The Rise of DIY Medicine

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Years ago, Michael Laufer visited a local health clinic in El Salvador while on a human rights mission. He was surprised to realize that the clinic did not have common medications like birth control in stock. Since the clinic was situated in an area known for its many illegal methamphetamine labs, Laufer wondered about the possibility of local residents synthesizing medications on their own. If these locals were already cooking meth, he wondered, why couldn’t they start cooking pharmaceuticals?

Laufer is now the leading “pharmahacker” in the United States. He founded the biohactivist website Four Thieves Vinegar, which provides instructions for acquiring drug ingredients and safely synthesizing life-saving medications at home. He first gained recognition with his “EpiPencil,” a DIY EpiPen, which he created shortly after the real thing skyrocketed from $100 to $600 overnight. Laufer’s EpiPencil runs about $30. It consists of the drug epinephrine, which can be purchased with a prescription for $1, and three over-the-counter parts: an auto-injector from a diabetes testing device, a needle, and a syringe.

Laufer has since supplemented his EpiPencil guide with resources for individuals to create an “apothecary microlab” and an outline for synthesizing the antiparasitic drug Daraprim. Next on his agenda? Instructions for preparing an HIV preventative medication, a Hepatitis-C drug, and a combination of Mifepristone and Misoprostol to be used for abortions. But just like Walter White, Laufer has a day job that prevents him from cooking full-time. He is the Director of the Mathematics program at Menlo College, a small private school in California. It is only on nights and weekends that he can work to realize his vision of a world in which we “share medications as easily as we share music and movies” and in which individuals, rather than medical authorities, have control of their bodies.

In the United States, preparing his designs is not legal, but the practice is on the rise, thanks to the unaffordability of life-saving medications. In the last few years, Laufer, who has been dubbed “Pharma’s Robin Hood,” has gained such popularity that the FDA has increased its cautions against the use of homebrew medications. The agency warns that medications synthesized at home are easily contaminated, there is an increased risk of using counterfeit ingredients, and there is an increased risk of creating a sub-potent or super-potent drug. But despite these cautions, the FDA has not banned Laufer from continuing to operate. Nor has the FDA charged any individuals for importing pharmaceuticals online for personal use—another practice that is gaining popularity.

This may be because so many Americans are in the position of deciding between life and death. If, even after insurance, patients cannot afford to pay drug manufacturers’ prices, they will pursue alternative methods of access. For the same reason, patients will risk consuming dangerous treatments. It’s this point—potential harm—to which most of his critics turn. NYU medical ethicist Jennifer Miller, for instance, compares Laufer’s DIY medicine to quack medicine, and she reminds the public that the FDA exists to protect individuals from harm, not to create barriers to access. Shortly after the launch of the EpiPencil, Miller told engineering publication IEEE Spectrum, “He’s basically saying, we should deregulate drugs, and allow anyone to make anything . . . That is not safe. We once had that system, and people died from it.”

But Miller is supposing that medications sold in U.S. pharmacies actually comply with FDA regulations. This is questionable, especially when it comes to medications like epinephrine that require a consistent cold supply chain from factory to distributor. Recently, individuals with diabetes were outraged to learn that researchers found insulin sold in pharmacies to be consistently sub-standard. The researchers randomly tested 18 vials from different vendors; not a single vial tested within FDA-set ranges for potency. Under- and over-dosing insulin can lead to serious complications, including seizure, coma, diabetic ketoacidosis, and even death. The two leading diabetes organizations in the U.S., the American Diabetes Association and the Juvenile Diabetes Research Foundation, are now spearheading efforts for a broader-scale investigation.

“Buying prescriptions in a pharmacy is an enormous leap of faith.”

In a phone interview, Laufer emphasized how DIY medicine gives individuals the ability to audit the entire process. This is his response to critics who often ask, “What if someone who synthesizes at home screws up?” That is possible, but so is error in the traditional chain. “You can’t see if the pharmacist measured corrected, if the medication was stored correctly, or if the manufacturer used the right ingredients,” Laufer says. Buying prescriptions in a pharmacy is an enormous leap of faith.

Laufer’s DIY medicine is just one example of individuals’ ingenuity with health solutions. Some individuals are engineering their own organs and medical technologies—not to save costs but because these technologies are not available. It is estimated that 600 individuals around the world are using a homemade pancreas, a closed-loop system for diabetics that monitors blood glucose and delivers insulin as needed. The external system consists of a continuous glucose monitor and an insulin pump, both of which are available with a prescription. Hackers use code to make the two devices talk to each other, obviating the need to review blood glucose readings, calculate insulin doses, and manually input doses. Like Laufer’s innovation, the artificial pancreas is open-source; individuals can easily find instructions online.

The public can also find online instructions for growing human tissue, engineering prostheses using a 3-D printer, and building a transcranial direct-current stimulation (tDCS) device, which is believed to improve symptoms of depression, neuropathic pain, brain injury, and more. According to history of medicine professor Jeremy A. Greene, “these forms of DIY medicine are powerfully egalitarian, and they foster a vision of technologies as things that users have a role in producing.” Here, Greene emphasizes that many DIY technologies do not simply act as placeholders for future market-approved devices; these technologies also allow patients to design and shape solutions.

Laufer shares this enthusiasm. “The thing I find most promising about the DIY movement is the de-stigmatization of science.” He observes that there has been a long-held belief that science is “only for nerds, when really science is simply the ability to inquire.” Everyone can do that. In fact, he wants people to take his designs and modify them, so that individuals continue to have more and better choices. At the end of the day, that’s what the DIY movement is about: choice.

Of course, there is no guarantee that the DIY movement will never evolve into something resembling the current system. Laufer admits that he sometimes worries about the rise of cottage industries of chemical makers. If individuals were to ultimately become beholden to these manufacturers, then the movement will have lost some of its egalitarian force.

Nonetheless, he believes that the movement signals an impending sea change in the United States’ socioeconomic systems. “Throughout history, there have been these watershed moments when economics and morality come to head to head.” Slavery is an example. Some cautioned that outlawing slavery would upend the entire economy. Others responded, “If slavery is what the economy is based on, then we need a new economy.” The same situation exists today, according to Laufer. The current system, which is based on antiquated notions of intellectual property, makes no sense, and people are ready to revolt.

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About Author

Audrey Farley is the Editor in Chief of Pens and Needles. She recently earned a PhD in English from University of Maryland, College Park, where she studied contemporary American fiction, popular culture, and the medical humanities. She has written for various peer-reviewed journals in the literary fields, as well as outlets such as Public Books, ASAP/J, and Insulin Nation. She lives with chronic migraine and is the parent of a child with Type 1 diabetes. Follow her on Twitter @AudreyCFarley.

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