DIY Drugs

Sonya Collins

Hippocrates, author of the Hippocratic oath, said that “Desperate times call for desperate measures.” It’s believed that this saying was boiled down from his justification for using extreme cures for extreme diseases around 400 BC. 

Nearly 2,500 years later, a different set of desperate circumstances are pushing people to take desperate measures for their health care. In the face of exorbitant costs, prohibitive state or federal regulations, or the often-sluggish FDA approval process, patients are taking to the internet to learn how to make their own drugs and medical treatments. 

“Access is a key piece of understanding the DIY movement,” said Anna Wexler, PhD, assistant professor in the Department of Medical Ethics and Health Policy at the University of Pennsylvania Perelman School of Medicine. “There’s usually some kind of access barrier—that an actual product doesn’t exist or that there’s stigma or cost barriers—that people are trying to overcome.”

The nature of DIY medicine—that patients are circumventing traditional medical care to administer homemade pharmaceuticals and other therapies to themselves—precludes reliable data collection about the scope of the issue.

“There is no good data on prevalence or scope,” Wexler said. What there is, she said, are individual reports of people or groups making or modifying treatments across a range of health conditions and medical specialties. 

There’s also not a universally agreed-upon definition of DIY medicine. But it can include modifying a drug or device in some way or making the therapy from scratch. 

Sites for hackers, rebels, and anarchists

Four Thieves Vinegar Collective, a self-described anarchist collective whose tagline is “harm reduction for the living,” provides on its website an instructional video on how to make misoprostol-only abortion pills using misoprostol powder sourced from online veterinary pharmacies (misoprostol is indicated for ulcers in horses), confectioner’s sugar, cornstarch, and a pill press. 

Another video on the site offers instructions for making the medication in the form of a dissolvable card that can be sent by mail or hidden in plain sight. In another video, viewers learn where they can find the cards hidden around their own town. 

Also under “Women’s Health/Uterine Defense Suite,” Four Thieves offers recipes for emergency contraception and repurposing Viagra for menstrual cramps. 

“This is another big driver of DIY medicine—the democratization of access,” said Lisa Rasmussen, PhD, an associate professor of philosophy at University of North Carolina. “Especially for things like abortion pills. We want this to be accessible in places where it might not be, so we’re going to empower you with this because there’s no reason to turn to the government to approve everything.” Rasmussen’s research focuses on medical ethics.

Elsewhere on the Four Thieves site, users can learn how to make nano-silver tooth sealants for less than 40 cents per tooth and an epinephrine autoinjector to replace an EpiPen for just over $30. 

In addition to medication how-to’s, the site gives guidance on a DIY home lab made with items that can be purchased online. 

For some, and as the term “anarchist collective” might suggest, DIY drugs aren’t about avoiding the high cost of drugs via conventional channels. They are about a principle. 

“There shouldn’t be a government monopoly that decides which medications must require a prescription,” said Jeffrey Singer, MD, a senior fellow at the Cato Institute in the Department of Health Policy Studies. “A lot of people probably resent the fact that government gatekeepers are treating them like children, telling them what they can and cannot do. In many cases, DIY medicine is a rebellious assertion of autonomy.”

The #wearenotwaiting movement, spearheaded by Dana Lewis, can be described as a “rebellious assertion of autonomy.” Tinkering with her glucose monitor to try to make the alarms loud enough to wake her up in the night, she ended up, helped by contributions from and collaboration with other hackers, closing the loop between her glucose monitor and her insulin pump so that it would deliver insulin as needed without her intervention. Instructions on how to do this are available online at OpenAPS.org. 

Social media

On the social media forum Reddit, users can learn how to make all kinds of therapeutics—among them a DIY fecal transplant. 

“People are getting stool from spouses, their kids, their friends, and transplanting it into themselves,” said Wexler, who has authored papers on DIY fecal microbiota transplant (FMT), the scope of the practice, and how physicians respond to patient reports of it. “They are mimicking a technique that they heard was effective but that they can’t get access to.” 

Before FMT became more widely accessible for treatment-resistant Clostridioides difficile, people with the chronic bacterial infection took a chance on DIY versions of the therapy. Now, it’s easier to get FMT for that indication, but people may still try it on their own for other off-label indications, Wexler said. 

Multiple videos on YouTube teach viewers how to open a 2.4 mg prefilled autoinjector of Wegovy and separate it into smaller doses. The demand for this guidance, according to online comments, arose from patients’ inability to afford the drug or to tolerate 2.4 mg, the only dose that their insurance approved. 

A role for pharmacists?

While some pharmacists’ initial reaction to the concept of DIY medicine may be “Don’t do that,” a different approach may better serve patients.

“Think about how you can counsel patients in a way that keeps them coming back to you and gives you a better chance of helping them if the need arises,” Rasmussen said. “No shaming or belittling, but just empowering them with information and telling them where you have concerns.”

Wexler has researched the responses of gastroenterologists whose patients ask them about DIY FMT. Most, she said, take a hard line against the practice. 

“But their position changes a little when patients say things like, ‘I’m going to do it anyway, doctor. Can you just advise me on how to make it safer?’ That opened the physicians up to providing some sort of tip on harm reduction,” Wexler said. “Personally, from having studied this movement, I think the harm reduction approach is probably the better one.” ■