[Ip-health] Gene therapy inaccessibility an outrage

Peter Maybarduk maybarduk at gmail.com
Fri Jan 5 08:27:23 PST 2018

---------- Forwarded message ----------
From: Peter Maybarduk <maybarduk at gmail.com>
Date: Wed, Jan 3, 2018 at 5:10 PM

$850,000 Charge for Gene Therapy Is an Outrage

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

Jan. 3, 2018

Contact: Nadia Prupis, nprupis at citizen.org, (202) 588-7779
Angela Bradbery, abradbery at citizen.org, (202) 588-7741

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 (available at https://www.citizen.org/sites/
default/files/luxturna_letter_from_public_citizen_to_spark.pdf)  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

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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