An Oakland group of scientists and laypeople want to make insulin affordable to everyone.
Photo by D. Ross Cameron
When Anthony Di Franco moved to the Bay Area after college, he went hunting for hacker space. He had been interested in hacking ever since he was a kid learning about computers in Cleveland, and now that he had a computer science degree, he was eager to see what intriguing projects he could join.
He helped found Counter Culture Labs—an Oakland biohacking space with a fully outfitted lab, where people can do things like learn about plant biology or craft a better vegan cheese—and met someone trying to create insulin, the hormone required for our bodies to process sugar.
Because diabetics either can’t produce insulin (Type 1) or their bodies don’t use insulin correctly (Type 2), many people have to inject insulin daily. Di Franco was intrigued. He had been diagnosed with Type 1 diabetes during his senior year of college, and several of his family members have Type 2 diabetes. What if they could successfully produce a generic form of insulin and share the “recipe” with the world?
It was an ambitious goal. There are more than 29 million diabetics nationwide, and thus a huge demand for insulin. A month’s supply can cost hundreds of dollars, and there isn’t a cheap generic version on the market. That’s because the drug companies own the patent on insulin and make tiny tweaks to their formula every time it comes time for the patent to expire, allowing them to maintain their patent and dominate the market without competition from a lower-cost generic.
In 2015, Di Franco started a group called Open Insulin to work toward the goal of creating insulin that can be produced by a generics company. The group meets weekly at Counter Culture Labs, housed in the sprawling Temescal collective Omni Commons. By the end of 2015, they had raised $12,000 through crowdfunding and started attempting to introduce the DNA strain for insulin into E.coli. At first, it was hard to determine if it was working, so they added a protein that would turn fluorescent green if proinsulin (an insulin precursor) was being produced. Last year, the bacteria started turning green: They had successfully produced proinsulin. Now, they’re working to achieve the same kind of results with yeast, which has a more complex structure.
When Di Franco first started the group, he didn’t think too much about the wide-ranging impacts of their work. “We just thought it was a cool idea; I thought it was cool because I had diabetes,” he said. “Only after we got into it a bit we saw that it could actually change things for the better for diabetics.”
The project’s potential to spur social change drew biochemist Yann Huon de Kermadec to the group. “The emergence of a low-cost drug company could directly affect millions of people’s lives and also demonstrate that insulin prices are not fair,” he wrote in an email.
Plus, there’s the added intellectual puzzle of trying to produce scientifically rigorous results with the lab’s mishmash of resources: “Adapting well known protocol is not exciting scientifically by itself,” he wrote, “but doing it with the equipment we have at the CCL is a real challenge.”
Open Insulin gets lots of unsolicited donations and messages from diabetics and their family members. “I hear from these people how important it is that someone is working on this. In a way, it’s satisfying, but it’s sad at the same time,” Di Franco said. “People who don’t have a lot of money are really feeling the pressure or their family members are suffering from this lack of access to the medicine that they need.”
The project still has a long way to go before the group can achieve its goal of helping diabetics, especially ones without insurance or those living in places with limited access to insulin. Once the group is able to produce insulin, it’ll need to make sure other groups can replicate the results—the group is already in talks with similar projects in Belgium and India.
“Collaboration, creativity, and flexibility are among the few advantages we have. We need to leverage this as much as we can in order to get a great outcome out of Open Insulin,” wrote Winnie Poncelet, who helps leads the Belgian Open Insulin project, in an email. “Moreover, our reason for joining to help the Open Insulin group in Oakland is that it makes much more sense to support someone else’s project if it is in line with what you want to achieve, than to start a new one.”
After that, the groups will weave their way through the U.S. Food and Drug Administration’s labyrinthine regulations, and then, finally, will have to find a company to manufacture the insulin. Yet, even with the long process ahead of them, Di Franco is excited about the headway they’ve made. “What really surprised me was how easy it was to actually make progress once we got determined to do it,” he said. People would volunteer, then drop out once they got a job, he added, but “there always seems to be the right person showing up at the right time to get us through what was tripping us up and get us to the next step.”
The group has several people with Ph.D.s and master’s degrees in related fields who help lead the project, but many, like Di Franco, don’t have any formal biology training. Several members come from local community colleges. “They’re still learning, and they’re using this to learn,” said Di Franco. “People are learning alongside the experts in our group.”
The mix of talent from local universities, plus the large number of biotech companies and labs in the Bay Area—which have sold them equipment cheaper than they’d normally get—has led to the group’s success, said Di Franco. “There [are] a lot of people around here that recognize that there [are] more important things in life that they want to be involved in, [and are] pursuing goals that are actually important. That, I think, is the main thing that makes the Bay Area and Oakland in particular, a really good place to work on this,” he said. “I can’t really think of anywhere in the country that it would be better to try to do this, if not the world.”