That is my question and yes I tried Googling it.
If not then one needs to exist.
We, a small number of activists with no funding and little organization at all kicked the crap out of the psychiatric pharmaceutical industry.
They were a house of cards held up by a lie knocked down to size with mostly an information campaign , the chemical imbalance fraud is dead for example.
Diabetes of course is a different ball game BUT the opposing team is the same dirt bags minus the American psychiatric association.
This crap, Insulin prices, look at the branches on that thing. WTF is this ?
Henry David Thoreau — ‘There are a thousand hacking at the branches of evil to one who is striking at the root.’
The root is this is all bull and everyone hacks one branch at a time.
What ever I try to be cleaver.
How about that long ■■■ thread about forced insulin depravation in the hospital all those horror stories in this thread pasted below they make everyone one run high like it or not .
Where are all the big powerful so called advocacy organizations on that ?
The original question is still un answered, Does a diabetes advocasy organization without pharma funding or ties to the medical establishment exist?
I doubt it. If there was not a financial incentive research would not happen.
Health is a business
Over my ten years of dealing with T2 I have begun to understand that there are only two issues that I am concerned with. 1. Am I well controlled and healthy as I can be.
2. Is there a way I can make life better for other T2’s/
I do feel I have some control over item 1. Item 2 not so much.
Just a reminder I am on diet and exercise only no medications. And well controlled.
Most likely because my first doctor admitted she did no know a lot about T2, and what she did know about available medicine was not good. So she directed me to try diet and exercise.
It is still working.
Although time for another A1c test. Hopefully won’t break my record of 8 plus years under 6.0 Started at 12.0
I guess it depends on how you interpret who resides in the “medical establishment.” I do think advocacy organizations exist that primarily support and honor the needs of the diabetes patient community.
One such organization is the non-profit, Tidepool. Tidepool’s mission, taken from their website:
Our mission is to make diabetes data more accessible, actionable, and meaningful for people with diabetes, their care teams, and researchers.
Tidepool definitely focuses on the interests of the people with diabetes.
Our commitment is, first and foremost, to the diabetes community
Many of us live with or care for someone with diabetes, and all of us are passionate advocates. We believe that together, our data is stronger and more meaningful. We’re working to empower the next generation of diabetes innovation.
A little more about Tidepool.
Tidepool is a 501©3 nonprofit organization committed to providing free software for the diabetes community to get the most out of their diabetes devices.
Tidepool Loop is hybrid closed loop system for your iPhone and Apple Watch currently in development by Tidepool. Based on the do-it-yourself Loop app, Tidepool Loop will be FDA-reviewed and officially supported by Tidepool. It will work with commercially available insulin pumps and CGMs.
I see Tidepool as firmly in the camp of people/organizations who put the patient first. I get your skepticism and I feel let down by some “advocacy” organizations who have aligned themselves with Big Pharma and Big Food at the expense of the patient. Tidepool’s heart, action, and integrity make it an exception in my mind.
I am participating in a year-long study conducted by the Jaeb Center for Health Research regarding my use of the do-it-yourself automated insulin dosing system, Loop. Tidepool facilitates and tracks my diabetes data to enable Jaeb to collect and analyze a body of data for 300-1000 US Loop users so that Tidepool can persuade the US Food and Drug Administration to certify Tidepool Loop and make it available as a software choice to mix and match with a variety of pumps and continuous glucose monitors.
I don’t believe the question was whether the organizations put the patient first, but whether there were financial ties to the medical and pharmaceutical companies.
It sounds like an interesting group, but they are getting their funding from JDRF which of course is supported by big Pharma and the The Helmsley charitable trust, I have no idea where their money is invested, but on their webpage One of the first things they mention is that they have programs working with big Pharma.
It is not necessarily a bad thing, in my opinion. And can be quite beneficial,
I am not in the camp that all big Pharma is bad.
I is like believing the ADA or AMA is free from industry effluence.
I agree. While I remain cognizant of the corrosion that money exerts on people and organizations, I conclude and hope, that this may sometimes be overcome.
I am grateful that Big Pharma has developed a method for producing insulin that is not constrained by the naturally limited supply of animal insulin. The raid acting analog insulins have also improved my quality of life.
Since you’ve been able to successfully avoid using insulin, @T2Tom, you may not feel the gratitude that I, a person who needs insulin to survive, do.
As far as JDRF, I will always be grateful that they devoted resources to certifying and legitimizing the continuous glucose monitor that led to my insurance initiating coverage in 2009. This one contribution has added years to my life as well as provided a crucial component of the burgeoning automated insulin dosing systems.
As far as the traditional diabetes organizations like JDRF and ADA, the moral bottom-line is complicated.
You don’t have to remind me that you are dependent on insulin to survive.
You have noted it before. A couple to times actually.
I did not just fall into being able to control my T2 without medicine.
I have worked very hard at it. No breaks for me.
I don’t think you I appreciate that. So once again Tu is not a site that seems to reflect my interested. Once again it seems to be a waste of my time here.
Today, tomorrow and the day after may be a total waste of time but I am willing to bet it is just a matter of time before you find a very valuable golden nugget in a post that will recover all that wasted time as worthwhile. Hope you stick it out with us.
How much money goes to the scientists for research and how much goes towards the army of paper pushers between the user and producer ?
Its worse then that even because wile producing nothing of value the paper pusher army requires more people to work to support what they do all the way to the dudes cutting down the trees to make that paper the bleach then all the trucks delivering office supplies , building maintenance , heating / cooling wearing out the roads, the bureaucrats and day care for all their kids as they all work producing nothing wile consuming resources.
I was in rehab after diagnosis, I made a joke what the heck do I have to do to get attention around here dress up as a computer ? All the staff all day long faces stuck in a screen.
The nurses station, face in the computer all the time, I would go ask what are you doing right now on that thing ?
Sure they need money for research but the whole system is FUBAR.
Get rid of all of it, have the drug maker and an Amazon like company do the distribution.
Here’s a grassroots advocacy group started here in Boston that I belong to:
I signed up when they were canvassing at a local farmers market. They aren’t limited to diabetes, but the guys doing the signup campaign were T1s and insulin prices are one of the organization’s primary areas of concern. (“Members of the club, I see” I said, and the young guy said, “I prefer to say members of the tribe.” I kinda liked that and have been using it since.)
Like I say, this one’s focus is regional to Boston but you might contact them to see if they’re aware of anything similar in your area—or how to get one started.
Thank you. I will check this. Tell you what I find.
I still have to check on this one, I am just re posing it here because I can’t remember in my head what thread I see everything on.