Last year, the price of a two-pack of EpiPens—the lifesaving medication used to treat severe allergic reactions—jumped to more than $600, a 450 percent increase in cost since 2004. The price hike came just months after the cost of another medication, called Daraprin, was controversially raised from $13.50 to $750 per tablet. People who rely on these medications pointed out that price gouging created an undue hardship, forcing them to pay unnecessary sums for the drugs they need to survive.
Dr. Mixael Laufer agrees. Laufer is a doctor of mathematics—not medicine—but he moonlights as a pharmaceutical hacker. He says these corrupt practices are irritatingly common in the modern pharmaceutical market, and ethical and legal violations to include fraud and price gouging have cost consumers billions of dollars over the years.
"The flip side to that," Laufer told me, "is me."
Two years ago, Laufer was in Costa Rica when he was diagnosed with MRSA—a severe drug-resistant bacterial infection that's notoriously difficult to treat. Doctors prescribed him a medicine called Doxycycline, which healed the infection. But when he returned to the United States a few months later and his health declined again, he found that he couldn't get care or a prescription for the drugs he needed. Laufer ended up buying Doxycycline on the black market.
Not all Americans have the same means to avert a preventable death. "If I'm in a hospital town with plenty of cash to spend, and I can't get care, something's really wrong," he said.
Laufer had already been working through the idea of how to provide free medication to people in need, but the close call with his own health deepened his conviction to solve the problem. So in 2015, he launched the Four Thieves Vinegar collective—a group of guerrilla hackers and scientists working to reverse-engineer critical pharmaceuticals and provide assistance with the synthesis of the compounds with the goal of providing "open-source" healthcare. The collective's goal is to shift the balance of power for making crucial healthcare choices back into the hands of the individuals, empowering people to make DIY versions of drugs and medical devices in their own homes.
Open sourcing isn't new: Projects based on free and transparent development have been around since at least 1969 with the introduction of the Unix operating system, a computer operating system developed by collaboration and multiple users. But applying the open-source methodology to pharmaceutical consumers is a relatively new idea.
There's a thought experiment called the Heinz dilemma, which goes like this: Heinz's wife is dying from a particular type of cancer. Doctors say a new drug, discovered by a local chemist, might save her. But when Heinz tries to buy the drug, the chemist asks for ten times the amount that it costs to manufacture the drug. Heinz can only raise half the money, even after help from family and friends, so he explains to the chemist that his wife is dying and asks if he can get a discount or pay the rest of the money later. The chemist refuses, saying he discovered the drug and has the right to make money from it. Heinz, in desperation, breaks into the chemist's lab and steals the drug.
If you ask Laufer, he'll say Heinz—and the millions of other Americans who are in a similar position—have every right to access the medicine they need without being extorted. "If denying people access to lifesaving medication is murder, then to go through an act of theft instead of justifying an act of murder is righteous," Laufer told me.
Of course, while access to lifesaving medication might trump the ability to profit on a moral scale, the law doesn't always see it that way. Intellectual property laws in the United States say that not only can we not steal a finished product, but we also can't steal the method for making that product. For many industries, intellectual property law is the cornerstone of their businesses. How these rules translate to situations about life and death, however, is a bit more thorny.
"I take great exception to IP law because you have someone who's dying, and you say, 'I know how to save you, but I'm not going to tell you because that's my idea and I'm not going to share,'" Laufer said.
What Laufer intends to do is provide the means for the public to create their own pharmaceuticals when no alternatives are available. At the heart of his philosophy is the idea that healthcare is an inalienable human right that supersedes any laws of property. As Laufer explained, "There shouldn't be anything keeping anybody from any query. What is the most fundamental human right? The rights we have over our own bodies and minds. We should have the ability to explore intellectually and treat our body in whatever way we see fit."
Last summer, the Four Thieves Vinegar Collective released plans for a $30 version of the Epi-Pen, which it calls the Epi-Pencil. In 2016, it also released the outline for Daraprim, the drug made famous by Martin Shkreli, who jacked up the price in 2015. Laufer said he doesn't track how many people use the plans, since his objective is simply to make them available to those who want them. "I don't know, and I make a point not to make it my business," he told me.
Some, including members of the medical community, have warned of the dangers of self-producing pharmaceuticals at home. "It's all fun and games until your product gets contaminated and you get a giant abscess in your muscle," one chemist told the Daily Beast. Others have criticized the Four Thieves Vinegar Collective for making it easier for drug manufacturers to produce illegal substances.
But as Laufer sees it, if people find themselves in a place of desperate need, the consequences of home-brewed medications may be a calculated risk. Earlier this year, when it became clear that the Affordable Care Act would be under threat, Laufer said he started hearing more from people with serious health issues who were desperate for his help. "I got a flood of emails from people asking, 'How do I make this work?' and 'I'm gonna die in 19 days if I don't get this to work,'" he told me. "It's been hard."
Will open-source pharmaceuticals be the answer for all Americans? Probably not. But it could be a potential option for people without any other options.
"I feel like there have been these moments in history where there's an impasse between morality and economic interest. The most pointed place where we saw it in this country's history was during the Civil War where half of the country was saying, 'People shouldn't be considered property' and the other half of the country saying, 'Yeah, but this is our economy,'" Laufer said. "Ultimately, we decided no economy was worth the compromise of human life. Now, some of us are saying, 'Ideas shouldn't be property,' while others are saying, 'Yeah, but this is our economy.' It's going to come to a head, and I think that something's going to have to give at some juncture and I hope that our work will help to push us ever closer to that future."
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