I want to get involved with advocacy, where do I start?

#1

I have always had that fighting spirit and I see so much bull in the world of diabetes.

#2

@IgotT1 you should PM @mohe0001. You might find an ally and fellow advocate.

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#3

There’s lots of stuff to do…particularly in your state, it seems. You gotta kinda pick and choose which battle speaks to you. Pick one or two things and go for it. There’s lots to choose from.

Expect to spend a few years on it. You can always, as a first step, get to know who your representatives are. But, there’s lots of secret, “abstract advocacy,” things you can do - like, having art exhibits about health and illness, or taking an EMT class where you get to know your local responders. It is helpful, for them, to know a diabetic, in real life. It will also help you, if they recognize you. You can write. You can network with diabetics in your area (you could host/start a diabetic meetup group). I find it super helpful to get to know individuals from other chronic illness groups, as well. They will be natural allies.

I see that you found the drivers license thing. Thats made me mad for years. This year it finally came before our legislature. I think that things we write on the forum get read, and that helps, too.

I really like your “video diary,” about how difficult it is to buy syringes. You could do more of that and work up to an entire web page that describes the things that stand in your way.

This year, I spoke at a medical technology conference because it was all tech developers and insurance companies and people from “the biz.” But, there was no one speaking from a patient perspective about the difficulties we face. So, I did that. I was really scared, but it turned out fantastic!

I do lots of painting work related to the human body to discuss concepts of health and illness. There’s lots of strange stuff you can do to talk about diabetes with people.


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#4

Its been my observation that most people are sheep, how many diabetics resent the prove your not an addict routine or do they just show their papers and think nothing of it ?

I think I will do that video. If I had that one interaction it would have been a youtube hit as youtubers love hostility.

I flat out said FU profiling me, I look like an addict ? Your f ugly and look like a …

I was bad. It was soon after diagnosis I was not feeling it.

And how about changing the name of diabetes to something else cause diabetes sounds gross like scabies and rabies and other diseases that and in a S like there are active multiple infectious organisms swimming around inside.

Diabetic “ic” like schizophrenic

For a wile now when I tell people my condition, usually over something food related, I say I have an insulin deficiency and if they have any IQ they get it.

Think I could pull that off , officially renaming diabetes ?

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#5

I don’t know, but I never thought of saying “insulin deficiency” before. Its a good idea. I get sick of the word diabetes. I feel like I use it so much. Its goofy word.

#6

And when I tell people I “have” diabetes its a lie cause my problem is not having something its missing something !

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#7

Maybe you should tell them you have an immune system disorder.

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#8

Then they instantly assume AIDS

#9

If so, ask if they know anyone with dandruff, which is an immune system disorder …

#10

An easy way to start is to use the tools provided by the Diabetes Patient Advocacy Coalition (DPAC)

They have a bunch of items that are being worked on at both the Federal and State levels, plus they have done a lot of the hard work that allows you to easily get plugged into an issue. From there you can either help spread the word or you can pursue an issue on your own.

Full Disclosure: I am a DPAC Champion. Which means that I volunteer my time to advocate on Capitol Hill with DPAC.

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#12

Oops hit the4 wrong button, There was a post about auto emmune disease.
IgotT! Are you auto immune or your diabetes caused by medicine issues. ?
Does not make a difference to me, but could make a difference to others.

#13

I think this is IgotT1’s state. This is super interesting. I would have no idea what this bill referred to, except that because my state sued the insulin manufacturers this years, Eli Lilly passed manufacturer coupons into our pharmacies. So, when I went to buy insulin in January, I only paid $25 per bottle for Humalog. The manufactures paid the rest (which was about $300). All of that money ($300) got applied to my deductible because the insulin makers paid it to the insurance company on my behalf (via a coupon). So, I essentially did not pay my deductible this year. The insulin manufactures did.

So, I think that an “Accumulator Adjustment Program,” must take that money, but prevent it from being counted towards my insurance premium, even though it was paid to insurance already. I would have to pay them a 2nd time. Did I summarize that clearly/correctly?

http://diabetespac.org/act-now/state/indiana-accumulator-adjustment-program-ban-h-1307/

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#14

Does DPAC take money from the pharmaceutical industry ?

#15

That might sound like HIV to some people.

#17

Yes.

Here’s the but …

The funders are NOT driving the issues that DPAC is advancing.

More importantly, any funder who made an ask to advance their cause would be shown the door and their money would be refused.

From my perspective, I am an unpaid volunteer. I’m the type of person who likes - sorry, who demands - to deal in fact. If you explore my posts, you’ll see that except for the excursions into silliness that is true.

So I have yet to see any whiff of Pharma positions in what DPAC does. To me, DPAC fills a gap in the advocacy space by focusing directly on the actual legislative steps needed to bring solutions to the table.

Want an example? Here are the results of a survey that DPAC was deeply involved in that basically told Pharma that their Patient Assistance Programs (PAPs) don’t work very well.

Survey and recommendations re: PAPs

Sorry to be long-winded, but as a DPAC Champion, I’m excited about what this group does.

#18

Yes, good job!

According to Lilly, the list price for a 10ml vial of Humalog is $275. But most online pricing tools show it to be between $295 - 335.

#19

I have to vet it for myself.

I come from the human rights in psychiatry movement and I know pharma. They will knowingly poison your children without batting an eye.

Over the course of 20 years, Johnson & Johnson created a powerful drug, promoted it illegally to children and the elderly, covered up the side effects and made billions of dollars.

That’s who those people are. That above is the most detailed article on the case I know of. 15 chapters, on the left that button leads to the table of contents.

I have to vet it myself. Don’t take it personal. Thats J&J, I got diabetes from one of Eli Lilly poisons posing as medicine. IMO they all behave badly and only in there self interests.

Maybe with diabetes they behave better.

No I have to be honest. That link looks like you did free work for their marketing dept.

#20

Of course. I hope you find the right place to get involved.

1 Like