Montgomery Township, New Jersey

Luxturna

Gene therapy for inherited blindness sets precedent: $850,000 price tag (Washington Post)
The pricing conundrum of long-lasting treatments
Camera : NIKON D5100, Focal length : 24mm, Aperture : ƒ/22, Shutter speed : 4s, ISO : 100, Credit : Khürt L. Williams, Captured : 30 August, 2015,

This is a complicated topic but I think it comes down to working out the answers to some questions.

  • If the discovery/production of something exceptional has costs that can’t be recouped by the group expending the effort how do we incentivize doing the thing?
    • How do we reward exception individuals who put in exceptional effort to produce something exceptional?
    • How do we reward exception individuals who put in exceptional effort to produce something exceptional that only serve a few?
  • If shiny rocks (diamonds, gold, etc.) have a financial value that outstrips their actual utility to the many, then why do we want to financially undervalue something with an exceptional utility to a few?
  • In other words, what is the financial value of a single human being? Should we expend every and all resource for the health of any single human being?

I think your answers to the questions will depend on what life means to you (individually and communally) and your belief system (religious and non-religious).

  • Do you believe life _should be fair__?
    • What does fair mean to you?
    • What does fair mean to your community?
    • Who gets to decide on the definition of fair?
  • Do the needs of few warrant the full blown attention and effort of the many?
  • Or do the needs of the many outweigh the needs of the few (or the one)?

I’ll let the comments say what I want to say.

There is no way this can – or should – be free. I don’t have the exact numbers but estimate it costs $100,000 to $250,000 just to manufacture and deliver the therapy. These are not tablets that can be mass-produced for pennies per unit and stored for three years in a plastic bottle in a pharmacy. Second, this is not a therapy being marketed by ‘Big Pharma’ with its supposedly huge advertising and marketing expenses. Spark is a small company and this is their first product. They do not have the luxury of writing this off as goodwill. Third, if you think $850,000 is expensive, have you looked at how much it costs to be blind? The lifelong medical expenses, accommodations, lost productivity/human potential, and caregiver burden is enormous. Spark did not pull this number out of the air. People just are not used to seeing all that cost avoidance rolled up into one price – but they will after the wave of gene and cell therapies comes to market in the next few years.

Some sarcasm in the comment section:

Excuse me.

breathes heavily through mouth

Look, I don’t mean to be controversial here, but have you guys thought about making this drug that possibly cures an illness that affects only 0.00033% of the population FOR FREE?

I know no such cure has ever existed in the entire history of the planet or anything. I know it must have taken time and effort of multiple researchers, not to mention the time that went into their education, clinical trials, etc. But when you think about it, none of that stuff is really special, this should just be free.

We should just make it free so that whoever developed the treatment can eat the cost and magically come up with more cures for other bad stuff because curing things doesn’t cost them anything they just magically make up cures. They go to a whiteboard and scrawl some garbage and say, “Beep boop!” Then they wave a magical wand and sprinkle pixie dust in a beaker. Next, Neil DeGrasse Tyson and Bill Nye recite some scientific incantations backstage of an episode of Tonight with John Oliver. What’s it to them, reciting some incantations is simple stuff.

So now, I hope you all understand, why this should cost nothing to patients or insurers. Because it costs nothing to create the cure! It’s true. Also, reading through other comments, it’s evident that if patients don’t get treated for blindness, they will die! (It’s true, no blind people have ever existed before this drug, they all died immediately upon birth. Now that this drug exists, there is a moral imperative to stop said deaths, but the greedy corporations have once again screwed over the little guy.)

I’ll add, I think this drug should be SO FREE it should cost less than a subscription to the Washington Post.

Thanks!

I don’t think it’s enough to throw out empty platitudes and endless shoulds. For each every shoud, I would want to hear a plan on how to make it work so everyone’s benefits and everyone sacrifices. I am bored with hearing about how it should be in theory. I want to know how it will work in reality. And I don’t care how it worked in the past. The past does not equal the future.

Luxturna %name

Husband, father, Information security professional and avid photographer living at the junction of Princeton Township, Montgomery Township and Rocky Hill.

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