NYC/Brooklyn: Forming In-Person Community Action Group

I would like to form a legal and social action group for people with diabetes in the New York City area, and I’m seeking other people based in the area who want to organize with me. This would not be a diabetes support group, but rather a group aimed at planning sustainable, targeted actions that can effect change for diabetes healthcare.

Personally, I am angry about the continuing changes that UnitedHealthcare is making to my coverage. For example, they only cover Medtronic pumps as of July 2016. And, they sent me a letter dated 12/14/16, noting that I would have to switch from Novolog to Humalog as of 1/1/17 - only two weeks notice over the winter holidays. My endo let me know that many of her patients were experiencing similar changes. My monthly insulin costs, per insulin, went from $15/month 8 years ago to $35/month per insulin today.

I think that changes like this will continue, and one way to protect ourselves and other diabetics from harmful policies and drug price increases is to meet and discuss our visions for change.

I have tried to find other community action groups for diabetics. JDRF offers meet and greets, and ADA offers legal protection against discrimination against diabetics. There don’t seem to be any community organized groups in this area focused on identifying and changing healthcare policies harmful to diabetics.

I’m interested in hearing if anyone has the same frustrations or interest in forming a group like this. I live in Brooklyn but am happy to travel to other boroughs. Feel free to contact me!

T1D - 8.5 years


Michael Moore is organizing a mass protest against Trump on Thursday, January 20th outside the Trump Hotel, not trump tower, trump hotel on 61st street at 6 PM. If you attend the protest you will likely meet thousands of groups protesting cancelation of Affordable Care Act. Also go to and you can put in your zip code and hook up with many groups already started or register to start your own. Increased cost of insulin is the least of our problems. There will be huge increases in deductables, loss of coverage for preexisting conditions, possible privatization of Medicare for seniors, loss of coverage for young adults of 19 to 26 years coverage under their parent’s plans. Costs to insure Type 1s who do not have insurance through their jobs through high risk pools has been done before. And it’s not a solution. It’s a catastrophe. Thank you for stepping up to the plate. We as a society are going to have to fight like we never have before to get universal health care at affordable rates. I do not know if we will ever see less than a $35 dollar copay for a drug unless we can also negotiate with the pharma companies for pricing of drugs as most other countries do. Which is part of the fight against big pharma lobbyists.

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Hi Julia,

Thanks for mentioning some of the protests occurring -
but I’m not looking to form any mass actions right now.

Right now - I’m mostly just looking to talk to other diabetics who may want to address issues relevant to us in an organized, sustainable way.

Wishing you the best of luck. We are not in NYC - but I figure that a reflection group discussing what better ways there are cannot be bad. Hope you can find people interested.

Hi @Erin_Carr! Thanks for posting this message here! I am happy to see others looking to take action. Personally, with all the political shifts happening right now, sometimes it feels like scrolling through Facebook, news, etc. is just people complaining, and for a very action-oriented person that can feel stuck to me.

I work at Diabetes Hands Foundation, but I’m also a type 1 and advocate myself. I’m not in NYC, but would you consider some virtual meetings via google hangouts? I’d be interested, and also have someone else that contacted me about a meetup (I’m not sure where he lives). Or, I know a few T1s within the T1D area, maybe we could reach out to them and see if they have any leads. I’m interested in experimenting with ways to successfully organize within our community, I think small groups like this that take on a project would be really neat.

*within the NYC area

Thats nothing. You are doing a lot better than most of the folks.

@TypeJones, a virtual meetup sounds great! And, if you know anyone else in my area who’s looking to organize, I’d be happy to meet up with them for coffee.

After voicing many of my frustrations to my doctor, she told me that a lot of her patients are feeling the same way-that she’s seen diabetic healthcare made worse by insurance companies and pharmaceutical companies over the time she’s been practicing. Knowing that other people feel the same means we can do something about it together!

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Well, that doesn’t include test strips, pen needles, continuous glucose monitor supplies…and so on.

I’ve been trying to switch to a pump but it’ll cost so much more than staying on injections even though it’ll be better for my blood sugars.

Honestly, the financial burden of this disease (and other chronic illnesses) is unjust. I get frustrated that I can’t switch to a pump for financial reasons, but I know there are people who can’t even afford injections.

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COUNT ME IN. I am a Brooklyn gal. I would like to put our heads together and meet for coffee. Yes, I agree that people who have diabetes are getting thrown under the bus. The companies sell insulin pumps that are expensive and the supplies are even more costly. You must use Bayer Contour test strips ONLY. These are twice as costly! The machine continues to tell you to do BG…all day and all night long. STRESS IS KILLING PEOPLE WHO HAVE DIABETES. We release stored sugar. IT IS NOT WHAT WE ARE EATING, BUT WHAT IS EATING US.