Roosevelt Institute | Cornell University

The Costs of Patient-Led Initiatives on Diabetes Care

By Andjela CirkoPublished April 3, 2016

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Patients are taking more control over their diabetes care, creating new technologies and and even trying to make insulin at home. What does this mean for their privacy and the quality of their healthcare?
By Andjela Cirko, 04/03/16

According to the Centers for Disease Control, 29 million adults in the U.S. are living with diabetes. Over the past few years, those with diabetes and their families have taken a much more hands-on approach to combating the illness. Whether it be creating apps to track their children's blood glucose levels, or leading at home projects to make insulin, diabetics and their families are taking a much more direct approach to their care.
 
Take Mr. John Costik, for example. His son has Type 1 diabetes and wears a Dexcom G4 skin continuous glucose monitor, which has a sensor that records an exact blood glucose reading at five minute intervals throughout the day, 24 hours a day, 7 days a week. This would be great, except Mr. Costik's son is at school most of the day, so his father can't keep track of his son's diabetic emergencies.
 
What Mr. Costik did to solve this issue paved the way for patient-led initiatives on diabetes care. He created a program that would transmit the data from his son's Dexcom to an online "cloud" and spreadsheet he could view from home. He got in touch with an engineer in California and created an open source system. Called CGM in the cloud, it allows users to access the data from their childrens' monitors while they're in another room or even another country.
 
It doesn't stop there. These projects have caused a patient led initiative to make diabetes care not only simpler, but more affordable. A 3-month supply of insulin can cost hundreds of dollars, even with insurance. Manufacturers of insulin are continuously making improvements on earlier versions of the hormone and will producing older forms once they lose patent protection. For patients, this means paying a higher price for the patented insulin.
 
Anthony Di Franco has started The Open Insulin Project, with which he is trying to prove that insulin can be home brewed on a small sale. His goal is to demonstrate the technological feasibility of making insulin at home, so he can get it to a generics manufacturer and lower the cost. His team of biohackers is attempting to recreate an older version of the product to address the lack of generic insulin.
 
These patient-led initiatives on their own healthcare are great, but we must ask ourselves- what are the costs? By having everything go to a "cloud," data privacy related issues can easily emerge and hackers can gain access to private patient information. And what does it mean for patients' well- being if the biohackers working for Di Franco are attempting to resurrect an older product? Clearly, newer products and forms of the agent are being produced because they are improved versions. Are patient led initiatives going to be getting people the best care they can get? Is their health information safe? These are all questions we must keep in mind when thinking about these new and emerging patient-led initiatives.