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Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)? If you have, share your experience in the comments.
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Yes and it was a waste of time especially since that person was Scott Perry 😡
I have met with our local congress woman several times to advocate for sound diabetes and health policy. I also regularly write both my congress and senate representatives
emails about the cost of health care.
With funding from Diabetes Hands, I wrote and produced The Sweet Lowdown, which was performed at Broom Street Theater. Video of the show is on YouTube.
I also have a congressperson who is totally against everything but claims credit for everything she votes AGAINST that turns out to help her constituents. I did send one email to her about insulin pricing and got a typically talking points and worthless letter back.
I called my senator to explain how universal healthcare would make us diabetics lives so much easier. No response
I have signed petitions, sent letters to congress folks, the FDA, etc ,but have not met with anyone in person.
I met with my Congressional reps years ago in support of diabetes research funding. That went well. Less successful was my letter to President George W Bush in 2001, asking him not to stop federal support of stem cell research. I got a nice letter back, anyway.
I’ve met w congressman with jdrf. I also was deeply involved in efforts to get cgm approved by Medicare and represented the endocrine society in meetings with them, and testified before FDA advocating for dexcom G 5 to be approved for fingerstick replacement, which was needed before Medicare would consider cgm coverage . I was one of many that day. Waiting for the verdict on whether the advisory board would recommend approval was like waiting for a jury verdict. I was sitting next to Aaron Kowalski who atbthe time was jdrf chief mission officer. When the vote came back overwhelmingly for there was euphoria in the room. Everyone knew the real implication was for Medicare. I was in a key meeting w Medicare staff on this question and the questions being asked and the attitude of the people asking demonstrated that they did not get it. I was furious and sad leaving that meeting. Fortunately a top official who was involved likely overruled the knuckle heads who were in opposition. The decision was announced a few months later. One of the happiest days of my life!!!
Thank you for you work.
Demonstrably no shortage of knuckleheads and flapdoodles, perhaps to be doomed to the dustbin of history. But good work is always appreciated. 😇
Thank you for all your hard work!
Yes I have spoken with the Irish Minister for health in person about issues of not having a CGM scanning device on the LTI list in Ireland, also not having nurses available to train Diabetes patients approved by Doctors to go on the pump system in Ireland and also about the need to have a diabetes registery set up in the country. One of those items have now recently being addressed, the Dexcom CGM is now listed.
Yes, for several years I’ve consistently written letters/email to my State and U.S. senators and representatives. I use templates from T1 International, JDRF, ABLE National Resource Center, and others. Insulin availability and affordability, the difference between T1 and T2, pushing the ABLE Age Adjustment Act, and more. I typically get form responses back.
I have used and asked my family to use an email letter to our elected officials from JDF.
Wrote to my state representatives. Got a form letter from one (R) full of platitudes and a personal letter from the other (D) listing several ways she’s sponsored bills and voted for helping people with diabetes.
Over the years I’ve signed numerous petitions and sent personalized emails to our congress and senate representatives. I’ve also called their offices and left messages. I get form letters back in response.
In 2020, I mailed letters and sent emails to Senator Rick Scott (R), Florida, Senator Marco Rubio, Florida , and Congressman John Rutherford (R), Florida asking for help correcting a Medicare policy that prohibits Continuous Glucose Monitors (CGM) from communicating directly with insulin pumps. (That’s right, there is such a rule). I heard absolutely nothing from Senator Rick Scott and Congressman John Rutherford. Six months after I sent the letters, I received form letter from Senator Marco Rubio that talked about the frustrations of healthcare expenses, and his commitment to finding cures various diseases. He did not even acknowledge issue that I asked to be addressed.
Thank you for your efforts on these seemingly silly rules. I will add that to my concerns/tasks. I am currently working on the fact that NYS medicaid providers refuse to cover smart Inpen, however they are covering $5000 pumps. My daughter prefers to have less devices attached to her, has had commercial coverage several years for this device. There are endless illogical injustices. We soldier on. Thank you again.
Lawrence S — Yes. And to add insult to injury to ignorance, the Honorable Rick Scott now only was oblivious to my suggestion, for the next seventeen months I got nothing, NOTHING, but requests for money. Is it any wonder that politicians are labeled unresponsive? I though unresponsive was for cadavers?!?
Ahh Life, et al.:
It should be noted that on August 8, 2022, Senators Marco Rubio and Rick Scott VOTED AGAINST the bill to cap the price of insulin at $35/month.
I researched the House of Representatives vote on H.R. 6833: Affordable Insulin Now Act, March 31, 2022. One hundred ninety three (193) Republican reps voted against reducing the cost of insulin, including Florida representative John Rutherford. In case you wanted to know.
Find your legislator’s vote at: https://www.govtrack.us/congress/votes/117-2022/h102
Yes, but……I am limited to signing letters and surveys because I am basically shut in and also an introvert at heart.
No, but I’d it really “no”? I’ve not spoken directly to them but have submitted letters etc.
Yes, Many times. Wish I had time to share now. I am advocating constantly for t1d community and several others. Met with elected officials, attend many events with officials in attendance . . . . .
No, I’ve not done any in person advocacy, only letter writing.
I lodged complaint & advocated with local hospital to change their protocul for hospitalized Type 1s using a pump.
Awesome! How did things turn out. The hospital I have to use requires T1D patients to turn over their pumps, CGM’s, and meters. They’ll do maybe 5-6 fingersticks a day, and set a target bg of 200. Really lousy T1D management. Thanks for you efforts, I’d love to hear the story.
Mostly calling or writing senators when a problem existed. They always send a letter thanking me for addressing this different issues!
I was in a commercial advocating for healthcare. I have written confess people and had a letter I wrote read on the senate floor. I also sign petitions and add my story when asked
Checked a box on a robo email and got a form letter back from a state senator. To which I replied and asked why private insurance is being discriminated against on the latest pharmaceutical bill they are so proud of…received another robo email from her in the vain of vote for me….lost faith and interest.
I have signed up to participate multiple times but have never been contacted.
I used to write guest editorials in the local newspapers during November. But never got published (I wish D month wasn’t in competition with elections!) When I contact elected officals, I use an economic argument – that access to what we need to manage our T1D means that we can continue to work (and pay taxes), support our families, contribute to the local economies. I also delve into the fact (which should be of interest to federal officials) that access to what we need meams that we won’t experience the devastating complications that would make it hard to have a job, would result in disabilities that would block a lot of employment, we would require public assistance to survive and by the time we arrive at Medicare elgibility we’d be a lot more expensive.
I did finally see the results of one letter. In a campaign for governor a candidate held up a vial of insulin, stated that it costs just a few $ to manufacture and distribute but retails for hundred of $.
Thanks to all of you who have written or telephoned or testified. Your efforts have worked, but we must continue to lobby. I like Kristina’s economic arguments. 🙂 I’ve heard it’s best to keep letters and phone calls polite and short and limited to one specific point. Mention the specific senate or house bill you’re endorsing, if available. And of course “personalize your message.” Politicians are especially willing to listen to us in an election year. If you contribute a $5 check to a politician, make sure to note on the memo line, “To cure diabetes” or “Medicare for All” or “Thanks for lower insulin cost” et al.
I write regularly as I have T1D and am a retired Certified diabetes educator. they always answer with a form letter. Also have met with 1 US House representative at his office which was excellent and he was very responsive 0 this was arranged by the local JDRF office and anyone allowed to come – very few did but it was very informative and got to say anything I wanted. Met with my state representatives (picked the 3 closest districts to me) to discuss diabetes issues. All were interested and responsive and I offered tone a helper on anything related to diabetes. They asked good questions and were quite interested. I just called and made an appt to discuss with them my diabetes itinerary. They all agreed immediately. I keep in touch with their newsletters and write when appropriate.
I advocate for diabetes issues constantly by sending letters to my representative and senators as well as calling their offices. I have also met numerous times by phone and zoom with senators and representatives on these issues I work on advocacy for JDRF, and the national Federation of the blind. I am currently a member of a seven person task force advocating for simplification and accessibility for insulin pumps for the blind and visually impaired. We are making great progress and recently have been meeting regularly with all of the major pump companies this task force is a collaboration between the national Federation of the blind, American council of the blind, and Canadian national Institute for the blind. we are showing them that features they need to add to pumps to make them accessible for people who are visually impaired will also give sighted people many wonderful features that they will also find valuable. Such as the bolus feature that was recently added to the Tandem T connect app. diabetes is still the leading cause of blindness in the United States and other countries in working age adults and as the population ages there will be increased sight loss due to not only diabetes but age related eye conditions. We can use everyone’s help in spreading the word for the need to make insulin pumps accessible.
Thank you for your work.
Not in person; I have signed internet petitions, sent emails, etc in the past, particularly with respect to costs of insulin and supplies and insurance coverage.
The only active, letter-writing advocacy I have done is with a medical group who had a policy that I thought was unfair and not valid with current knowledge.
My efforts were ignored, so I left the medical group.