[Ip-health] Public Citizen: A Million Excuses for Greed -- Spark must disclose Luxturna R&D costs

Andrew Goldman andrew.goldman at keionline.org
Thu Dec 21 07:37:37 PST 2017

Forwarding on behalf of Public Citizen while some email/server technical
issues are being sorted out. See below.

Andrew S. Goldman
Counsel, Policy and Legal Affairs
Knowledge Ecology International
andrew.goldman at keionline.org // www.twitter.com/ASG_KEI
tel.: +1.202.332.2670 <(202)%20332-2670>

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

Dec. 21, 2017

Contact: Don Owens, dowens at citizen.org, (202) 588-7767
Nadia Prupis, nprupis at citizen.org, (202) 588-7779

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 (https://www.citizen.org/access-medicines-america).

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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