Dec. 21, 2017                                                                             

Expected $1 Million Charge for Gene Therapy Is an Outrage; Spark Therapeutics Must Disclose Its R&D Costs

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

Note: On Tuesday, the U.S. Food and Drug Administration (FDA) granted Spark Therapeutics marketing approval for Luxturna (voretigene neparvovec-rzyl), a gene therapy for retinal dystrophy which causes reduced or deteriorating vision in both eyes. Analysts expect Spark to announce a price approaching and perhaps exceeding $1 million per person. Spark’s development of Luxturna has benefited from tax breaks, favorable FDA designations and public research investments. Today, Public Citizen sent Spark CEO Tony Marrazzo a letter insisting that Spark disclose its Luxturna-related research and development costs.  

Spark appears ready to set a new bar for pharma corporation avarice and insensitivity to the national burden of rising health care costs. Spark’s expected $1 million price tag for Luxturna is an outrage that will hurt struggling families and raise premiums on all of us.

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 – we need to unite and ask, “How much is enough?” Pharma corporations charge more for each new treatment – to morally indefensible levels few people would have imagined possible even a few years ago.

Even if Luxturna comes up shy of the $1 million mark, the inevitable result of its unaffordability will be treatment rationing, preventable suffering and higher premiums. Our health care system is cracking under the strain. Congress and the Trump administration must establish basic disciplines for medicine affordability.

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

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