This website looks cool! Thank you for sharing! ![]()
Hum:
Join Our Community Today!
Are you ready to have your say about diabetes and get paid for it?
They claim to have existed since 2009. Some research required.
EDIT: I don’t know, there’s nothing there I can find that an AI can’t find unless I “sign up”. That said, there is a very clear accent to the site and if that is AI generated then that is certainly new; read it a bit and listen to how it sounds.
EDIT: The domain name (aka the web site) was created in 2022 (march 7 at 8pm UTC). Conceivably they might have had it before that but I don’t know how; I created jbowler.com in 1998 and my registry entry still says that.
Nothing to do with the origin of course, I was created in 1960 (well, depending on religion, 1959) and my name was created then too.
The site is sponsored by the Diabetes Patient Advocacy Coalition.
They’re a 501(c)(4) - note that the last digit is a “4”, not a “3” so we can’t make charitable contributions and they can engage in political action (aka “lobbying”). Definitely @mohe0001 's field.
The diabetespac.org was created in 2015. It would seem the DPAC is a 501(c)(4) mirror of the ADA, a 501(c)(3) organisation. I.e. they do the same thing but DPAC can lobby whereas the ADA cannot (supposedly.)
So, regardless of what anyone feels about the ADA, the DPAC is political and the ADA is not. Ho hum, maybe I’ll fill out the questionnaire; $3 of earned income, what’s not to like?
They have full time diabetes lobbyists on the hill, but I haven’t checked what they are working on lately. I’ll try to check today. I’m behind on everything. They flew me to DC to talk with members about PBM reform. I did that first through virtual meetings during covid - maybe I did that 5 years in a row.
My gut tell me that they kinda dropped the ball on PBM reform lately because their lobbyists have gotten pulled in so many different directions. For example when money for long term studies got canceled, they had go get that $ restored.
I would classify DPAC as a little “left leaning.” That’s common for patient advocacy orgs.
Historical criticisms have been that: 1.) They didn’t lend support for state copay caps (Massachusetts?); and 2.) They take $ from PhRMA. For example, they put up a bunch of anti PBM billboards around DC about this time last year. The $ to do that might have come from drugmakers. But $ has to come from somewhere. I just assume that, as a community, everyone handles the drug makers AFTER the PBMs. One dragon at a time.
They had a meeting several days ago. I didn’t attend because I drove to Madison, Wisconsin for a state hearing on PBM reform. They discussed: 1.) Federal bills to cap insulin prices; 2.) PBM rebate pass through to patients at point of sale (pharmacy counter) in KY, KS, VA, AZ, MA, SC, NY, OK, and MN; 3.) Bills to support persons w/ gestational diabetes; 4.) Comprehensive Medicaid coverage for CGM coverage; 5.) Comprehensive coverage for obesity treatment; 6.) Glucagon in schools; 7.) T1D screening; 8.) Copay caps and Pt Accumulator programs and, 9.) Regulatory changes in Dept of Education and Department of Health. DPAC Handbook
They have monthly “Brown Bag” meetings that anyone can register to attend.
They send a diabetic from almost every state to speak with federal legislative members every year. That group is called the “DPAC Champions,” and anyone can apply to fill that role. A Tu member reached out and invited me to do that prior to covid.
Here’s their music video about PBM reform for your listening pleasure.
https://www.youtube.com/watch?v=yvgg70FU1Bc I think George made it.
Bowler is correct that many of the leadership positions for DPAC are held by ex-ADA people.