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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.
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.
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