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$850,000 Gene Therapy Not Worth It, Report Shows

Jan. 17, 2018

$850,000 Gene Therapy Not Worth It, Report Shows

Statement of Peter Maybarduk, Director of Public Citizen’s Access to Medicines Program

Note: A new report from the Institute for Clinical and Economic Review (ICER), a non-profit that evaluates medical treatments, says that Spark Therapeutics’ $850,000 Luxturna gene therapy for retinal dystrophy, “does not meet standard cost-effectiveness thresholds.”

Spark’s near-million-dollar charge for Luxturna is an outrage that hurts patients and raises premiums for all of us. Spark has set a new low for corporate avarice and insensitivity to the national burden of rising health care costs.

The consequences are both immediate and long-term. When we fail to hold accountable a corporation that sets a new standard for greed, others will follow suit, ultimately making unaffordable the treatments each of us and our families need.

Consumers, doctors, patients, payers and families need to unite and ask, “How much is enough?” Medical corporations charge more for each new treatment – to morally indefensible and exorbitant levels few people would have imagined possible even a few years ago.

Beyond questions of value, we have to ask, “What is a fair price?” Even a cost-effective designation from ICER does not mean that a price is reasonable, affordable or fair. We should support medical breakthroughs with efficient investments, and not simply accept whatever a corporation believes it can extract from patients.

Spark also must disclose its R&D costs for Luxturna so that analysts, payers and the public have a basis to assess Spark’s decision. The public deserves to know what return we can expect on our taxpayer support for Luxturna.