Letter of Resignation from Beyond Type 1 Leadership Council

Note: Beta Cell is an audio podcast and includes emotion that is not reflected in text. Transcripts are generated by human transcribers and may contain errors. Please check the corresponding audio before quoting.

To celebrate the launch of our new show, The Bolus, we're releasing some podcast versions of classic Beta Cell posts. This one originally went up on February 9th, 2021.

If you're interested in knowing more about what has happened with Beyond Type 1 before and since this, there are more podcast episodes linked in the show notes. Here we go.

February 8, 2021

Thom Scher President and CEO Beyond Type 1 1001 Laurel St. Ste B San Carlos, CA 94070

Dear Thom,

I’m writing you this letter to formally resign from the Beyond Type 1 Leadership Council.

When our small non-profit Type One Run joined Beyond Type 1, then led by your predecessor Sarah Lucas, it was joining a team that was excited to put the needs of people living with type 1 diabetes ahead of simply fundraising. At the time, Beyond Type 1’s funding model clearly stated: "To avoid a potential conflict of interest specifically around the issue of insulin pricing, Beyond Type 1 maintains an organizational policy to not accept cash contributions from insulin manufacturers Eli Lilly, Novo Nordisk and Sanofi.” This was an explicit moral stance to ensure that Beyond Type 1 would stay on the side of people living with type 1 diabetes instead of the corporations that have increased the price of insulin 1200%, causing one in four Americans living with type 1 diabetes to ration their insulin. As you know, this can lead to long term complications such as blindness, kidney failure, neuropathy, and amputation; and, in the short term, can lead to a painful death from diabetic ketoacidosis.

Despite this, under your leadership, Beyond Type 1 deviated from this straightforward and principled commitment. Instead, Beyond Type 1 scrapped its conflict of interest policy in order to accept money from Eli Lilly, Novo Nordisk, Sanofi, and Mylan (now Viatris). It is clear that Beyond Type 1 now has a conflict of interest and that you welcomed it.

Pharmaceutical corporations are not our friends. In 2020, Beyond Type 1’s four insulin manufacturer sponsors brought in, collectively, over US$24 billion in profits—more than the GDP of Iceland. They can afford to lower the list price of insulin but, instead, they make excuses. When state governments pass laws to make insulin accessible, these insulin manufacturers sue them. It is clear that these companies are loyal only to their shareholders, not Beyond Type 1 and certainly not to people living with type 1 diabetes.

While quietly discarding a keystone promise is dishonest and unprincipled, in this case it’s also much more damning: Beyond Type 1 has made it clear that it's no longer on the side of people living with type 1 diabetes. For example, Beyond Type 1’s bolstering of patient assistance programs and copay cards, which puts the burden of getting insulin on people struggling to afford it, or Beyond Type 1’s steadfast silence on the high list price of insulin. These actions misrepresent our plight to government regulators and continue to ensure we will get no reprieve. As if that wasn’t enough, Beyond Type 1 has now taken the steps to start lobbying in Florida and Kentucky, with more states on the way. I cannot imagine a more perilous conflict of interest than for an organization that is accepting money from insulin manufacturers to be actively contacting legislators and commenting on bills that could impact the price of insulin. There is no amount of good that can come from a relationship with insulin manufacturers that can overcome the damage it is doing to the type 1 diabetes community.

After I suggested that Beyond Type 1 show where its money was coming from and what it was spent on in the organization, you replied, “…the board and I have long decided not to openly publish 990s which could serve to actually minimize additional donations from major funding sources,” a clear sign that Beyond Type 1 was determined to put its financial goals ahead of transparency and public trust. Only after widespread outrage at the responses from Beyond Type 1 co-founder Sam Talbot when he was confronted about the conflict of interest did the pressure compel Beyond Type 1 to update its “Funding Model” page to acknowledge insulin manufacturer contributions. But this page is still not linked anywhere in the menus or footer of the website, hiding its conflict of interest lest someone stumble onto it.

The name “Leadership Council” implies a role for its members that manifests as outspoken, active support for an organization that is committed to listening to people with type 1 diabetes speaking on behalf of the larger community. However, instead of developing and empowering such leaders, Beyond Type 1 has made it clear it expects voiceless, automatic cheerleaders. Further, when Beyond Type 1 decided to cancel its Leadership Council meetings, it left no forum to discuss issues like this and to voice our opinions and concerns, relegating us to individual, private correspondence. Former Leadership Council member Sierra Sandison reached out to you directly about how the conflict of interest had personally affected her ability to access insulin and you dismissed her pleas. Beyond Type 1 has still not addressed this change with the Leadership Council, over two years after changing its policy. Rather, Beyond Type 1 decided to stop advocating for people living with type 1 diabetes while simultaneously dismantling the very group designed to prevent that from happening. Where I had once believed that Beyond Type 1 would listen to us, the people it invited to be on its Leadership Council, and stayed on for so long continuing to believe that this group had enormous potential to make the change you said we might, it is now clear that will never happen. Instead, Beyond Type 1 has doubled down on profiting from and lobbying for the companies that have forced me to ship my own insulin around the country to prevent my community members from dying.

The motto of Type One Run is “Leave No Ones Behind,” a phrase that should be the ethos of every organization that represents people living with type 1 diabetes. I will always treasure the friendships and memories I’ve gained from Type One Run, but it is because of my loyalty to those friends that I must resign from the Beyond Type 1 Leadership Council. While I realize that leaving a group that has been rendered entirely symbolic, is, in and of itself, symbolic, I hope that yet another resignation from someone who once believed in Beyond Type 1’s mission might cause the members and supporters of this organization to reflect on its current deadly conflict of interest. I will not be complicit in the deaths of people living with type 1 diabetes.

To be entirely frank, I’m just tired of trying to change an organization that is so entrenched in its intent on hurting me, my friends, my family members, and my community.

I look forward to the day when Beyond Type 1 returns to putting people living with type 1 diabetes first and begins the long process of rebuilding the trust it has broken.

Sincerely yours, Craig Stubing

A few postscripts for this episode.

Since sending this letter, Thom Scher passed away and there is a new CEO of Beyond Type 1. They have still not changed their stance on taking money from insulin manufacturers.

Also, I mentioned how Beyond Type 1 starting to lobby in states while taking money from insulin makers was a huge conflict of interest. And after I sent this letter, Beyond Type 1 actually try to stop an affordable insulin bill in Maine from passing. Their letter was scarily similar to the one PhRMA sent to Maine. There's a link to the podcast episode that discusses this in the show notes.

And some good news. Since this letter, Type One Run has left Beyond Type 1 and is now a program of the Beta Cell Foundation. If you're a runner or interested at all in running, there's a link to Type One Run in the show notes.