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Editorís focus: What looks like outrage might be necessity
January 2018
by Jeffrey Bouley  |  Email the author
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Once or twice a year usually, Public Citizen is good for spurring my idea for this editorial column that I write 11 times each year (nod to my publishers for penning that twelfth one). As I’ve noted at some point in the past, I have experience working with advocacy groups on editorial/communications issues, so I do have affection for them. At the same time, I recognize that they have agendas—as do the corporate or government targets of their ire—and so I give them the same critical eye I do everyone else (that pesky skepticism of the old-school journalist).
 
Sometimes I’m on the side of Public Citizen, but most of the time I honestly feel like they assume more evil intent in the pharma and biotech world (and the regulatory world) than actually exists there.
 
And so it is with one of their latest news releases, titled, “$850,000 Charge for Gene Therapy Is an Outrage.”
I’ll give them the first word so that I can have the last one; it’s the advantage of this being my column, after all.
 
Anyway, as they worded their outrage:

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 healthcare 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 healthcare 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.
In all fairness, I thought that posting their entire statement verbatim is more important than me paraphrasing and abridging and possibly skewing things. So, my feelings?
 
I agree—only with the idea that it would probably be a very good idea for Spark to release thorough information on R&D costs.
Frankly, I wish all biotech and pharma companies did so, but most especially the Big Pharmas and those that don’t quite make that classification but have expensive and/or blockbuster therapies in their hands.
 
The assumption among many people, as with Public Citizen, is that corporations are greedy and heartless at their core. And this seems to be especially true with respect to pharma and biotech, which people seem to routinely accuse of jacking up prices just to get rich or hiding the cure to cancer (or Alzheimer’s or whatever) so they can keep providing long-term treatments for better profits.
 
And while many of you readers are bench-level scientists at pharmas and biotechs (or their supervisors) and probably realize what goes into R&D for potential therapeutics, it might be rash to assume that just because you take a paycheck you know the inside workings. After all, I’ve never known the full budgets or expenses of any place I’ve worked at, despite being upper-level management for much of the past 20 years.
 
So, while I cannot comment on Spark specifically, let me remind everyone (Public Citizen included) of what the Tufts Center for the Study of Drug Development noted in 2014: Developing a new prescription medicine that gains marketing approval was estimated at that time to be running just under $2.6 billion—not to mention that it often takes around a decade, and sometimes 13 to 15 years, to get from discovery to commercialization.
 
Note also that this 2014 study followed a similar one by Tufts in 2003. In the intervening years, the cost of getting a drug to market had increased by 145 percent. And considering the most recent information from Tufts is now a little over three years old, does anyone really think costs haven’t continued to rise for pharma and biotech?
 
Now, this doesn’t mean I assume the $850,000 price tag from Spark is fair. But what I do know is that gene therapy is still very new and very tricky, and so I expect it would be very costly. This isn’t just another pill going after a GPCR target, which is expensive enough—this is a whole new world.
 
So, yes, Spark should be transparent about its expenses and, if they are being greedy, they should scale back to something saner and apologize. But at the same time, folks like Public Citizen need to be prepared to find out that the only way to do these very advanced therapeutics right now might be to charge a very high price for them.

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