Jan. 3, 2018

$850,000 Charge for Gene Therapy Is an Outrage

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

Note: Spark Therapeutics has announced it will charge $850,000 per person for Luxturna, a gene therapy for retinal dystrophy, which causes reduced or deteriorating vision in both eyes. Spark’s development of Luxturna has benefited from tax breaks, favorable U.S. Food and Drug Administration designations and public research investments. Public Citizen sent Spark CEO Jeffrey Marrazzo a letter insisting that Spark disclose its Luxturna-related research and development (R&D) costs. Commenting on early speculation from some analysts that Spark may charge $1 million, Marrazzo told The Washington Post, “A more affordable, pragmatic solution wouldn’t be that we took all the value, but took a reasonable amount of it. We thought there was a middle ground between addressing the affordability concerns of payers with the value of the treatment.”

Spark has set a new bar for corporate avarice and insensitivity to the national burden of rising health care costs. Spark’s near-million-dollar charge for Luxturna is an outrage that will hurt struggling families and raise premiums for 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 need to unite and ask, “How much is enough?” Medical corporations charge more for each new treatment – to morally indefensible levels few people would have imagined possible even a few years ago.

Spark CEO Jeffrey Marrazzo’s comments, implying that $850,000 represents something other than greed, are absurd and obscene. Perhaps it’s affordable for a pharma exec – but the inevitable result of Spark’s greed 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 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.

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