EpiPens are so expensive that some people are trying to make their own. But the makeshift cure might be just as dangerous as a severe allergic reaction.
After pharmaceutical company Mylan acquired the EpiPen patent in 2007, the emergency allergy medication skyrocketed in price, rising from just over $100 in 2009 to $608 in 2016. A team of DIY drug-makers says it has a cheap fix: a homemade “EpiPencil” that costs $30 and can be assembled from generic parts.
But experts say the at-home remedy is a return to a dangerous, unregulated practice.
The EpiPen is a spring-loaded shot of the anti-allergy medication epinephrine. It’s a lifesaver for people with serious allergies, who can self-administer the shot even if they’re having a serious reaction. But a nearly 600 percent increase in EpiPen prices over seven years, and Mylan’s near-monopoly on the medication has kept EpiPens out of reach of some who need it.
Driven to desperation, some EpiPen users have searched for alternatives, including potentially dangerous tricks like injecting epinephrine straight from a vial. (A near-universal majority of medical professionals advises against this technique; it’s slow, requires a steady hand, and invites the potential for overdose or infection.)
On its face, the EpiPencil might seem like a silver bullet, a pre-measured shot of epinephrine for one-twentieth the price of an EpiPen. It’s the product of the Four Thieves Vinegar Collective, a pharmaceutical hacking group that wants people to make their own medicines at home.
Their EpiPencil design consists of an auto-injector from an off-the-shelf diabetes testing device, a syringe, a needle, and epinephrine, which people with severe allergies can obtain from a prescription.
“Just like that you have an epinephrine injector that functions just as well as an EpiPen,” Four Thieves spokesperson Michael Laufer, who did not agree to a Daily Beast interview, said in an instructional video.
But medical experts say a DIY device is not so simple.
“I look at this and go, there are so many things that could go wrong in constructing it,” Yvette d’Entremont, a former chemist who debunks science myths on her blog SciBabe, told The Daily Beast. “It seems like such a bad idea.”
Her team, which includes a physician assistant, an ER nurse, and a pediatrician, says the cheap medication is too good to be true, pointing to potential errors that extend to the EpiPencil instructional video, which shows Laufer handling the needle without gloves.
“It’s all fun and games until your product gets contaminated and you get a giant abscess in your muscle,” d’Entremont said.
Brand name EpiPens come assembled in a sterile lab, monitored by FDA guidelines. These basic safety protocols shouldn’t cost $600, d’Entremont says—but it’s not worth an error, especially when handling epinephrine, a drug that can cause cardiac arrest if taken in excess. This margin of error is less forgiving in children than in adults, and d'Entremont says an unpracticed parent could easily pull up the wrong amount of medication using the EpiPencil syringe.
“You either don’t start breathing again or you stop your heart,” d’Entremont said.
Those seeking an alternative to a brand name EpiPen could try lesser-known brands like Adrenaclick, a generic epinephrine injector, d’Entremont says. But for many EpiPen users facing a cost crunch, the best cure would also target big pharma’s bloated prices.
Mylan has been able to sextuple its prices due to its near-monopoly on EpiPens, some of which was allegedly earned through questionable means. EpiPens became the go-to brand in U.S. schools after National Association of State Boards of Education head Gayle Manchin pushed legislation to require the medication in school nurses’ offices, a USA Today investigation found. Manchin is the mother of Mylan CEO Heather Bresch. The EpiPen’s strict patents have also blocked new competitors from entering the market and offering the drug at reduced rates.
In a Wednesday hearing, the House Oversight and Government Reform Committee expressed a rare bipartisan interest in regulating the pharma giant.
“Then they used a simple but corrupt business model that other drug companies have repeatedly used,” Rep. Elijah Cummings told Bresch in the hearing. “Find an old, cheap drug that has virtually no competition and raise the price over and over and over again as high as you can.”
But until prices come down, experts urge people with allergies to steer clear of DIY hacks, even if they look like lifesavers.
“What’s going on with the EpiPen is a tragedy. It’s devastating people who don’t have the money to pay for it,” d’Entremont said. “I’m horrified for the person who’s desperate and looks at this like the only chance of keeping their child alive.”