why diabetes orgs don’t represent me, a people with diabetes: a THREAD BABY!

right now the biggest issue affecting our community is access to insulin. no insulin = rationing = death. this is the issue my advocacy work addresses. it is multilayered. 1/

there are two types of action my advocacy work takes: supplemental and transformational. supplemental is the stuff that stops people with diabetes from dying within the current system 2/

which is your community (“black market”) insulin sourcing, assistance with navigating PAPs, 340B, and local insurance options, fundraising money to buy insulin/pay for copays & premiums, educating & providing resources to communities, etc 3/

transformative change is where we’re trying to make the system into one where we wouldn’t *have* to do the supplemental work to begin with. this is working with our legislators, advocating for laws, educating allys, etc 4/

the biggest issue with commercial diabetes orgs is that they only focus on “transformative” change and ignore the current issue of literally keeping people with diabetes alive. none of the three websites have an explicit “click here if you can’t afford your supplies” option 5/

AND their take on transformative change (except for the ADA) is to advocate for better technology to *manage* diabetes (don’t forget all the times JDRF promised you they were making a cure). these orgs lobby for money to feed into the diabetes market, not change. 6/

which in turn perpetuates the cycle of funding and developing new diabetes tech -> commercial success & market demand -> reflection in pricing -> inaccessibility (we saw JDRF do this with dexcom) 7/

and let us not forget these orgs are funded by the insulin manufacturers, so as long as that money keeps coming in, the org will continue to work for the best interest of their funders, who are the people who have the most to gain with the development of a new diabetes product 8/

not only are their research endeavors and lobbying efforts affected by this influence, but so are their org images and the narratives they distribute to their audiences. 9/

“diabetes doesn’t stop me from doing anything” is a GREAT way to subconsciously shame folks who can’t afford to do diabetes, which shifts the blame from the system to the individual and take the focus off the root of the problem which is of course the insulin manufacturers 10/

(and this is the rhetoric that is thrown at families as early as diagnosis. new parents of T1Ds who don’t know any better are relieved to see someone who “gets it” and turns to them for a sense of normalcy through “community” and “support”) 11/

so not only are the orgs not helping, but when you analyze what they’re actually doing, it seems almost insidious. tell sick people they are unstoppable, take their money, and then make it so they can’t even access what their money funded. 12/

so yes, there may be a huge network behind these orgs but I guess this is an intention & transparency issue. unless the orgs start fighting for change in a way that makes sense and/or doing the ground work of actually helping individuals, I don’t see how they stand for me. 13/13