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Price Tag On Gene Therapy For Rare Form of Blindness: $850K (apnews.com)
A first-of-its kind genetic treatment for blindness will cost $850,000, less than the $1 million price tag that had been expected, but still among the most expensive medicines in the world. Several readers have shared an Associated Press report: Spark Therapeutics said Wednesday it decided on the lower price for Luxturna (Lux-turn-a) after hearing concerns from health insurers about their ability to cover the injectable treatment. Consternation over skyrocketing drug prices, especially in the U.S., has led to intense scrutiny from patients, Congress, insurers and hospitals. "We wanted to balance the value and the affordability concerns with a responsible price that would ensure access to patients," said CEO Jeffrey Marrazzo, in an interview with The Associated Press. Luxturna is still significantly more expensive than nearly every other medicine on the global market, including two other gene therapies approved earlier last year in the U.S. Approved last month, Luxturna, is the nation's first gene therapy for an inherited disease. It can improve the vision of those with a rare form of blindness that is estimated to affect just a few thousand people in the U.S. Luxturna is an injection -- one for each eye -- that replaces a defective gene in the retina, tissue at the back of the eye that converts light into electric signals that produce vision. The therapy will cost $425,000 per injection.
Dude, if CRISPR can done in a home garage lab, you can bet your ass that people will flying to Asia to get this done on the cheap. Now granted, that's a big risk. But...this tech is getting cheaper, and where ever there's red tape, there's nothing a passport and a flight ticket can't fix.
Life is not for the lazy.
That's kinda like saying the Turing machine was invented at a public university on public dime. So why is Intel charging $350 for a processor.
If they were charging 350/eye I don't think anyone would be complaining. The problem is the drug industry has been raping the US lately. Have HEP-C, 85 grand, and then there was shekal(sp?) who raised priced on old drugs just because he could. Epi-pens also spiked and had no changes to justify the price surge. And then we have the drug industry that has totally abandoned antibiotics. Something almost all of us need from time to time. Just not profitable.
A gene therapy for a disease that has a pool of potential patients in the thousands costs nearly seven figures? Absolutely shocking! If we can put a man on the moon, surely we can defeat the law of supply and demand!
But ironically, if it works, it makes far more sense than a lot of the emotion-driven spending we do via public healthcare programs and private insurance such as spend hundreds of thousands on treating quite possibly terminal disease in people past their gender's life expectancy.
How about another example? We treat funding cancers that mainly impact retirement age women as the highest cancer priorities, but people doing childhood cancer treatment practically have to sell drugs and do bake sales to get any real funding. Fuck you 6 year old sally, we can't have your parent's 65 year old neighbor die of breast cancer because she's a voter and you're not.
You'd be guessing wrong, more or less. The company has been developing this drug since October 2007, ten years ago. Their 2016 annual report shows they spend about $86 million / year on internal R&D, mostly for this drug in recent years. That's "e.g. all the hard work".
They also booked $10 million in external R&D for this drug in 2016, but that number is going to get bigger. External R&D is the company paying the university (Penn) for the research the school did over ten years ago. Now that the drug has been approved and it's going on the market, the company will have to pay the school another $3.8 million plus about 5% royalty on all sales. 1,000 patients at $850,000 is $850 million. 5% of that is $42 million. So the school will get about $42 million royalty, plus the $3.8 million base, plus the millions they've already received. Figure the school may have spent $200,00-$500,000 on the initial research, they are doing extremely well. Something like $300K spent on research will net the school about $60 million.
http://ir.sparktx.com/static-f...
So how do we fix this?
We have readers who are experts on economics, law, medicine, and game theory(*). What's the solution to this?
There are rare diseases that affect only a handful of people in the US, and there are tons of medical procedures and devices which could be used but aren't.
Two anecdotes: a) I talked to a doctor at Berman-Gund (Boston) who claims to have a cure for a rare inherited disease that affects only 450 people in the US, but has given up because it's too expensive to develop(**). b) My dentist (heavily involved in research at Tufts) mentioned that there's lots of new diagnostic methods available, but insurance companies won't allow them because they're afraid they will turn up undiscovered conditions that are expensive to treat. Essentially, it's cheaper (in the actuarial sense) to let things go until they are untreatable so that the patient dies quickly.
A) What are the characteristics of a system that fixes these problems, and
B) How do we get from where we are to that system?
(*) For a situation with an incentive for better health.
(**) Meaning: With only 450 potential patients, there is no potential profit and no one is willing to pay for development, trials, and certification
This is very informative, thank you. Given those figures, 850k looks depressingly like breakeven for the company (if that 86mil/yr was all for this, it would take them (860mil+10mil+3.8mil)/0.95 = 919.79 mil revenue to break even, or about 920k per for 1k patients). I'm sure they have some profit baked in to the figure, but not as egregious as the summary headline sounds by itself.
> Not so much
Yes. Pretty much. Even the NIHs own paper on this subject indicates that the bulk of money spend on drug development comes from the private sector.
The money that the public spends only gets the ball rolling. It doesn't finish the process.
Plus this isn't your typical "one size fits" all pill kind of treatment. These kinds of treatments have to be custom made for each patient. The cost of that isn't trivial. It requires the employment of a large state of the art facility and staff that goes with.
Actual production costs are non-trivial here.
A Pirate and a Puritan look the same on a balance sheet.
And all we can find to do is bitch about the price? Maslow is indeed a harsh mistress.
This is amazing stuff, folks. If you want more of it, leave the profit motive in place. If you want less of it, do the opposite.
> Good thing nobody asked you for the definition of "medicine", because it doesn't mean "a chemical".
Calling this thing a medicine really contradicts the vernacular understanding of what a medicine is. This leads to a lot of butt hurt about how expensive this procedure is when people don't fully understand that it's bespoke manufacturing for a single patient.
So yeah, calling this thing a "drug" or a "medicine" is really pretty stupid.
The point of language is communication, not getting your rocks off "sounding fancy" or being a grammar nazi.
A Pirate and a Puritan look the same on a balance sheet.