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Selling Every Organ in Body Still Wouldn't Be Enough to Pay for Cure for Blindness Procedure

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A biotechnology company has developed a therapy that it says will cure a rare type of blindness. However, the treatment, known as Luxturna, comes with an enormous price tag.

Spark Therapeutics will charge patients $850,000 for the treatment, equivalent to $425,000 per eye. The one-time treatment, which was approved by the FDA in December, can be used to cure people who are afflicted with an inherited genetic disease that causes vision loss, according to NBC News.

The therapy was expected to cost even more — roughly $1 million — but the price was lowered after Spark realized that health insurance companies might have a hard time covering the costs of the  treatment.

The cost might be somewhat lower, but it’s still extraordinarily expensive.

In 2012, KSFM calculated that if a person tried to sell their body parts on the black market, they could get a combined $810,381, thus indicating that selling your organs still wouldn’t produce enough money to pay for the procedure.

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According to Spark CEO Jeffrey Marrazzo, though, the price is “responsible.”

“We wanted to balance the value and the affordability concerns with a responsible price that would ensure access to patients,” Marrazzo told The Associated Press.

Dr. Steve Miller, who serves as the chief medical officer of Express Scripts — a pharmacy benefits management company that is partnering with Spark to distribute the treatment — admitted that Luxturna is expensive.

However, he echoed Marrazzo’s belief that the price is just right.

“It’s wildly expensive but, to be very frank, I think they’ve priced it what I’ll call responsibly,” Miller told CNBC. “The product is just phenomenally innovative, and we’ve been talking about gene therapy for over 20 years. We’re now at the threshold of having gene therapy reaching patients.”

Spark has argued that the cost of the therapy is actually less than what patients would otherwise pay if they were blind for their entire lives — especially when considering lost wages and caregiver costs.

But though the biotech company says a lifetime of blindness can cost upwards of $1 million, a non-profit group called the Institute for Clinical and Economic Review disagrees.

According to the institute, in order for the Luxturna “to be a cost-effective intervention,” its price tag would have to be much lower.

The group came to this conclusion by assuming that the therapy only works for 10 years. Spark says the one-time treatment lasts a lifetime, “though it has only tracked patients for about four years,” the AP reported.

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“It came down to the value we believed was inherent in the therapy,” Marrazzo said. “We also heard and did market research with payers … and wanted to take into account the questions and challenges they had about affordability.”

“Ultimately this is about access.”

The therapy itself works by delivering to patients “a healthy copy of a gene” — known as RPE65 — “to make up for one that’s deficient in a way that causes disease,” according to CNBC.

The company believes that between 1,000 and 2,000 people in the United States are affected by mutations in the gene.

In order to help patients pay for the therapy, Spark is working with health insurance providers, including the Centers for Medicare and Medicaid Services, to ensure that people who need the treatment can get it.

“We have been working with stakeholders across the health care sector to help ensure that appropriate patients have access to a product that challenges all of the current conventions of how patients are treated, how products are delivered and how payments are handled,” Marrazzo said in a statement.

For example, the company has proposed allowing insurers to pay for the treatment in installments, as well as refunding money if the treatment doesn’t work in the long term.

“Over these past few months, we have been working with health insurers to create innovative pathways for access to Luxturna that may serve as models for other one-time administered gene therapies in the future,” Marrazzo said.

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Joe Setyon is a deputy managing editor for The Western Journal who has spent his entire professional career in editing and reporting. He previously worked in Washington, D.C., as an assistant editor/reporter for Reason magazine.
Joe Setyon is deputy managing editor for The Western Journal with several years of copy editing and reporting experience. He graduated with a degree in communication studies from Grove City College, where he served as managing editor of the student-run newspaper. Joe previously worked as an assistant editor/reporter for Reason magazine, a libertarian publication in Washington, D.C., where he covered politics and wrote about government waste and abuse.
Birthplace
Brooklyn, New York
Topics of Expertise
Sports, Politics




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