2,000% price hike on infantile spasms medication ‘predatory behaviour’: Neurologist

September 24, 2015

By Deron Hamel

A 2,000-per-cent price hike on a medication to treat infantile spasms is “predatory behaviour” on the part of Questcor Pharmaceuticals and drug companies could hike prices on other seizure medications if policies aren’t put into place, says pediatric neurologist Dr. Carter Snead.

300Infantile spasms – also called West syndrome – is a catastrophic seizure disorder found in infants, usually four to eight months old, that is characterized by spasms, an interictal electroencephalogram (EEG) pattern called hypsarrhythmia, and intellectual disability.

The most effective treatment for infantile spasms is Synacthen Depot (Cosyntropin), a synthetic form of the pituitary hormone known as adrenocorticotropic hormone (ACTH). Without prompt and effective treatment, an infant will develop severe neurological and cognitive impairments.

In February 2015, Questcor Pharmaceuticals, which has acquired the rights to market Synacthen Depot, raised its price from $35.66 to $801.19 per vial. The cost of the required six-week treatment skyrocketed from about $750 to almost $17,000.

Toronto’s Hospital for Sick Children and the Ontario Drug Benefit (ODB) program negotiated the price down to $680 per vial. The price tag for a treatment course will run $14,280.

The exorbitant price increase bears weight on the public health system, says Snead, an expert in the treatment of infantile spasms.

“They (Questcor) have done absolutely nothing to justify this huge price increase,” Snead says. “There has been no investment in research (and) no investment in drug development. This is completely ugly pricing behaviour.”

In June 2014 Questcor acquired the rights to Synacthen distributed in Canada and Europe. Questcor had previously acquired distribution rights in the U.S. for a natural ACTH product, H.P. Acthar Gel, and raised the price of the medication from about $50 per vial to $28,000 per vial.

Snead says this is an example of price gouging on the part of pharmaceutical companies and fears things could get worse.

“My concern is that this is a harbinger of things that will come in the near future,” Snead says. “This is predatory behaviour on the part of drug companies – period.

“This won’t be the last time this happens. Canada, the United States and Europe need to put some kind of system in place so manufacturers of drugs … have to follow strict regulations following price increases, and the increases cannot exceed the consumer price index.”

In March, one month after the price hike, Snead formally complained to the Patented Medicine Prices Review Board (PMPRB) in Ottawa, asking for the matter to be corrected. He also mobilized the Canadian League Against Epilepsy and the Canadian Child Neurology Society to follow suit.

The effort was all for naught, Snead says.

“It turns out that if the drug is no longer under patent protection, then pricing doesn’t fall within (the PMPRB) jurisdiction,” Snead says. “Once again, the (drug companies) are getting away with murder, and it seems that nothing legally can be done about it.”

The issue of price gouging by pharmaceutical companies received worldwide attention this week when it was announced that a U.S.-based pharmaceutical company raised the price of Daraprim, a medication to treat the parasitic infection toxoplasmosis, which is often found in people affected by HIV and cancer, by a whopping 5,000 per cent.

After a global flurry of anger and criticism was directed at Turing Pharmaceuticals’ CEO Martin Shkreli on social media, the company announced it would lower the price.

“I wouldn’t be surprised if he (Shkreli) looked at the experience Questcor had and said, ‘Hey, this is a strategy to make a lot of money,’” Snead says.

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