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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.

7 of 218 comments (clear)

  1. This is why we need socialism! by Anonymous Coward · · Score: 1, Insightful

    See, evil greedy capitalists made a treatment for a rare disease that costs money and is therefore evil!

    If we just socialized everything then there wouldn't be a treatment for the disease at all and it would be free! Free dammit!

  2. Why call it a medicine? by BlueCoder · · Score: 2, Insightful

    A medicine to me is a chemical. This is a genetic treatment. A procedure. Cellular surgery. But not a medicine.

    1. Re:Why call it a medicine? by jedidiah · · Score: 3, Insightful

      > 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.
  3. Re:Let me guess by Anonymous Coward · · Score: 2, Insightful

    University research is literally just that ... the bare basics.

    Thinking that's all that goes into drug production completely neglects to think about financing, building a production plant, clinical trials, government approval, zoning, regulation, packaging, distribution, etc, etc....

    It's naive to think that because some phd in a university got something working using a benchtop setup and a few generations of lab mice, that we can just jump right on in to production batches that can be sold and administered to actual people.

  4. Re:Let me guess by stabiesoft · · Score: 3, Insightful

    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.

  5. Not really. Company for 10 years, pays the univer by raymorris · · Score: 5, Insightful

    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...

  6. They're literally making the blind see by SlaveToTheGrind · · Score: 4, Insightful

    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.