Who will profit from the cure for Type 1 diabetes?


Author’s note: Opinions expressed in this editorial piece are my own. This is written and shared as a member of the type 1 diabetes community, not in any official capacity related to my position at Beyond Type 1. Read the news announcement on this partnership here.

Today, Eli Lilly and Company announced a large investment in a small cell-encapsulation research company called Sigilon Therapeutics. Today, I realized something I’d never before considered: the same company profiting from the insulin people with type 1 diabetes must take to stay alive may be the gatekeeper of a one-day cure.

I received the press release announcement in my email inbox. As the communications manager at Beyond Type 1, I often help cover industry news announcements. Sometimes that’s straightforward. This week it wasn’t.

I’ve lived with type 1 diabetes for 16 years—I just celebrated my diaversary this weekend. My dad has type 1. My maternal grandfather also has type 1. I have taken insulin via injection or infusion now for 5,842 days. Averaging about 60 units a day, that’s about $100,000 worth of insulin (at the current list price) just to make it to 24 years old. Because I’ve enjoyed the privilege of health insurance, the bulk of this money hasn’t typically come directly out of my family’s pockets. But for millions of uninsured or underinsured Americans, it does.

Lilly, one of the “big 3” insulin manufacturers alongside Sanofi and Novo Nordisk, has increased the list price of insulin over 1,123 percent since 1996. Last year, the list price for Lilly’s popular fast-acting insulin Humalog was raised to $275.58 per bottleup another 7.8 percent.

To add insult to injury, these increases have occurred in lock-step between the three companies—prompting multiple class action lawsuits. Insulin manufacturers have publicly blamed pharmacy benefit managers (PBMs) and health insurers for rising costs. Yes, the system’s totally broken. Killing people, actually. And no, it’s not just the manufacturers, but pointing fingers will not excuse them from their share of the blame. The CEO of Lilly made $14.4 million last year. It was his first year on the job.

Because of the skyrocketing and prohibitively expensive price of insulin, I live in fear of finding myself without work that includes health insurance benefits. Changing insurance plans is a nightmare. The politics around pre-existing conditions are terrifyingly personal. I still know I’m lucky.

Because of my work at Beyond Type 1, I’m all too aware of people in our community who are struggling to afford insulin. Of people who have died because they do not have access to a drug that has been around for almost 100 years. These stories break my heart and make me so angry. And scared. There is nothing that separates me or my dad or my grandfather from the more extreme cases in our community except that we happen to have access to affordable insulin today.

So covering that press release announcing Lilly’s new investment in the cure space? Not simple. My response to the press release was exceptionally emotional. You know, like ugly-crying in the office after realizing the role Lilly might play in my future.

I have questions. Like—why is Lilly investing in technology that could hypothetically eliminate the need for one of their most popular drugs? Is Lilly putting a stake in the ground—marking the beginning of its claim to a corner of the future cure market? Perhaps this is an attempt to position themselves as an ally working on a cure for type 1 diabetes rather than a company profiting from a life-sustaining medication many with diabetes struggle to afford? Worse, even —is this Lilly investing in cure research as a first step to killing this technology?

I am angry and I am confused because today I learned a difficult truth about the nature of our healthcare system and the pharmaceutical industry. And that is this:

There’s a significant chance that the very same companies profiting from the drug we take to stay alive will own (and profit from) the future cure for type 1 diabetes.

Of course I knew that someone would own and profit from implantable cell therapies—but never did I consider that it would be Lilly. Or Novo Nordisk. Or Sanofi. I don’t know why I didn’t consider it, I just didn’t. I guess I’m naive. A biology major who did lab work at my University, I pictured scientists at the bench, driven by a desire to help people and by a love for scientific discovery. I pictured Frederick Banting and his colleagues selling the patent for insulin for $1 each.

The press release from Lilly announcing their “exclusive worldwide license” to the cell encapsulation technology for islet cell transplantation burst my idyllic bubble. The cure will not be a magic solution that makes type 1 diabetes disappear forever. And it will not be attributed to the humble scientist in a lab altruistically saving lives. The cure will have a pharmaceutical company’s name on it. The cure will make that company money.

Industry players like Lilly will be the ones to facilitate a cure because they’re the companies with enough money fuel the years-long intensive research, development and go-to-market preparation it will require. These companies have the money because that’s what they do—make money. By charging prohibitively expensive prices for drugs from the same people who may one day stand to benefit. Maybe. If we’re lucky.

Which leads me to one last line of questioning: when there is a cure, who will have access to it? How much will it cost? Will health insurance cover it? What if I can’t afford health insurance? What if, when a cure is finally a reality, people in the United States with pre-existing conditions no longer have access to affordable health insurance? And exactly how much money will the executives at that pharmaceutical company make?

Because of my work at Beyond Type 1, not only do I know people whose lives are impacted by the cost of insulin … I also know people who work at Lilly. I know that they are kind, good people and that many of them are also personally impacted by type 1 diabetes. They are probably hoping that this is a genuine investment by their employer to bring a real, functional cure for type 1 diabetes to as many people as possible.

I am hoping the same thing. But today I’m finding it difficult to feel optimistic.

Read the news piece on Lilly investing in cell encapsulation technology.

WRITTEN BY Dana Howe, POSTED 04/04/18, UPDATED 10/24/22

Dana was diagnosed with type 1 in 2002 at the age of 8. Driven by her type 1 diabetes (T1D), Dana studied Biology and Community Health as an undergraduate and went on to complete an MS in Health Communication from Tufts University. In the past, Dana has worked as a communications specialist with major hospitals as well as small nonprofits on topics ranging from cancer to pediatric device innovation. At Beyond Type 1, Dana strives to use social and digital media to amplify community voices and inspire everyone to #LiveBeyond.