In this little vial is a manufactured form of insulin. I injected into my body because my pancreas, which normally produces insulin, doesn’t make it anymore. Our bodies need insulin to metabolize glucose to create energy. Access to insulin means life or death for millions of Type 1 diabetics like myself. But since 2002 the price of insulin has more than tripled. The market is dominated by three companies: Eli Lilly, Novo Nordisk and Sanofi. But there’s a team of biohackers in Oakland, California who are trying to change that. Insulin is not all that hard to make. We are developing a technique that is based on pretty standard ways of producing and purifying proteins. Anthony Di Franco is a Type 1 diabetic who’s testing an open source protocol for small batch insulin production. His goal is to create a future where hospitals and pharmacies could make insulin themselves rather than relying on the current companies who manufacture it.

We think that if there were thousands of manufacturers instead of just three then it would be much easier to get. You would reach many more people who need it and the price would be much lower. Unfortunately, the high price of insulin in the U.S. has led some diabetics to buy it from other countries, off the black market or in extreme cases rationing their doses. In order for him to keep his same physicians and same network of Pharmacy and doctors, the plan was going to cost $450 a month with a $7,600 deductible. Nicole Smith-Holt lost her son Alec after he started rationing his insulin. He had just turned 26 and couldn’t be on her insurance anymore. His insulin costs were more than a $1,000 a month. He died of diabetic ketoacidosis because he couldn’t afford the amount of insulin that he needed. I think ultimately the responsibility lies on the insurance companies. The pricing has gotten to be so expensive, so unaffordable for all diabetics. You know I don’t think they ever realized that so many people would be paying out of pocket or to be on such high-deductible plans that they would be paying list price.

The whole supply chain and the insurance companies actually are responsible at this point. But the reason why insulin is priced so high is complicated. It involves negotiations between manufacturers, pharmacies, insurance companies and middlemen. Even lawmakers are trying to figure out who to blame for the high price. The price of insulin has tripled during the last decade. 50, 60 years or more with the production of insulin by pharmaceutical companies and we have no generics. Before insulin was discovered diabetes was a death sentence. Patients typically died within weeks or months after diagnosis but in 1921 insulin was discovered by Sir Frederick Banting. The first versions of it were extracted from animals and it took two tons of pig pancreas is to make just eight ounces of insulin.

Ironically, Banting sold the patent rights to the University of Toronto for just one dollar in an effort to make insulin easily available to those who needed it. In the 1970s researchers discovered a way to synthesize human insulin in a lab which turned out to be more effective than animal insulin. Since then insulin makers have continued to innovate and with each new form of insulin they get faster and better than the previous versions. Making the older ones obsolete and patent protections have hindered others from entering the market.

The insulin process is very complex and rigorous process that involves nearly 5,000 people across the globe. From the start of fermentation until we get to the final delivery system it takes several months. U.S. pharmaceutical company Eli Lilly was the first to commercially produce insulin in the 1920s and is one of the companies heavily criticized for the price increase in insulin. But many of its older insulin formulations have not been patent protected for several years and yet there are still no generic, cheaper forms of them available on the market. In a statement Lilly said there aren’t many insulin manufacturers because discovering developing and manufacturing insulin is scientifically and technically very precise, difficult and requires billions of dollars in long-term investments.

Companies have to make a long-term commitment to be in this industry. Not many are able or willing to do so. But Open Insulin disagrees. By doing it in the way that we’re doing it, we should be able to reach similar cost of manufacturer to what others who’ve been working in industrial settings have obtained, which is somewhere between $5 to $15 a vial. Right now we are just finishing work on making a slow-acting insulin and we’re starting to try to figure out how to add a fast-acting insulin to the portfolio of things that we’re developing.

Open Insulin is in the process of testing its long-acting insulin. But after that comes a long road of legal and regulatory hurdles. It hopes by proving it can make insulin at such a small scale it could eventually increase more competition and cheaper more accessible insulin. In the meantime, insulin continues to be very expensive. Insulin manufacturers have started offering assistance programs and there are global campaigns by organizations such as T1 International and JDRF who are working to make insulin more affordable.

You know these situations are really tragic that people would have problems accessing insulin, which is necessary for people with Type 1 diabetes to stay alive. So we need companies, we need the federal government, we need employers, we need health plans, we need everybody to do their part in order to make insulin more affordable. We need people to stay healthy until there’s a cure and affordable insulin is a really important part of that..

As found on Youtube