The major diabetes organizations do not represent many of us with diabetes, despite their missions suggesting otherwise (1​, 2). JDRF and the American Diabetes Association (ADA) set the vision for what living with diabetes looks like in this country. They conduct extensive government lobbying, have symbiotic relationships with insulin and device companies, and employ large-scale, public-facing marketing campaigns. When friends and family or members of Congress think of diabetes, they think of JDRF and ADA and assume these organizations are doing all that they can to represent Americans with diabetes.

In reality, JDRF and ADA are hindering any chance of us surviving with diabetes in the United States.  Read our testimonials below on why JDRF and ADA do not represent us, a group of unaffiliated patient advocates with diabetes. If you too feel unrepresented by the JDRF and ADA,  sign the petition, share it widely and share your story in the comments. Let’s show JDRF and ADA that they can no longer falsely claim they represent people with diabetes in the U.S. while ignoring the diversity of our patient community and our need for affordable insulin to survive.  It’s time patients wielded our own power in the diabetes sphere.

1. JDRF and ADA do not represent our interests when they accept money from the companies that are pricing us out of our lives.

JDRF and ADA accept donations from pharmaceutical companies (1​, 2​, 3​, 4​, 5 ), and device manufacturers as well as enter into other kinds of partnerships with them (1​, 2​, 3​, 4​, 5​, 6​, 7​, 8). Some of these partnerships date back more than 50 years (1). For organizations that claim to represent people with diabetes, accepting money from organizations that are literally pricing us out of our lives is fundamentally a conflict of interest. Outrageously, insulin manufacturers have literally funded the lobbying work and Congressional presence of JDRF — which begs the question of who JDRF is really fighting for (1).

JDRF and ADA have never used their strength or countless connections with both the pharmaceutical industry and Congress, to prevent people dying from lack of affordable insulin.  JDRF and ADA have been complicit in the 1200% increase in the price of insulin in the past two decades.  In fact, despite claiming to lead the fight for affordable insulin in the United States, it was only after the insulin pricing crisis hit the front page of the Washington Post in 2016 (1), did JDRF and ADA launch initiatives involving access (1​, 2). JDRF launched an initiative called Coverage2Control in 2017 (1) and the ADA launched a petition calling for “access to affordable insulin” (1). As recently as November 16, 2016 (1) and September 20, 2016 (1), JDRF and the ADA did not have access listed as advocacy priorities.

2. The initiatives put forth by JDRF and ADA are too focused on the future and only support the privileged few.

These organizations are incredibly future-focused (1​, 2), even in their advocacy (1​, 2), and focus on achieving research milestones that are years, if not decades, away. Meanwhile, many patients feel okay with the quality of life and treatments we have now, and we see the greatest collective impact on people with diabetes by getting what we have now into everyone’s hands.

When 25% of Americans with diabetes ration insulin (1), only 60% use insulin pumps (1) and only 38% use CGMs (1), it is clear there is work that needs to happen to ensure everyone can access the insulin they need to live and that access issues aren’t preventing people with diabetes from using technology.

With how much talk and supposed work towards a cure these organizations put forth (1​, 2) it’s hard to believe that a cure will ever happen when we’ve been told that a cure is “only 5 years away” every year since insulin was invented. How will a cure, if found, be accessible to all when these organizations have never even met the low benchmark of ensuring everyone has access to insulin.

3. JDRF and ADA remain ignorant on the systemic problems that dictate our lives and are not inclusive of the patients who depend on their work.

These organizations choose to remain ignorant about many systemic issues within and outside our healthcare system, especially issues that make people with diabetes extremely vulnerable such as race and class. They are not inclusive of people of all types of diabetes who depend on the work they do and they refuse to acknowledge that people with diabetes come in all shapes and sizes. This lack of commitment towards inclusion alienates a large group of people dealing with this disease.

For many, inclusion (or lack thereof) starts with diabetes itself. Even beyond Type 1 and Type 2, there are many other types of diabetes including, but not limited to, Cystic Fibrosis-Related Diabetes (CFRD), Late Adult Onset Diabetes (LADA), Maturity Onset Diabetes of the Young (MODY), gestational diabetes, Steroid Induced Diabetes, Post-Transplant Diabetes and diabetes from injury to the pancreas. While the ADA recognizes all kinds of diabetes in some (if minor) fashion, JDRF maintains that it is a Type 1 organization (1). JDRF’s mission towards research and technology is leaving out large parts of the diabetes community — even when people with all kinds of diabetes depend on that research and technology.

These organizations also have the power to set the vision for what diabetes looks like in this country and they’ve often ignored the Black community. One example is participation in ADA’s Call to Congress (1) and JDRF’s Government Day and Children’s Congress (1​, 2). These advocacy events enable people with diabetes and their families to get much needed time in front of their Congressional representatives. Yet, these events have historically been represented mainly by white people, even from plurality Black locations such as Washington, DC.

More recently, with the country’s reckoning regarding Black Lives Matter, these organizations are still struggling to recognize their role in the systemic health disparities and medical racism faced by the Black community. JDRF’s first statement on Black Lives Matter didn’t reference Black Lives Matter or the Black community at all (1). During the weekend after Juneteenth, JDRF featured the stories of three Black women on their social media pages and refused to moderate the racist comments these women received on their platforms (1​, 2). Yet, JDRF was able to moderate comments in real time during their "Power of One" event a week after. Since then, JDRF has issued a message regarding Black Lives Matter and their commitments (1). But, why did it take the George Floyd protests and a botched social media campaign for JDRF to publicly recognize that Black people with diabetes face far more barriers to diabetes care? These instances just scratch the surface of the injustices perpetuated by the white diabetes community that these organizations set the vision for.

Finally, many initiatives put on by these organizations also center around fitness whether it’s the JDRF One Walk , ADA’s Tour de Cure, the JDRF ride or insulin manufacturer sponsored runs during big conferences (1​, 2​, 3​, 4). While fitness is a laudable priority, it's one many cannot participate in and others wonder if this is internalized ableism to fight back against public stigma (and racism & classism) towards people with type 2 diabetes. Additionally, the empowerment messaging of “we can do anything with diabetes” surrounding these events ultimately harms our community when that sentiment only applies to people with diabetes who are privileged.

4. JDRF and ADA ignore calls for change from patients while co-opting the work of grassroots activists.

While it took the work of unpaid, grassroots activists to bring insulin pricing to the public’s attention through media attention and legislation before JDRF and ADA would take the matter seriously, both organizations have a history of selectively co-opting the work of these activists.

In September 2019, three years after the front-page article on insulin prices in the Washington Post that kickstarted a media frenzy on insulin prices and subsequent federal and state legislation, representatives from the ADA, attributed that work to their “access to affordable insulin” petition (1​, 2), not the work of grassroots activists.

The ADA also has a history of taking credit when state legislation on insulin access passes (1​, 2​, 3) when grassroots activists do the work on the ground (1​, 2​, 3​, 4). But, they only selectively do this when the bill is neutral to their pharmaceutical company donors. Most telling, when the first state bill addressing insulin access and transparency was passed out of the Nevada Legislature, the ADA and JDRF remained silent (1).

When more than a dozen diabetes activists (1) were invited to the State of the Union in 2020 by their members of Congress, despite being unaffiliated with these organizations, these organizations took it upon themselves to contact these activists and give them “talking points” (1​, 2​, 3). These talking points coached ways to downplay the insulin pricing crisis and focus on the advocacy priorities of these organizations instead. Again, this wasn’t a JDRF or ADA event, JDRF and ADA did no work, many of these activists were entirely independent of these organizations and still, these organizations saw an opportunity to take advantage of the situation.

Finally, as recently as a few weeks ago, JDRF continues to use the work of grassroots activists to enrich their events. When Nicole Smith-Holt agreed to tell her story as part of JDRF’s “Power of One” event, she told her story of insulin activism and the long journey to get Alec’s bill passed in Minnesota, a bill the ADA and JDRF remained silent on. JDRF chose to censor her story and rewrite it so that it became a story of JDRF advocacy instead (1).

5. JDRF and ADA fundraise off of vulnerable patients with diabetes, who they in turn ignore.

As these organizations engage in conflicts of interest by accepting money from the companies that are pricing us out of our lives, they also expect us as individual patients and loved ones to donate and fundraise money for their causes.

JDRF enters the lives of families with newly diagnosed diabetes early, often at the initial hospitalization with their “Bag of Hope” (1). This gesture includes various toys, including Rufus or Ruby the teddy bears that are very meaningful to newly diagnosed kids. However, it’s a strategic ploy by JDRF to begin their fundraising, volunteering and PR early. Included in this “Bag of Hope” is a way to track new patients with diabetes, have their information for fundraising and get them involved early in the JDRF volunteer ecosystem. In many cases, JDRF partners with hospitals and hospitals send them your information without permission (1).

When the ADA stole credit from grassroots activists and attributed change to their “affordable access petition”, they used the same petition to harvest the contact information from people with diabetes and others to further solicit donations (1). They created a fundraising vehicle to convince people with diabetes, many struggling from insulin prices, that their donation would mean action. In reality, the ADA accepted money from the insulin manufacturers and helped create the very problem their petition called out.

In the bleak times we live in now, JDRF and ADA are using COVID-19 as a scare tactic for fundraising and insisting on a taxpayer-funded bail out (1​, 2) . Meanwhile, people with diabetes are in one of the most vulnerable positions in society right now. Because, no thanks to JDRF or ADA, our only insulin security comes from employer based health insurance, we have to continue working, even if it’s not safe and we are higher at risk for COVID-19 complications and death (1​, 2).

In the event a person with diabetes does die, from COVID-19 or otherwise, their families often include in their obituary an “in lieu of flowers” line directing donations to these organizations (1). Families make the wrong assumption that these organizations are doing all that they can for people with diabetes to thrive. From diagnosis to death, our only guarantee is being fundraising fodder for these organizations — when we should be guaranteed insulin.