Nick Jonas appeared on the Today Show last Tuesday to announce that Dexcom and Beyond Type 1, the diabetes nonprofit he co-founded, “are committing $1MM to access and programs to continue the conversation around health equity.” Jonas will be featured in a $7MM Super Bowl LVII ad for the recently FDA approved Dexcom G7 Continuous Glucose Monitor (CGM.)
While Jonas has been filming commercials, receiving a Walk of Fame star, and announcing his forthcoming album, working-class diabetics are desperately attempting to keep each other alive through vast underground supply sharing networks—facilitated in part by our volunteer group: Mutual Aid Diabetes.
This will be Jonas’ second Super Bowl appearance with Dexcom. In 2021 their ad received criticism for the line, “Drones deliver packages, and people with diabetes are still pricking their fingers?” CGMs are highly sought after, but unaffordable. Dave Holmes wrote in Esquire, “While Jonas makes it look fun and easy to use a Dexcom G6—a program to just get with like you would a drone or LED eyelashes—the process of acquiring one is complicated and often very expensive, even for people with good insurance.”
After being diagnosed in 2003, I didn’t have access to a CGM or insulin pump until late 2020. While I was on multiple daily injections (MDI) of insulin and “pricking [my] finger” only 5 times a day, it was impossible to control my blood sugar. Once I obtained a CGM and pump thanks to Medicaid, my a1c dropped significantly to a nearly perfect 6.3%. Unfortunately many patients in the US aren’t as lucky as I am.
Dedicating $1MM to “continue [a] conversation” about CGM access comes across as craven when insurance is tied to employment, politicians have yet to propose a universal insulin price cap, diabetics are dying from rationing their life-sustaining synthetic hormone, and they can’t afford basic blood sugar testing supplies.
In 2020 MAD was founded, primarily to address the need for insulin access, because none of the four major national diabetes nonprofits provide direct funding to cover costs associated with diabetes for patients. We frequently receive requests for “old fashioned” glucose monitors and test strips, because the patients we assist struggle to afford those. According to Healthline, “27% of diabetes-related expenses at pharmacies are for self-monitoring blood sugar.” Additionally, a 2018 T1International survey found that 38% of diabetics in the US have rationed blood sugar testing supplies.
Our requests for Dexcom G6 sensors and transmitters are almost always greater in number than the supply donations our community partners have. Because the cost of Dexcom supplies is so high we typically aren’t able to distribute direct funding for them due to our incredibly limited resources.
The three main insulin manufacturers—Eli Lilly, Novo Nordisk, and Sanofi—provide funding to the American Diabetes Association, JDRF, and Jonas’ organization Beyond Type 1. MAD partnered with Human Rights Watch on their 2022 US insulin pricing report, which recommended that insulin manufacturers, “Ensure drug prices are affordable for the most economically vulnerable, such as by lowering list prices to levels that are affordable, including for people without insurance or with inadequate insurance, who are much more likely to be from marginalized communities and working low-income jobs.”
HRW further suggested these companies, “Conduct human rights due diligence to identify and rectify unfair business practices that cause or contribute to the human rights risks of insulin rationing and the two-tiered system of insulin access.” Yet Jonas’ nonprofit Beyond Type 1, which initially refused funding from insulin manufacturers, has shifted and now partners with these very organizations.
In 2021 Maine was attempting to pass an emergency insulin law similar to Minnesota’s Alec Smith Insulin Affordability Act, which even at the time had already saved 465 lives. Annalisa Van Den Bergh and Robin Cressman reported for Jacobin, “Along with Eli Lilly, [Beyond Type 1] quietly submitted testimony opposing a bill that would allow patients in Maine to receive an annual, guaranteed thirty-day emergency supply of insulin, claiming the bill would duplicate Getinsulin.org.”
Thankfully, Maine’s emergency insulin supply legislation passed despite Eli Lilly and Beyond Type 1’s attempts to stifle it. Beyond Type 1 purports that their website GetInsulin.org is a solution to unaffordable insulin. However when I enter my insurance information, the “Action Plan” their aesthetically overwhelming and faulty pharmaceutical funded online tool suggests is a Novo Nordisk patient assistance program (PAP) that I specifically do not qualify for because I’m on Medicaid. How can we possibly trust that Beyond Type 1 will use this $1MM in a way that would substantially help the community when their track-record shows otherwise?
Conversely when a patient requests help from MAD to obtain insulin, medication, and supplies, a diabetic volunteer will evaluate all PAPs and coupons on behalf of the community member, and inform them if they qualify for one. Often the most cost effective solution for MAD is to connect patients with others in their area who have surplus insulin to share, rather than distributing $35 to cover the cost of picking up an insulin prescription with a coupon.
While coupons and PAPs work for some patients in some instances, they do not solve the problem of exorbitant insulin prices. The fine-print terms and conditions are highly confusing to the average person, making them nearly impossible to navigate while rationing insulin, which impacts a person’s ability to process information and impairs vision. Furthermore, the insulin manufacturers who offer these programs can change their terms and conditions, or retract the discounts all together, at any point. Will the $1MM be used to expand GetInsulin.org to include more means-tested manufacturer programs, this time for Dexcom supplies?
According to Human Rights Watch, “We wrote letters to [Eli Lilly, Novo Nordisk, and Sanofi] requesting information on, among other things, data relating to patient assistance requests, including the total number and kinds of applications received, accepted, and denied as well as their methodology in determining such eligibility. While these manufacturers provided some data and highlighted several supportive programs… the information they provided was insufficient to determine how many people’s medicine is made affordable through assistance provided by these programs in any given year.” The manufacturers aren’t even willing to disclose how many patients are helped by their programs they claim are solutions.
In an interview with USA Today, Jonas said, “I was thrilled when I first saw the creative for this commercial. I’ve always been a big fan of magic… I’ve always tried to poke holes in tricks when I see them.” To me it’s clear that Beyond Type 1 and Jonas’ diabetes “advocacy” is the definition of a cheap trick—one that many diabetics figured out long ago.
Zoe Witt is a lead organizer with MAD, and a freelance writer based in Seattle. Their work has appeared in The LA Times, Teen Vogue, Jezebel, Glamour, and SELF.