In this case, it’s people who are suffering from a rare genetic illness known as periodic paralysis who are paying the price. According to the non-profit group Periodic Paralysis International, this disorder leads to temporary bouts of paralysis or muscle weakness that can last anywhere from a few minutes to several days. Some varieties also lead to permanent muscle weakness over time.
One Seattle sufferer told the Washington Post that it can feel like wearing lead shoes all the time or trying to stand up wearing a 50-pound backpack.
Patients have been getting relief from a drug known as Daranide. Originally approved back in 1958 for treatment of glaucoma, it was very cheap for a long time before embarking on a dizzying roller coaster of price changes that has left sufferers confused and frustrated. In the early 2000s, the list price for a 100-pill bottle was just $50, and by 2015, it had gone up to $13,650! After that, it was available for free before spiking back up to $15,001.
The drug’s ownership has changed hands repeatedly over the years, and this is behind the series of dramatic price swings. Merck discontinued Daranide in the early 2000s, and those with periodic paralysis who found it worked better than anything else often went out of their way to import it from abroad, shelling out around $300 a month for relief.
In 2008, a generic drug maker known as Taro Pharmaceutical Industries acquired the medication with the aim of making it available at a reasonable price; a family member of Taro’s owner was affected by the illness, although he took a different drug. This was good news until Sun Pharmaceutical Industries took over Taro and had the drug approved by the FDA as a rare disease treatment for those with periodic paralysis. This gave it not only a new name – Keveyis – but also a new price: $13,650 for a bottle of 100 pills. This type of federal approval gave the firm seven years of exclusive marketing rights.
After questioning from the Washington Post in 2016, Sun Pharmaceuticals announced they’d be giving the drug away for free because they were unable to recoup their investments in marketing and patient support. However, they then sold the drug to biotech firm Strongbridge Biopharma for $8.5 million, who relaunched it at a price of $15,001 for 100 pills.
A group of legislators is pressuring the company to alleviate the price burden and ensure their actions comply with the law, asking them in a formal letter to provide documentation supporting their pricing.
Some patients paying the ultimate price
Strongbridge documents show that the annual price of Keveyis treatment ranges from $109,500 to $219,000, depending on dosage. Some insurers do cover it and the firm offers patients support in getting their insurance to fund it, but that does little to quell the criticism of their pricing strategies. A drug that was once available for free is clearly not expensive to make, and its ridiculous price is nearly impossible to justify.
Sadly, this type of behavior is just par for the course with Big Pharma, and they get away with it again and again. It’s almost as if they actually want people to suffer. In 2016, Mylan came under fire as the price of life-saving EpiPens climbed from $57 to more than $700; they cost less than $2 to produce. The price of the life-extending cancer drug known as Lomustine rose 1,400 percent recently, and patients who are unwilling or unable to pay up will miss out on getting the treatment they desperately need.
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