It truly is a miracle and a breakthrough, and the only shame is that these brave pioneers are only getting $3 million for their heroic efforts.
Meanwhile the actual cost of the medicine is $10k a dose.
Companies often have programs that provide the drug free of charge (or at a nominal price) to people without insurance. They might also have “copay assistance” programs where they reimburse patients for their copay to bring the out of pocket costs down.
The goal is to maximize the amount billed to insurance companies. They’ll go out of their way to reduce the amount billed to the patient directly, because that results in more patients signing up and enabling them to bill more insurance companies.
It’s not a good system, but it’s how things work right now. Nobody pays that $100-300K price themselves. Well, we all do through higher insurance costs.
Alternatively, we all pay those sky high prices. It’s baked into our premiums.
The main difference between US healthcare and socialized health care is that in the US, nobody is responsible for lowering healthcare costs... and so they go up. Why do you think PE loves buying up healthcare facilities?
I have the best insurance policy my employer offers, where I have a $250 annual out of pocket max. I pay an additional $230/mo for the coverage over their base plan; I pay $900/mo to add my wife to the plan.
I'm just one datapoint, and there may be better plans out there, but you're presenting an alternative that doesn't exist for 95% of Americans.
- $4,000 deductible
- $8,000 Out of pocket max
- $1,800/year premiums while employed, $7,200/year premiums on COBRA if unemployed.
On an $80,000/year salary.
That's cheaper than I pay with my employer covering most of my healthcare. That could be literally lifesaving for friends of mine who currently have to choose between paying about $800/month for insurance with deductables or going without.
A big part of the goal is being able to bill a profit, insurers generally require significant drug rebates for coverage. So you triple the sticker price of the drug, offer a 66% drug rebate which the insurer can advertise to their client under the guise of fighting for their access, and they cover your drug at essentially the price you wanted for it in the first place (modulo nonsense like prior authorization, and insurance kickbacks).
Vertex's copay assistance is also very generous, even for those with high income. I have a good developer income, and pay essentially nothing.
I imagine that when an auto body shop pays their customers’ deductibles, it is fraud, legally and ethically.
https://www.cff.org/about-us/our-history
> 2014: The CF Foundation sells royalty rights for CF treatments developed by Vertex for $3.3 billion – bringing resources to the fight against CF never thought possible
CFF funded the original research https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3219147/ and then made the drug unavailable to most patients. How do these people sleep at night?
What are you talking about? The CFF invested in the research being done at Vertex and then sold their shares in the investment. There are no licensing fees.
> made the drug unavailable to most patients
Where’s the data showing the majority of CF patients aren’t receiving Kalydeco or Trifekta?
Last I checked only 8 of 13 provinces/territories in Canada pay for it, and only for children and adolescents - adults are excluded.
The UK also refused to pay for it but I think that was resolved? Been a while since I checked.
Maybe they should just rebrand to CF Investment Fund then. I thought it's a charity with a mission of improving the lives of CF patients not an investment vehicle that happens to invest into compounds around CF. I hope the patients who contributed to the charity and now can't afford the drug are happy with the rate of returns