It’s nearly 2019, and people with Type 1 diabetes are dying from diabetic ketoacidosis. Akin to an 1800s time-warp, Americans with Type 1 are losing their lives for the same reasons they did back then: They lack a treatment. Of course, there is insulin now, but many have little access due to the manufacturers’ exorbitant price hikes.
From 1996 to today, virtually unchanged analog insulins have increased in cost from $21 per vial to $300 per vial and higher, for reasons that can only be attributed to greed. A month’s worth of insulin and supplies for the uninsured or underinsured can easily reach — or surpass — the cost of a monthly mortgage. There is no generic analog insulin equivalent, but instead mainly the relentless focus and pursuit of patent-extending delivery methods that are then being trumpeted disingenuously by the manufacturers as much needed innovation to serve patients.
Discovered in 1921 by Frederick Banting, Charles Best, James Collip and John Macleod, insulin remains the treatment for Type 1 diabetes. Regular injections are required to provide the essential hormone that a nonfunctioning pancreas can’t make. We all need insulin to get glucose into our cells — provided either by a working pancreas or by injection. It’s that simple. But the US government has done nothing to stop the price-gouging.
Paradoxically, while many folks with Type 1 diabetes are rationing to afford analog insulins, they are also volunteering their wearable insulin pump data to software companies, such as Tidepool, for example, who then sell that data to manufacturers for research and innovation.
Tidepool, an open-source, nonprofit organization, has created a free app for the diabetes community that aggregates patients’ actionable data in real time, which includes detailed data visualization — all to more easily track and manage one’s diabetes. People who use the app can share their data with their doctors, other researchers or anyone of their choosing. No doubt a useful tool, Tidepool states that 10 percent of its proceeds go to nonprofit altruistic projects that serve the diabetes community.
In May of 2017, Tidepool created the Big Data Donation Project in response to the request of device makers, researchers and innovators who intimated that they were “getting slowed down and sometimes stuck due to a lack of real-world data.” Tidepool further explains on their website that “innovators have told us that using real-world data sets will help them innovate faster.” In short, Tidepool predicts that patients’ donated data to their big data project will lead researchers to key discoveries and insights into diabetes management. Discussion of discoveries and insights that would lead to affordable analog insulin prices is conspicuously absent.
Moreover, in February of this year, Tidepool entered into a partnership with insulin manufacturer Eli Lilly and specifically the Lilly Cambridge Innovation Center, which is developing “new and novel insulin delivery products.” Eli Lilly can access Tidepool’s Big Data Donation Project for a fee. Tidepool, though, states that they did not enter into the partnership lightly and are keenly aware of Lilly’s pricing issues and “have engaged deeply with Eli Lilly on this topic.”
Tidepool makes money selling patients’ donated data. They encourage people to donate and perhaps convince many that donating their real-time data for innovation is a high priority. Simultaneously, they state that, “Our commitment is, first and foremost, to the diabetes community.” The Type 1 diabetes community’s primary need is access to affordable analog insulins; it is not innovation. There exists a glaring cognitive dissonance surrounding the absurd promotion of innovation acceleration when so many are currently priced out of the very basics needed for survival.
Given their partnership — coupled with their statements of commitment to the diabetes community — Tidepool has a responsibility to compel Eli Lilly to lower their prices. Americans with insulin-dependent diabetes need affordable analog insulins first and foremost. If the Tidepool/Eli Lilly partnership continues without any insulin price corrections, patients should simply choose to no longer donate their data.
Tidepool states that the system is broken, but that they don’t think it is entirely Eli Lilly’s fault. Analog insulin costs between $3.69 and $6.16 a vial to make; it sells for more than 80 times that in the US, at $300 per vial and more.
In the reckless pursuit of unreasonable profits, the blame for unaffordable insulin absolutely rests with all the insulin manufacturers — of which Eli Lilly is one — and, based on history and the current Tidepool partnership, perhaps the one with the greatest obligation to drop their price. A hefty share of the blame can also be placed on insurance companies and pharmacy benefit managers who work in tandem to keep prices high, while reaping the financial reward of manufacturers’ lucrative rebates that are never passed down to benefit patients.
In 1923, the discoverers of insulin — Banting, Best, Collip and Macleod — sold the patent for $1 as a “gift to mankind” to the University of Toronto, which in turn gave the rights to Eli Lilly to mass produce, safely and affordably, for all. They’ve been successful with mass production and safety — but Eli Lilly’s unethical prices are killing people and, so far, Tidepool is complicit in that.