A pharmaceutical company forced to reduce the price of a life-saving drug deemed excessive

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A pharmaceutical company forced to reduce the price of a life-saving drug deemed excessive

The annual price of Procysbi jumped some 3000% in 2018, from around $10,000 to over $300,000.

A pharmaceutical company, which has raised the price of a life-saving drug, is overcharging its product and must lower the cost, says the federal agency responsible for regulating the prices of patented drugs sold in Canada.

In a rare ruling this week, the Patented Medicine Prices Review Board (PMPRB) ruled that the price of Horizon Pharma's Procysbi was and remains excessive.

Procysbi contains the same active ingredient (cysteamine bitartrate) as Cystagon, which was marketed by another company. The new drug, however, has a special coating that delays absorption, so that it is released into the body more slowly, meaning it does not need to be taken as often.

Both drugs treat nephropathic cystinosis, a rare genetic disease in children that can destroy the kidneys. Cystagon was only available through a special access program. Procysbi was approved by Health Canada in 2017, blocking the way for the first, yet cheaper.

Parents of young patients were stunned when the annual price of the treatment jumped some 3000% in 2018, from around $10,000 (with Cystagon) to over $300,000 (with Procysbi).

Horizon Pharma qualifies the new and different drug Procysbi.

In its decision, the PMPRB told Horizon Pharma that it should charge a lower price, but the amount is not specified.

The company will present its new price to provinces and territories, which will then determine if they can afford to include Procysbi as part of their health plans. #x27;drug insurance.

An annual cost of around $100,000 is generally considered the maximum the plans can cover.

The company, headquartered in Ireland, must also pay an unspecified sum to the Crown.

We need to consider more generally whether the prices of some of these new drugs are really justified, said Dr. Joel Lexchin, professor emeritus at the faculty from York University, where he is studying pharmaceutical policy.

“When you get hundreds of thousands of dollars a year for the drug – whatever the drug companies justify – ask them to open their books and show us the numbers that justify that they have to charge as much.

—Dr. Joel Lexchin, Emeritus Professor at York University School of Health

Such decisions, which stem from public hearings, are rare for the PMPRB. Since 1993, the Board has reported only 10 such hearings, related to allegations of excessive pricing.

Decisions may be subject to an appeal to the courts, but Horizon Pharma says it won't.

We think it's best to go the extra mile. x27; forward without further litigation, said company spokeswoman Amanda Phraner.

“We will continue to strongly advocate the value of our innovative rare disease drug and the real value it offers to those affected by nephropathic cystinosis.”

—Amanda Phraner spokesperson for Horizon Pharma

PMPRB spokesperson Jeff Wright said he still prefers to resolve these issues through voluntary compliance.

Mr. Wright says the last prescription issued by a PMPRB committee was for the price of Soliris (eculizumab) in 2017. The drug treats two rare conditions in which the body's immune system attacks and destroys red blood cells.

The Soliris decision had undergone a judicial review and appeal which ultimately ordered the patent holder to make an undisclosed payment to the Crown.

Based on text by Amina Zafar, CBC News

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