> one rare disease drug came out with a price tag of $150,000 a year — a lot of money.
If there are just 100 patients out there that's not a lot of money for the company in the end. Cancer drugs are way more common and yet remain expensive, too.
For orphaned drugs, companies have a monopoly status on it and clients litteraly can’t forgo buying, and will do whatever research is needed to find the product. There is no nudging or bribing the doctor or whatever is needed to take an edge.
Considering it’s long argued that one of the main cost of a drug is marketing [0], for any drug where it’s significantly more than 100 people we shoudn’t get these crazy prices.
You are missing a major point. Lots of people who have rare disease are not even aware they have them, or not even diagnosed because their local doctor has never seen it before and mistook it for something else.
So yes, you still need "marketing" to spread awareness for rare diseases, because they are, well, rare.
Cystic fibrosis is a "rare disease". A quick search gives me this blurb:
Very rare (Fewer than 20,000 cases per year in US)
My recollection is that I have heard that there are 30k CF patients in the US. I've also heard long time members of the CF community snort at that figure and say "They've been saying the same thing for decades while the list of alleles known to cause it grows longer."
It's genetic and incurable. So you need treatment for the rest of your life once they ID you.
I've seen articles that suggest that standard conventional treatment is anywhere from $100k to $250k annually. I've also seen articles that suggest it's called lot less than that get discussed on CF lists by people going "Where did they get their numbers? That sounds too low. My expenses are x, y, z."
Vertex $259,000
Cystic Fibrosis Drug Gets FDA Approval
Orkambi treats most common form of the lung disease
Vertex already sells Kalydeco, which treats a different genetic type of cystic fibrosis and has an annual price of $311,000 per patient in the U.S.
I know of a teenager on Okambi in another country. So the market for Okambi is not limited to the thousands of people in the US who have CF. Granted, you have to get separate approval in different countries and that's a genuine burden.
If there are just 100 patients out there that's not a lot of money for the company in the end. Cancer drugs are way more common and yet remain expensive, too.