I am writing to let you know that I have thought long and hard after our Zoom call last month, and I have made the decision to resign from the Beyond Type 1 Leadership Council. This has been a really difficult decision for me to make, as I consider everyone on staff a close friend, especially yourselves.
When I first got involved with Beyond Type 1 in 2015, I did so because I had grown disenchanted with other diabetes organizations. They claimed to fight for us, yet took money from the very pharmaceutical companies we were supposedly aiming to put out of business once a cure was found. I loved Beyond Type 1 because of the fresh approach to advocacy, innovative energy, and your promise to never take insulin money for the obvious conflict-of-interest reasons.
As for transparency, I appreciate the updated Funding Model page on the Beyond Type 1 website. However, it should have been thought of the moment the possibility of taking insulin money was even on the table--not as an afterthought over a year and a half after insulin money was accepted. You knew better than that. Transparency should be expected, not applauded. Furthermore, it was hurtful that I did not hear about the Lilly money directly from Beyond Type 1, but rather from concerned members of the diabetes community approaching me as a member of the Leadership Council via social media. The belated Funding Model page isn't transparency. It is damage control.
I have heard over and over again as a member of the Leadership Council that my voice is valued. However, I used my voice to ask for serious consideration of the criticisms raised by the diabetes community surrounding your decision to accept insulin funding. I asked you to stop taking money from insulin manufacturers. I did not ask, and should not have needed to ask, for transparency. That should have been a given. I have not seen any indication that you are listening to me about reconsidering your Lilly partnership. Being transparent about that relationship is an improvement, but not enough.
Diabetics are dying in the United States of America due to insulin rationing because the companies that you are choosing to partner with are gouging the prices to the point that only the most privileged of Americans can afford their insulin without stress. The fight for affordable and accessible insulin should be your #1 priority. In spite of your insistence to the contrary, I do not believe that it is possible to prioritize this fight while accepting a single penny from Eli Lilly.
Beyond Type 1 has a special place in my heart. When we love something or someone, I believe we have a responsibility to hold them accountable with the hope that they will use that criticism to change, grow, and become the best version of themselves. I believed you when you said my voice was valuable, and had hope that you would listen and make genuine changes. Unfortunately, I have seen excuses and attempts at justification, not change. For that reason, I feel that I must make it publicly clear that I have unsuccessfully attempted to use my voice from the inside, but now must step away.
Everyone on both the staff and the council have a special place in my heart, and I wish to leave you on amicable terms. I sincerely hope that you will still reconsider your stance on allowing insulin money to compromise your mission. Until then, goodbye and thank you for letting me serve the diabetes community alongside you the past 5 years.
27 AUG 2020
After 5 years of working alongside Beyond Type 1, I have made the decision to step down from the Leadership Council. It was brought to my attention a few months ago that the organization was receiving funding from Eli Lilly, one of the big insulin companies responsible for outrageous insulin price gouging in the United States, leading to our current insulin rationing crisis. I was especially hurt because I did not learn this from Beyond Type 1 directly, in spite of being on the Leadership Council. Instead, I found out from concerned members of the diabetes community a year and a half after insulin money started being accepted. Beyond Type 1 did not even disclose this relationship on their website until a couple weeks ago.
I firmly believe that as long as Americans are dying from insulin rationing, speaking up about access to affordable insulin should be a top priority of every diabetes non-profit. Accepting donations of any size from Eli Lilly, Novo Nordisk, or Sanofi compromises an organization's ability to do this.
BETA CELL #31: GETTING LOUDER
When Sierra Sandison was diagnosed with type 1 diabetes in rural Idaho, she didn’t have anyone to talk to. Now that she does, she’s making sure she’s heard.
My message to the diabetes community is this:
We need to keep our diabetes organizations accountable. Beyond Type 1 has done a lot of good. So have other diabetes organizations who have been accepting insulin money long before Beyond Type 1 even existed. I am not denying the positive impact they have had on the community, and especially the influence they have had in my own life and diabetes journey. However, their decision have insulin companies as significant donors is causing more harm than good.
Pay attention. What does it mean when an organization claims to fight for a "cure"? Do they mean better (but expensive and difficult to access) tech? Or are they truly allocating funding towards a biological cure that will allow us to someday produce our own insulin again? A cure is not a cure if it means we continue to go to the pharmacy every month and pay hundred of dollars just to stay alive.
Pay attention to their messaging. Why are they largely silent when PhRMA files lawsuits against insulin pricing legislation? Why did they promote one company's insulin coupon, and not say a word about the other? How do their sponsors affect their "news" coverage?
Don't buy their excuses for accepting insulin money, no matter how cleverly worded the reasons may be. There is a reason Lilly and Novo make donations to diabetes organizations, and it is not out of the kindness of their hearts.
These non-profits are important. They have the power to do a lot of good for the diabetes community, which is why we need to keep them accountable and make sure they fight for us.
Listen to the latest episode of the Beta Cell Podcast, where Craig and I discuss my decision to step down, the behind-the-scenes details leading up to it, and why insulin funding in non-profits is such a big deal: