Groundbreaking Blindness Cure Will Come With $850,000 Price Tag

How much is a patient's eyesight worth?

That’s a corollary question that a transformative medical treatment released by Spark Therapeutics seeks to answer. The treatment, known as Luxturna, has the potential to cure a rare genetically inherited form of blindness, according to Bloomberg.

 

Blindness cure

Luxturna

The price tag? $850,000 – or $425,000 per eye.

A transformative genetic treatment for a rare, inherited form of blindness will come with a price tag of of $425,000 per eye, or $850,000 for both, said Spark Therapeutics Inc., the tiny biotechnology company that is bringing the therapy to market.

Since Spark’s Luxturna was approved by the U.S. Food and Drug Administration last month, speculation over the price has grown as it became clear the therapy would be one of the first in a wave of medicines that yield remarkable results after a single treatment - and would carry a commensurate cost.

Of course, few patients will pay the whole amount out-of-pocket. Even for the uninsured, Spark will offer discounts based on whether or not the drug works initially and remains effective for the estimated 1,000 to 2,000 patients in the US with the inherited retinal disease caused by the gene mutation that the medication treats.

Though the price tag also reflects what Spark CEO Jeff Marrazzo describes as the drug’s “life-altering” properties.

“We believe that this price reflects not only the breakthrough, life-altering value of one-time Luxturna, but it will enable us to continue to invest and build on the revolutionary science that supports not only Luxturna but the rest of our pipeline,” Chief Executive Officer Jeff Marrazzo said in a phone interview.

The company’s “novel” pricing scheme was devised to help placate insurers who don’t want to get stuck paying for the entire course of treatment if a patient changes plans while still enjoying the benefits of the treatment, which only needs to be administered one time.

A one-time treatment presented a challenge, since the cost would be paid for by one insurer or government, only to have others reap the benefits when the patient changes coverage.

To help mitigate that dynamic, Spark is rolling out several programs to spread out the cost over the years or give rebates to payers if the benefits wane with time.

For example, the company said it’s discussing a program with the U.S. Centers for Medicare & Medicaid Services that would spread payments for Luxturna over several years, even though the therapy would be given only once. It didn’t say how many installments would be made, or how long it would take to pay the full cost of the drug.

Insurers are also wary of getting stuck with the entire bill if the treatment proves ineffective, or if its benefits only persist for a brief period.

In an agreement with the Boston-area insurer Harvard Pilgrim Health Care, Spark will get the full price of treatment up front. If patients don’t get an immediate benefit - measured at 30 days, or a long term one - measured at 30 months, Spark will have to give some of the money back in a rebate.

Spark has also proposed selling the gene therapy directly to insurance companies or specialty pharmacies. That would sidestep the current process that requires hospitals or health care providers to buy expensive therapies upfront. Spark is working with  Express Scripts Holding Co. on such an arrangement, and said it’s talking with other drug plans.

However, some insurers said they expected the drug to cost even more, considering the narrow customer base.

Express Scripts has been a frequent critic of costly drugs, yet said that the Spark treatment is an exception.

"Many people were anticipating this would be more than a million dollars" said Steve Miller, the St. Louis-based company’s chief medical officer. “In the end, this is a revolutionary product, and I think in most plans this will be covered."

Spark’s biggest challenge may be finding patients to treat.

Of the few thousand people with the disease, only a few have actually been tested and confirmed to have it, since there was no cure, and thus little use in diagnosis. Many with more advanced forms of the disease won’t qualify for treatment, according to the company.

President Donald Trump has shaken pharmaceutical stocks, like he did back in October, when he criticized pharmaceutical companies for charging too much for their drugs, and nebulously threatened to do something about drug prices (though as of yet no direct action has been forthcoming).

However, Spark may need to raise the price if its medication if it doesn’t find enough people to treat. Only a few thousand people in the US possess the genetic mutation that the drug treats. And many of them won’t qualify for treatment.

Spark’s biggest challenge may be finding patients to treat.

Of the few thousand people with the disease, only a few have actually been tested and confirmed to have it, since there was no cure, and thus little use in diagnosis. Many with more advanced forms of the disease won’t qualify for treatment, according to the company.

So, what’s a specialty drug maker to do?

 

Comments

Sudden Debt Sir Edge Jan 4, 2018 2:59 PM Permalink

Because the common person doesn't deserve a cure.

The people who put such a pricetag on this drug are people who say that the common person doesn't deserve to live and that the world is only reserved for rich people...

 

I wouldn't mind if that CEO would be kidnapped and have his eyes spooned out by a Mexican surgeon...

In reply to by Sir Edge

NoDebt Jan 3, 2018 9:34 PM Permalink

Takes new wonder drug... "It's a miracle!  I can see!"

Immediately retreats to bathroom to joyously rub one out... "Oh, my god, I'm blind again!"

 

Amicus Curiae wisehiney Jan 4, 2018 8:43 AM Permalink

well they chose to target that limited pool of customers didnt they?

at 850k x maybe half the people being able to  be helped thats still a shitload of cash and would cover the costs

then theres the entire  worlds sufferers of whatever mysterious un named problem it is to gouge as well.

its outright bastardry.

we have a cure and you cant afford it so go fuckyourself..nice attitude. not

In reply to by wisehiney

Catullus Jan 3, 2018 9:43 PM Permalink

Can we please make a drug that can change the flavor of semen? Like Willy Wonka flavors. I’d gladly spend $2000 on that instead of exercise equipment 

BarkingCat Catullus Jan 3, 2018 11:13 PM Permalink

A man walks into a bank and asks for a million-dollar loan. The banker inquires what the loan is for. The man pulls out a small bottle from his pocket and puts it on the table. Inside the bottle is some yellow colored powder. He tells the banker they sprinkle the powder on a pussy and it makes it taste like an orange.

 The banker tells to get the fuck out of his office and that is the stupidest idea he's ever heard of.

 The man puts the little bottle back in his pocket and leaves. 

 A year later the same man comes back to the bank and asks to open account to deposit 10 million dollars into. 

 The banker says "please don't tell me that idea with the powder actually worked".

 The man pulls out a little bottle containing white powder from his pocket, smiles and says "ironically, you sprinkle this on an orange".

 

 

 

 

In reply to by Catullus

MsCreant Jan 3, 2018 9:45 PM Permalink

This will keep being an issue over and over again, this is why rare diseases don't get cures, no money in it. Something needs to be made factory/industry like about this process of curing peculiar genetic aberrations. 

cheech_wizard MsCreant Jan 3, 2018 11:40 PM Permalink

Reminds me of Lorenzo's oil. It takes a person like Don Suddaby to devote his time and energy into getting the job done.

Lorenzo's oil costs approximately US $440 for a month's treatment.[7]

In the U.S., Lorenzo's oil is currently available to only the patients taking part in a clinical trial under the direction of the Kennedy Krieger Institute. Thus, Lorenzo's oil can be obtained only through prescription by Kennedy Krieger Institute-authorized physicians. A 500-ml bottle costs approximately $56.00. Some insurance companies will provide coverage for the oil, but others do not because it is still considered an experimental drug by the Food and Drug Administration (FDA).

Makes me wonder if Crispr ultimately (http://crisprtx.com/) is a better route to go.

https://www.wired.com/2015/07/crispr-dna-editing-2/

 

In reply to by MsCreant