People with diabetes depend on insulin to survive, but the price has tripled in the last decade. Studies show some patients are skipping doses as a result. Given these realities, some Oakland citizen scientists are cooking up their own solutions.
This article has been corrected from the original version. In the original version, we incorrectly said that Jessica Ching’s dog bites a stick when she smells Ching’s blood sugar dropping and that’s a signal to inject insulin. Actually, it is a signal that her blood sugar is low, but not a signal to inject insulin. We also said that Anthony’s father had type 1 diabetes. He had type 2 diabetes. The audio is as aired.
On any given day at Oakland’s Counter Culture Labs, you can find someone developing a new kind of vegan cheese or brewing kombucha. But in this makerspace for scientists, there is another big project brewing — people are making insulin. It’s cottage industry pharmaceuticals.
This lab space in the Temescal district has attracted a wide range of people with varying skills and training in science. Chief among them is Yann Houn de Kermadec, a pHD biochemist from France. He leads the scientific team for the Open Insulin Project, a D-I-Y endeavor to make insulin. That’s D-I-Y as in: de Kermadec's a scientist, but sometimes he’s the repairman. When the machines break down, de Kermadec's has to look up YouTube videos to figure out how to fix them. One machine that requires care and feeding is a High-Performance Liquid Chromatography (HPLC) instrument that will purify the insulin he makes. The machine is so ancient, it still has a floppy disc drive.
“It’s old school. But as long as it works, I’m fine with it,” says de Kermadec.
But while much of the lab equipment is dated, the scientific work happening here is cutting edge. de Kermadec and his team are using genetic engineering to make the insulin. It’s the art of taking a snippet of DNA from one organism and placing it into the DNA of another to give it certain traits and abilities. Yeast by itself won’t make insulin. de Kermadec takes a piece of DNA that has instructions for making insulin and injects it into yeast cells. He then shocks the yeast with a jolt of electricity to get the yeast to incorporate the insulin DNA into its own DNA. Soon, the yeast cells become factories for making insulin proteins. de Kermadec uses a centrifuge to separate the solution, and what’s left is what he calls “the protein of interest.”
After this whole process, de Kermadec is left with proteins that can make insulin. This science is not groundbreaking. The major drug companies have been making insulin this way for decades, and they own the patents on how to do it. What’s special about what de Kermadec and his colleagues do is they’ve figured out their own method for making this insulin — from scratch. And they want to keep their method open sourced. They’re not looking to make a profit. They just want to make insulin that’s accessible and affordable for people with diabetes.
Jessica Ching has type 1 diabetes and is among those concerned about the affordability of insulin. If you have type 1 diabetes, you can’t do without it. “If I don’t have my insulin, and I just do my regular day and eat my regular food, I might live 72 hours,” Ching says.
There’s only three companies that produce insulin, so by default, they control the price. And that price just keeps getting higher. Way higher. Over the last 20 years, the price of insulin’s gone up ten fold. That’s led people like Ching to look for other options.
“So I’m a big do-it-yourselfer. I learned many years ago to take my own health into my own hands,” Ching explains.
She started a group for other diabetics to swap ideas on how to improve the pumps they use to get insulin … and another group that builds an artificial version of pancreas, the organ in the body that makes insulin. And she joined the Open Insulin project two years ago to help the team with research. Not only that — she trains dogs like her two-year-old black lab, Wendy.
Wendy has a little green stick that hangs off her collar. Ching has trained Wendy to bite on that stick whenever she smells Ching’s blood sugar dropping. Ching’s does all this work because she wants to find solutions that are more affordable and livable than what mainstream medicine has to offer her. She says lots of people with diabetes are looking more to each other than their doctors for advice and solutions. She sums it up in the hashtag of the movement: #wearenotwaiting.
But for people like Ching to benefit from the Open Insulin Project, it will take more than just research. Back at Counter Culture Labs in Oakland, seven people sit in mismatched office chairs around some beat up-folding tables. Today they’re discussing their organization’s next steps. Like how to mass produce the drug and get it to patients.
Open Insulin’s founder Anthony Di Franco has type 1 diabetes. His father had type 2. Like Ching, Di Franco wants diabetics to take charge of their own access to insulin.
“There are a lot of reasons why people should be making their own medicine and should have control over the means of doing that,” says Di Franco. “We're seeing right now that a system where people don't control the means of making their own medicine prevails right now. It’s very exploitive of diabetics.”
Ideally, Di Franco wants insulin dispensaries to be like microbreweries run by patients in their neighborhoods. This is a lofty goal, but there’s no real regulation in place for this now. The FDA would need to recognize Open Insulin as a generic drug maker.
In the meantime, the work of DIY groups like Open Insulin are part of a movement pressuring the drug companies to make insulin cheaper. And it’s working. So far, one insurance company and one insulin maker have promised to lower drug prices. But if the Open Insulin Project has its way, diabetes patients will no longer need to rely on those companies’ generosity for getting a medicine they need to survive.