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