“In lieu of flowers, memorial donations may be given to JDRF,” Nicole Smith-Holt wrote in the 2017 obituary for her son Alec Smith, who died at twenty-six from insulin rationing. In his memory, she went on to form a fifty-person team for a fundraising walk for the nonprofit, formerly known as the Juvenile Diabetes Research Foundation. “At the time, we were under the illusion that they actually advocated for people with diabetes,” Smith-Holt, who now works as an advocate for another group, T1International, reflected over Zoom five years later. Today, since learning more about the largest diabetes nonprofits, she says, “I would not give them a penny.”
JDRF and the American Diabetes Association (ADA) are practically synonymous with experience of the disease itself. Patients are introduced to JDRF and its mission — “Improving lives today and tomorrow by accelerating life-changing breakthroughs to cure, prevent and treat T1D [type 1 diabetes] and its complications” — as early as diagnosis. The group, which focuses on medical research, hosts summits and walks that are especially popular with children and their families looking for community.
Many of its programs are funded by corporate sponsors, including between $2 and $5 million annually from insulin manufacturers. The ADA, which describes its mission as improving the lives of those living with diabetes and educating the public, receives at least $2.5 million annually from these companies.
These nonprofits have done good. A cure, if it ever comes, will likely emerge with their funding. But a diabetes nonprofit that takes any amount of money from the insulin companies pricing us out of our lives has a fundamental conflict of interest.
The majority of the eight million Americans with insulin-dependent diabetes are facing a crisis of cost. Diabetes is the most expensive chronic illness in the United States. Today, a vial of insulin, which costs a few dollars to make, costs around $300. At a rate much higher than inflation, “the big three” insulin makers — Eli Lilly, Novo Nordisk, and Sanofi — have hiked up the price in lockstep, by more than 1000 percent over two decades. This is a hormone we must constantly administer and will die in a matter of days without.
Living with this illness is a precarious existence. As people with T1D, we have traveled to other countries to get cheaper versions of the drug and have been forced by insurance companies to use lower-quality insulin. Many people with diabetes meet in parking lots to exchange supplies or starve themselves to lower the amount of insulin they need. One in four insulin-dependent diabetics ration insulin, which can lead to complications including life-threatening diabetic ketoacidosis, blindness, amputation, and death.
In this broken system, the only players with the power to lower list prices are the insulin manufacturers who set them. Diabetes nonprofits who partner with insulin manufacturers, however, rarely call them out by name in their literature, instead focusing on next-generation insulins and other parts of the supply chain such as the pharmacy benefit manager and rebate system. But any progress in that realm would still leave behind the growing number of uninsured insulin dependents; the most vulnerable among us.
Much ink has been spilled on the influence of pharmaceutical money in politics. But the impact of partnerships between drug companies and patient advocacy organizations is often overlooked.
In 2015, for example, a Kaiser Health News database detailed how fourteen drug makers, including insulin manufacturer Eli Lilly, spent $116 million on patient advocacy groups in 2015 — nearly double what they reported spending on federal lobbying. (Indeed, the ADA was founded in 1940 using a $1,000 gift from the company.) Such nonprofits can be incredibly powerful, with patients’ stories and support lending legitimacy to their actions. Often during the policymaking process, they act as unelected, de facto representatives for people who have diabetes.
Major diabetes nonprofits have supported incremental measures but have remained silent on more meaningful reform. JDRF and ADA, for example, both supported the insulin pricing cap in the Build Back Better bill as well as the similar recently House-passed Affordable Insulin Now Act that would cap the out-of-pocket cost of insulin to $35 a month. Despite their names — and the rhetoric of President Joe Biden, who referenced pricing caps in his State of the Union address — the proposals do not cap prices but rather copays. (Copay caps tie our survival to the health care status quo because anyone is at risk of losing their insurance, allow the big three to continue to profit from $300 a vial insulin, and in our view give the false impression that the problem is being solved.)
Meanwhile, these groups stayed on the sidelines when pharmaceutical companies sued Minnesota to block the Alec Smith Insulin Affordability Act, which would have forced them to bear more costs. For Laura Marston, a now prominent #Insulin4All advocate who in 2010 was turned away from a JDRF gala after filming a testimony for the group in which her difficulties attaining insulin without insurance were censored, understanding these conflicts of interest is crucial.
“Everybody kind of is working against us,” she told us over Zoom. “All of these organizations can call up members of Congress whenever they want. Why are they [supporting] copay caps for the insured only?”
A former JDRF employee living with T1D told us in a Zoom call of the organization’s biggest perk: free insulin and supplies. “They make you comfortable enough to not care. When you’re angry, you advocate. When you’re comfortable, you don’t care.”
But as the insulin crisis wore on, she’d see friends she’d met at the grassroots level struggling to afford their insulin. In a board meeting, she says she asked why the organization was so future oriented when a quarter of Americans were rationing their insulin. Nine months later, she says, she was laid off due to “company restructuring” and lost access to her diabetes supplies. “Their slogan was ‘Improving lives and curing diabetes.’ They ruined my life.”
Smoke Screens or Survival
A similar dynamic has played out even with newer, smaller groups. In 2015, a nonprofit called Beyond Type 1 (BT1), cofounded by Nick Jonas, came along, boasting a founding principle to not take insulin money. BT1, which quickly became the largest diabetes network on social media, made diabetes cool. (We met some of our closest friends at its adult sleepaway camps.)
By January 2019, though, BT1 started partnering with Eli Lilly, and last year the nonprofit listed the big three insulin makers among its most generous donors. The group has also formed partnerships with JDRF and the ADA.
BT1 contends that such partnerships “create unique opportunities to drive change, such as the creation of GetInsulin.org.” Sponsored by the big three, GetInsulin.org is a customizable search engine for insulin manufacturers’ often convoluted patient-assistance programs — programs that the House Committee on Oversight and Reform has criticized “as smokescreens to keep drug prices high.” The website does not “drive change”; rather, it makes it easier for patients to navigate the status quo.
Last April, BT1 went a step further: along with Eli Lilly, it 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. Many activists were blocked on social media by BT1 for demanding an explanation, and only after weeks of pressure did the nonprofit change its stance. The bill passed.
Cassidy Robinson was the logistics lead for the all-T1D team that cycled across America in 2017 to raise $800,000 for BT1. A key promise she made to prospective donors was that BT1 did not take money from insulin makers. She worries that people will continue to give to the group “based on things I told them on the phone that aren’t true anymore,” she told us over Zoom. “And that kills me.”
One in two people worldwide who need insulin can’t properly access it. According to the philosophy of effective altruism, we make the greatest impact when we focus on causes that are great in scale, highly neglected, and highly solvable — which for people with diabetes, all point to insulin access.
Given the unlikelihood of an imminent victory for Medicare for All, activists’ time is best spent advocating for federal insulin price caps, investing in initiatives like Open Insulin, and getting insulin into the hands of those who need it now through mutual aid groups, hashtags, and fundraisers. The insulin crisis has laid bare that the most dire, immediate needs of the community are not being met by corporate-sponsored advocates. And when these groups hinder real efforts to improve the situation, we are left with the relentless feeling of responsibility to keep each other alive.
“That’s what makes our advocacy so powerful,” Marston told us:
It’s the rawness of our fight for survival. No one is going to do this if we don’t do it ourselves. Once you see it, you can’t unsee it. Once you feel it, you can’t unfeel it. We know when we’re being exploited. Maybe you can’t exactly put it into words, but you know it when you feel it.
Exactly a hundred years ago, fourteen-year-old, sixty-five-pound Leonard Thomson lay in a Toronto hospital bed dying from T1D when he received the world’s first injection of insulin. It saved his and hundreds of millions of other lives, including our own. Frederick Banting and his coinventors sold the patent for $1 each because, as he famously said, “Insulin does not belong to me, it belongs to the world.”
We can only hope that anyone who calls themself a diabetes advocate today would unite under his sentiment.