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Comment by gnicholas | Hacker News Reader

From what I read of this, it's very expensive (thousands/mo), requires at least monthly injections at a facility, has a risk of anaphylaxis (so the injections can't be done at home), doesn't eliminate the risk of allergic reactions, and has no off-ramp (so you have to take it forever). Not exactly a silver bullet...

My first thought was that it could be good for kids, who are less good at checking for trace amounts of allergens, but then I saw that it requires injections, which kids aren't so great at.

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Longtime Xolair patient here: as far as cost goes, there are copay programs that knock the price down to $5/mo, but the catch is that you have to be insured (via commercial health insurance, not Medicare/Medicaid) to qualify.

A lot of drug manufacturers offer these programs: the bargain is essentially that they'll cover the brunt of your copay cost so long as your insurance company is still paying for the rest of it. Better to collect a few grand from the insurance company and reimburse the patient for a few hundred than to miss out on the sale entirely.

I'm surprised that the commercial insurance policies would tolerate this kind of copay kickback, since it arguably induces patients to be less discriminating based on their own financial skin in the game.

The federal government treats these as illegal kickbacks: https://oig.hhs.gov/documents/special-advisory-bulletins/878...

I’m on a similar expensive (per sticker price) medication. After insurance pays a few thousand, they leave me with a $6,000 bill. But I’m on the manufacturer’s discount plan so I actually only pay $5. However, my insurance still thinks I paid $6,000 out of pocket, which very quickly eats up my deductible for the year.

It feels wildly perverse. I’m incentivized to purchase this “expensive” medication once or twice and then the cost of all of my medical care the rest of the year is negligible.

So hard to believe that this is so complicated. People’s lives and health. I wish it was easier.

Move to Australia? On a script, cost is AUD $31.60 per syringe, a rather stark saving from $410 . I wonder how that latter price compares to the price in the US, I couldn't quite get the prices I read without insurance to compute in my head.

https://www.health.gov.au/ministers/the-hon-greg-hunt-mp/med...

https://m.pbs.gov.au/medicine/item/10109c-10110d-10118m-1012...

> I wonder how that latter price compares to the price in the US

My guess is not favourably for the US. My wife was diagnosed with MS about a year before we moved to America and, since I knew we were moving and was thinking about insurance, I asked the pharmacist once what they billed the govt per dose (monthly). We paid $40 out of pocket and the govt paid $1300 AUD.

Our insurance in the US pays nearly $10k USD/m for the same drug.

No wonder why I couldn't process it; this sounds like a complete rort - it's just mind boggling.

More importantly, wishing you and your wife resilience, strength and as much good luck in health as is possible for your journey ahead.

It still costs the government AUD $221.57 (minus $31.60). So it is still pretty expensive, it is just being paid for collectively.

Right. But the selling point isn’t “start packing pb&js for lunch”, but rather “go to a restaurant for the first time” or “worry less about your kid’s life being at risk from a classmate’s snack”.

We did achieve this with OIT for peanut allergy. Once we reached bite-safe levels, our lives literally changed for the better. We didn't have to worry about interrogating anyone serving us food (restaurants, friends, family), and we could go to some places that were just never an option before where cross contamination is likely or even expected, like ice-cream parlors. There's still a protocol we have to follow every day though, so an actual cure is still a dream for us.

That’s fantastic! I’m glad to hear that it’s been successful.

Xolair can be injected at home after the first dose.

Injections can be done at home, after you do some at the office and you get your doctor to agree. My wife gets it shipped to our door each month.

In her case, this doesn't cure anything, but manages symptoms of MCAS. Not ideal, but way better than life without it.

Far from a silver bullet, but still exciting as the first medicine of its kind! Accidental exposure happens to pretty much everyone with food allergies, so reducing the risk of anaphylaxis by ~70% is huge and will save lives.

It’s annoying to read “so and so new drug costs too much.”

Creating new drugs is absurdly expensive. Most new drugs target small population groups, which is why treatments do not already exist - the low hanging fruit with large market potential gets targeted first.

Just be happy a flag is planted in the ground. New drugs will be created from this that are different enough to avoid the patent, and new research will enhance it and reduce the side effects. This is just the beginning.

While true, there is more money going in executive compensation / stock than into research.

So there is plenty of space for lower prices. Plenty.

Citation needed?

Here's the 2023 report from Roche, which owns Genentech.

https://assets.roche.com/f/176343/x/0ef2047502/ar23-roche-ho...

Page 17 shows that R&D costs for pharma is 10-20x larger than equity-based compensation. That's all stock-based compensation, for execs and regular people. Your claim is that it's the opposite.

That’s absurd and you just made it up. Easily verified through public info.

Take Pfizer, R&D is $11B. You think executive comp is more than $11B?

The CEO total comp is $24M or 2%. The exec team is less than 10 people.

At least try to make believable claims.

He's probably referring to this article: https://news.ycombinator.com/item?id=39405547 that made the rounds a few weeks ago, and bungled the meaning ("executive compensation / stock" rather than "executives and stockholders than on R&D").

Correct. I see this from the perspective of the society overall. I do not care whether the money goes to the CEO, a mid-level executive, a sales rep or the stock divident/buyback etc. What matters is how much money from the dollar I spend on a drug goes to research and how much into cost of production. Every other cent is something which has to be under scrutiny like is any tax dollar. Healthcare is like water, food, and shelter an elementary human need. Excessive profiteering or waste on it is just wrong.

Don't be annoyed — my comment was not focused just on cost. The point is that it's very expensive and also not that good. I have food allergies in my family and have talked with other families that are ostensibly in the key demographic. We are not impressed. I wouldn't complain about a drug that was a silver bullet, but was quite expensive.

To be fair, Xolair isn't a new drug at all (it's been around for 20-ish years, I think?), this is just a new thing that it's approved for.

I'm not sure why a generic hasn't hit the market yet, though. Maybe there's not enough demand to make it lucrative enough, unlike the golden child adalimumab...

IIRC, MABs aren't really a thing, because unlike small molecules, part of the approval is for the whole biological pipeline to produce the antibodies, from cell line to chromatography to formulation. When a small molecule goes off patent, you just have to prove to the FDA you can make that molecule to sufficient purity.

That's not to say there are no generic MABs, it's that it is a far costlier process for the generic manufacturers to get up and running.

I have seen a lot of generics for TNF inhibitors MABs, but that might just be because there's soooo much demand for those drugs. (Humira was one of the most profitable drugs of all time, after all.) Right now I'm on an infliximab biosimilar!

I wasn’t aware of this, thanks for clarification. I will leave my comment as-is because it’s my take on the general “we need to ban price gouging on new drugs!” sentiment.

Ha, I certainly agree about the price gouging! I've stayed at jobs I hated just to keep my health insurance (and therefore my meds) :P

What's the Mexican name? Asking for a Mexican friend.

Generic name for Xolair is omalizumab.

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