who also won't pay list price (but it will be more than the NHS pays) however they will bill you as if it cost them 1.8million.

Though its a rarely used drug so you are talking about dozens of kids per year. Also Japan which is twice the size of UK was only able to negotiate it down to $1.5M.

It's only approved for kids under 2, and I somehow suspect UK will have more of those. UK estimates ~80 kids a year will receive the treatment.

I'm sure they negotiated a massive discount off the list price, but that is one of the values of the NHS, they can negotiate a price for a population of 68million people, the better the price the more likely it is to be used repeatedly too.

I guarantee you can’t get any of these drugs payed for by the government in countries with government-run healthcare.

Really? How certain of it are you? What's your source?

Very recently UK government has struck a deal with Novartis to provide "the world's most expensive drug" to children with spinal muscular atrophy - at £1.8M a dose(the amount NHS agreed to pay Novartis is confidential).

https://www.theguardian.com/society/2021/mar/08/nhs-use-worl...

My own father has been treated with Glivec for over 8 years, all on the national health service - treatment which in the US costs about $100k/year.

Like, I'm genuienly curious if you have a source, or is this just a flex of some kind?

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