Luxturna

Gene therapy for inherited blindness sets precedent: $850,000 price tag (Washington Post)

The pricing conundrum of long-lasting treatments

This topic is complicated, 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 incentivise doing the thing?
    • How do we reward exception individuals who put in exceptional effort to produce something extraordinary?
    • How do we reward exception individuals who put in outstanding effort to create something extraordinary 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! dr mcrib

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.

Port Brewing Company's Nelson the Greeter

I am drinking a Nelson the Greeter by Port Brewing Company at Montgomery Hills.

[exif id="34892"]

Beer: Nelson the Greeter
Style: IPA - American
Alcohol by volume (ABV): 6%
IBU: 0
My rating: 3.25/5
Venue: Montgomery Hills, NJ
Brewery: Port Brewing Company, San Marcos, CA, United States
Brewer's notes: Paying homage to a rather (in)famous surf spot/clothing optional beach in San Diego, Nelson the Greeter is the newest hoppy offering from Port Brewing. Using the brash flavors of Nelson hops to lead the charge, the Greeter has a strong hop supporting cast using Denali, Lemon Drop and Mosaic varietals to round out this pale ale. Notes of gooseberry and passionfruit dominate the nose with a clean tangerine and freshly cut stone fruit notes leading to a smooth, bitter, citrus finish. The pale ale will be quite the experience…kind of like a naked Nelson greeting you at the trail head.

Why Perl Didn't Win

Why Perl Didn't Win by Big Blue Marble LLC

With every year that passed, as Perl 6 produced more press releases than actual code, the attractiveness of Perl as a platform declined. Sure, it still had users. Sure, it still had people starting new projects. (The Modern Perl movement was a decent attempt to bring wider enthusiasm back into the ecosystem by dispelling some of the worst myths of the language. It modeled itself after JavaScript: The Good Parts without realizing that Perl lacked JavaScript's insurmountable advantage of ubiquity. Who could have predicted that Objective-C would be interesting again a year before the iPhone came out?)

 

 

What it didn't have was a clearly defined future, let alone an articulated one.