[Ip-health] Confirmed: Spark Corporate Greed

Peter Maybarduk maybarduk at gmail.com
Wed Jan 17 09:30:59 PST 2018

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

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

Jan. 17, 2018

Contact: Don Owens, dowens at citizen.org, (202) 588-7767, Angela Bradbery,
abradbery at citizen.org, (202) 588-7741

*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 development of
Luxturna has benefited from tax breaks, favorable U.S. Food and Drug
Administration designations and public research investments. Public Citizen
twice has written
Spark CEO Jeffrey Marrazzo insisting that Spark disclose its
Luxturna-related research and development (R&D) costs. Marrazzo has yet to


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




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