Rare paralysis treatment drug that used to be free now costs over $100,000 a year, thanks to Big Pharma price gouging

A lot of drugs have been on the market for quite a long time. Created decades back, some of these have fluctuated over the course of their existence with patients not having any trouble adjusting to the changes, except in certain cases.

One such case is a drug now called Keveyis. The drug was first called Daranide when it was initially approved in the 1950s, and it was mainly used in treating patients who suffer from glaucoma. In the beginning, its price was said to be so unremarkable that patients can't even recall exactly how much it cost at the pharmacy counter back then. However, it has now skyrocketed to well over $100,000 per year.

To understand what could trigger such an obscene increase in the price of Keveyis, we have to look at how it is synthesized, manufactured, and eventually, how it is sold to consumers -- which will provide a glimpse of how the legal implications that it has been embroiled.

Roller coaster of price changes

In an interview with the LA Times, Don Anderson, a person who suffered from a genetic illness known as periodic paralysis, said that the drug was priced at around $250 to $300 per month after it was discontinued in the country -- the drug had to be imported from either Europe or South Korea. It was then acquired by other companies until it settled with Sun Pharmaceutical Industries, which launched it as Keveyis after it was approved as a rare-disease treatment for periodic paralysis. While it has long been available as a drug to treat periodic paralysis, the new name also came with a hefty price increase of $13,650 for a bottle of 100 pills.

The worst blow, however, came when the drug fell into the hands of biotech company Strongbridge Pharma, which acquired it for $8.5 million in 2016. Under the new company, the drug's price skyrocketed even more -- to $15,001 per bottle. The LA Times sought comment from Strongbridge Pharma's spokesperson Lindsay Rocco, but she declined to answer.

Double-edged sword

Rachel Sachs, an associate law professor at Washington State University in Saint Louis, sees the case of Daranide/Keveyis as just one example of how broken the pharmaceutical drug system is. "I'm constantly hearing that public pressure, public shaming will be sufficient to curb these bad actors in these industries. It often feels if you take your attention off of them, even for a second, they'll revert to these old ways," says Sachs. "It's just another example of how the system has some problems that need to be fixed."

Strongbridge Pharma claimed that there are positives in the current arrangement -- arguing that, despite its high list price, they've made the drug readily available for patients who need it in the U.S. However, this is still a clear indication of the reach of big pharmaceutical companies. Since there is barely any regulation, they can exercise so much power over the consumer. Moreover, they can still profit more by merely shifting the costs to third-party insurance companies, in the guise of helping patients navigate their insurance plans and even offering to help patients pay for the drug otherwise. This only goes to show that, when it comes to setting availability and prices for drugs, the patients are entirely at their mercy.

Read more about big pharma in DrugCartels.news.

Sources include:

LATimes.com

Investors.StrongbridgeBio.com[PDF]

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