Topic

type 1 diabetes

10 petitions

Update posted 4 weeks ago

Petition to Jimmy Anderson, Jill Billings, Katrina Shankland, Dave Hansen, Robin Vos, Dave Considine, Tony Evers, Adam Neylon, Cindi S. Duchow, John Jagler, Travis Tranel, David Steffen, Tyler August, Rob Stafsholt, Rick Gundrum, Daniel Riemer, Steve Doyle, Dianne Hesselbein, Amanda Stuck, Shelia Stubbs

Cap Insulin Prices in Wisconsin

As a person managing type 1 diabetes myself of over 15+ years, I understand that affordable insulin is truly a life and death matter. Simply put, INSULIN IS NOT OPTIONAL.  That’s why I am seizing the opportunity to support proposed legislation that would cap the amount insulin can cost in Wisconsin. I need your help to make this law a reality.   There is a health care crisis happening around the country. Type 1 diabetes affects approximately 1.25 million Americans. 200,000 of them are youth. Insulin is NOT a cure for type 1 diabetes - it is a necessary treatment that helps people managing type 1 diabetes survive. Insulin should not be so expensive that people have to worry about how they’re going to afford this life-saving medication.  I’m proud that my home state of Wisconsin could become the next state, after Colorado, to put a price cap on insulin. Although $100 per month for insulin remains unaffordable for many, this legislation is an important first step and is very exciting -- particularly because insulin can cost as much as $500 per month. My hope is that Wisconsin can help lead the national conversation around health care reform, but I need your support to make it happen.    Add your signature of care and tell the Wisconsin Legislature to cap the price of insulin in Wisconsin at $100 per 30-day supply. The pharmaceutical companies that control insulin pricing should be ashamed. This law can help put some humanity back into our healthcare system by making insulin more affordable for thousands of people. Help make this legislation a reality.  If Colorado can do it, so can Wisconsin, and so can every state so that no matter where a diabetic lives, they can access life-saving medication without emptying their bank accounts.  Learn more about Type 1 Diabetes at beyondtype1.org. Please add your signature to this document to show your government representatives, Reps. Jimmy Anderson (D-Fitchburg), Jill Billings (D-LaCrosse), Katrina Shankland (D-Stevens Point) and Sen. Dave Hansen (D-Green Bay), that you support the Wisconsin Insulin Price Cap Bill. This will help Wisconsin families everywhere live easier while managing the auto-immune disease, type 1 diabetes. Help to end disparities in the type 1 diabetes community so all families of different socioeconomic circumstances managing the condition can live easier with it.  The official definition for type 1 diabetes, as told by JDRF (Juvenile Diabetes Research Foundation) is: "Type 1 diabetes (T1D) is an autoimmune disease in which insulin-producing beta cells in the pancreas are mistakenly destroyed by the body’s immune system. T1D seems to have a genetic component and can be diagnosed early in life but also in adulthood. Its causes are not fully known, and there is currently no cure. People with T1D are dependent on injected or pumped insulin to survive." Type 1 diabetes effects approximately 1.25 million Americans. Of this number, 200,000 are youth. Insulin is NOT a cure for type 1 diabetes. It is a necessary treatment that helps people managing type 1 diabetes survive. Should this bill go through, people managing type 1 diabetes can be less stressed about the cost and reach better blood-glucose levels to live better with the condition. Learn more about T1D community disparities here: https://insulinnation.com/living/reducing-disparities-in-the-type-1-diabetes-community/. Learn more about the bill here: https://waow.com/news/wisconsin-news/2019/07/24/legislative-proposal-would-cap-cost-of-insulin-in-wisconsin/ Watch this petition for updates.

Julia Rose
62,934 supporters
Update posted 4 months ago

Petition to Kevin Sayer, Eric Garcetti, Gavin Newsom, Nathan DeGodt, Richard Doubleday, Quentin Blackford, Andrew Balo, Steven Pacelli, Donald Abbey, Jake Leach, Patrick Murphy, Jeffrey Moy, Barbara E. Kahn, Bridgette Heller, Steven R. Altman

Dexcom: Fix G6

Our Story My 5yr old daughter, Coral, was diagnosed with Type 1 diabetes when she was 15 months old in March 2016. T1d is a life-threatening autoimmune disease where the body's immune system attacks the beta cells in the pancreas making that person insulin dependent for life. There is no known cure and it is not caused by poor diet or lifestyle choices. All T1d's must monitor their blood glucose (BG) 24/7/365 to not only survive, but to thrive. Hypoglycemia or “low” BGs less than 55 mg/dL can cause seizures – not always obvious, and death if not immediately treated with fast-acting carbs such as juice, fresh fruit, or a glucose tab. Hyperglycemia or “high” BGs more than 200 mg/dL for Coral causes her to urinate frequently, have excessive thirst, and become moody or sleepy. Most importantly, she's hypounaware and not able to detect her low BGs.  In April 2016, we decided to invest in a Dexcom G5 continuous glucose monitor (CGM) to better manage her T1d. This CGM system requires a pre-authorization letter from an endocrinologist which must also be approved by insurance prior to ordering the first kit. It is a very tedious and time-consuming process on top of managing a chronic medical condition. Pre-auth is required by Dexcom every year, regardless of this being a lifelong disease. My hubs was a former underpaid medical professor at University of Hawaii back home on Oahu. He also has a PhD in physics. Dexcom disregarded his resume prior to moving to Los Angeles, CA in August 2016. He currently works as a top-level artificial intelligence engineer. We sacrificed our beloved Hawaii lifestyle to better afford all of Coral’s medical needs and life-saving insulin. G5 vs. G6 The G5 system may not have been as accurate upon 2hr warmup completion as the G6, but it actually lasted the full seven days as advertised and approved by the FDA. We were also able to restart the G5 sensors to prolong its use and delay another painful site change for our toddler. We upgraded to G6 in October 2018 unaware of the torment we would endure. The quality of sensors, transmitters (gray battery), and customer service & technical support have declined dramatically over the past year. Despite many hacking methods, the G6 cannot be restarted as of late. Dexcom seems to have put in added “security” efforts in their software to make sure of this. The G6 does NOT last the full 10 days as advertised for Coral and many other T1ds we’ve conversed with across social media. We’re lucky if we can make it to the 7th day of use. Sensor Errors with G6 are the same as “???” on the G5. Dexcom will no longer be manufacturing and shipping out G5 supplies as of early 2020. I’ve spoken with multiple supervisors, been on hold for hours with technical support, only to repeatedly answer the same questions regarding G6 replacements: No. She hasn’t taken any acetaminophen. Yes. She’s well-hydrated. Yes. It’s on her belly or upper buttocks, but her endo approves arm sites since she’s so little and also using an Omnipod or “pod” insulin pump on thighs and arms. Upper buttock sites don’t last more than 3 days even with I.V. Prep (sticking agent and cleansing wipe) and Opsite FlexiFix tape (clear adhesive) due to rubbing against clothing and sweat as an active child. My Tipping Point We’ve tolerated the repetitive questions by multiple reps over the phone and overseas in the Philippines – Dexcom’s latest outsourced call center (because Kevin Sayer’s too cheap to pay American workers fair wages that compensate the cost of living in California. More on that later). We’ve tolerated weekly failed sensors for two years! So frequent that I made a Dexcom Log Sheet for all of the failed sensors (download for FREE on my blog at Typeonediabetic-life.com). Only 15 sensors since October 2018 have actually lasted 9-10 days. In recent months, Dexcom has made it even more difficult to request replacements whether by phone or an online request ticket (my preferred method these days). I received a call on Tuesday, August 25, 2020, from a rep in the Philippines asking me to confirm my address, answer the same old FDA questions, before she could even ship our replacement. She said, “We’ve recently changed our process.” This is absolutely redundant and absurd when I’ve already confirmed all necessary information at https://dexcom.custhelp.com/app/webform As of 8/29/20, we've had five G6 sensors fail before its 4th day! It doesn't matter where we place it on her body. 3 of the 5 sensors were from one box and the last two barely made it to its third day of use without sensor errors. I am sick and tired (literally, sleep-deprived more than ever) of consecutive failed sensors and having to request a replacement every week. Note: They use the total days missed from all sensors to calculate how many they’ll actually replace for you. Example (hypothetical and quite literally speaking): Say we had three sensors fail before it’s 10th day within the past month. Sensor 1: failed on its 5th day. Sensor 2: failed on its 7th day. Sensor 3: failed on its 9th day. Dexcom technical support will tally up total days missed out of 10 days each. Total days missed = 9 days = 1 (one) individual sensor they will offer to replace. I’ve had to demand to speak with multiple supervisors about this ridiculous "policy" of theirs for months more now than ever. If it fails before its 10th day, it should automatically be replaced. We shouldn't have to justify our actions for a faulty medical device. Corporate Greed To those who defend Dexcom by saying, "Be thankful for this technology" - we are when it works as it should. We pay for insurance to help cover the cost of this expensive CGM. Otherwise, if bought directly from Dexcom.com, (1) G6 transmitter will cost $237.00, (1) receiver costs $365.00, and a 3-pack of G6 sensors costs $349.00. Dexcom is a for-profit company not a charity. Kevin Sayer has failed to listen to his customers concerns and make necessary changes. Instead, he continues to put profit over people by deceiving customers into thinking the transmitter cannot be recharged – which it can; and failing to pay employees better wages. According to Wallmine.com, Kevin Sayer earns over $10.2M as Chairman of the Board, President, and CEO at Dexcom. He can afford to keep jobs in America and truly bring back the quality and assurance we expect from a medical device company that millions of diabetics depend on. It is the best on the market so far, but it still needs improvements. These suggestions are detailed below and on my blog as well.  NOTE: Freestyle Diabetes, aside from Medtronic, offers the 2nd most reliable glucose management device, but it still isn’t a fully developed CGM and will not work with a closed-loop system. Libre 3 - a real-time CGM, was released in Europe in September 2020. It is still pending FDA in the US, but due to the pandemic, it appears trials for children over 4 years old have been placed on hold of course. More on that at ClinicalTrials.gov and MedTechDive. Closed-Loop System (CLS) is only good as its CGM Dexcom has partnerships with Tandem Diabetes and Omnipod, two of the most popular insulin pump manufacturers. The latest tech with pumps is known as a closed-loop system (CLS) either DIY Loop or Tandem’s Tslim X2 with Control IQ. We’re using DIY Loop where a mini computer known as Riley Link or “Riley” allows communication between her CGM, iPhone and pod (pump). Loop will automatically adjust temp basals and keep her BGs in user-programmed set target ranges throughout the day. When both Loop’s prediction algorithm and her CGM is working as it should, we can achieve amazing glucose control with 80-95% in-range (80-150 mg/dL fasting) and actually get a decent night's sleep. We can even bolus (give insulin) her with the Loop app on her iPhone or my Apple Watch which is paired with her iPhone. If her CGM is not working accurately (ex: more than 15 mg/dL off from fingerstick values) or giving multiple sensor errors, it results in Loop disconnecting, running usual programmed basals, resulting in many pokes for Coral and even suggesting higher than needed boluses with her pump. This is especially troublesome overnight when BGs can drop dangerously low as we sleep and she could die overnight from a severe hypo. That’s why we set our phone alarms, waking three times overnight to poke and check her BG. No peace of mind with a faulty sensor. No breaks in between site changes if we’re having to replace it and insert a new one less than 7 days apart in addition to pump site changes every 2-3 days. Fix G6 We’re thankful for when Dexcom G6 actually works as it should. However, with the continuous decline in customer support and quality, we can no longer depend and trust this product. My child deserves better. Millions of insulin dependent diabetics deserve better! We don’t really care about the release of a slimmer G7 – which Sayer has placed so much emphasis. We want Dexcom to #FixG6 now! Here's how [rhyming intended]: Hire better engineers and pay them fair market wages - according to Glassdoor.com, the average salary for Senior Software Engineer at Dexcom is $103,646 base salary - no cash or stock bonuses. Meanwhile, other high-tech companies like Facebook are paying their Sr. Software Engineers $181,399 base salary + an average of $30,000 in cash bonuses and $107,568 in stock (Source: Glassdoor.com). Make the transmitter rechargeable – save production costs and customers money too! This is possible and evident with the Eversense long-term CGMs “removable and rechargeable smart transmitter.” Learn more at eversensediabetes.com. To require customers to repurchase the transmitters every 90 days or sooner is borderline criminal per the Electronics Right to Repair Act of 2018 (see below for sources). Even the transmitters don’t last the full 90 days as advertised. FDA process needs to be more vigorous with medical devices. Improve sensor longevity - add more enzymes to tip of sensor wire to maintain and build a charge strong enough to send to transmitter and then to phone and/or receiver (if using). Again, Sayer, this is worth looking into and redirecting your costs. Rethink your design – invest in non-invasive CGMs using infrared technology similar to the heart monitor of the Apple Watch. This is the future of CGM tech. The interstitial fluid is much to fickle for a sensor wire especially in lean or young, well-hydrated individuals. Make the replacement process easier online – reps can clearly see we’ve answered all necessary information in the Product Support Request form. Don’t waste either of our time with a pesky phone call to confirm everything again. We’re in the middle of a pandemic! Improve the Follow app already – let’s not forget about the #followappocolypse the weekend of Thanksgiving 2019. The Follow app is still lagging when loading data. I have screen-recorded this and the longest it’s taken to load the app was 35 seconds (felt like a minute) only to display “No Data.” I’ll check her phone (main user) and thank goodness there’s data and she’s ALIVE! This is because Dexcom has failed to upgrade their servers, but decided to increase their data latency instead, which obviously cannot handle all of its users. Fully train all staff consistently no matter the location of their office(s). If they lack compassion and patience, then they shouldn’t be working in customer service. Be more transparent with changes to adhesive, company policies, and ordering process that affect every customer. Offer discounts or coupons for referrals or new customers – a reward system would be nice. If greedy Big Pharma (Eli Lilly, Novo Nordisk, and Sanofi) can offer discounts for certain individuals, then so should Dexcom. Access and affordability for all! Not everybody can go to Costco and have to explain this process to them as well. Unless other investors are willing to take the risk on a CGM startup, there won’t be any direct competition for Dexcom. No push for them to take the initiative to further improve on their technology and quality. It’s a long-term financial risk and investors want typical 2-3 year ROI which just doesn’t happen in the medical device market due to 5-10 year FDA approval process. We’re all stuck with Dexcom so we might as well hold them to their moral duty to better service those that rely on medical devices to improve our quality of life. Key Top Executives at Dexcom to hold accountable for Dexcom failures: CEO & multi-millionaire, Kevin Sayer EVP, Chief Technology Officer, Jake Leach EVP, Quality and Regulatory Affairs, Don Abbey Sources: Wallmine.com. “DexCom executives and stock owners.” https://wallmine.com/people/7684/steven-r-altman Accessed online 30 August 2020. Glassdoor.com. “Dexcom Engineer Salaries.” https://www.glassdoor.com/Jobs/Dexcom-quality-assurance-Engineering-Jobs-EI_IE37983.0,6_KO7,24_DEPT1007.htm Accessed online 30 August 2020. Indeed.com. "Dexcom Software Development Salaries in California." https://www.indeed.com/cmp/Dexcom/salaries?job_category=techsoftware Accessed online 30 August 2020. A13.asmdc.org. “Eggman Introduces Legislation to Create a ‘Right to Repair’ for Electronics.” https://a13.asmdc.org/press-releases/20180307-eggman-introduces-legislation-create-right-repair-electronics Acessed online 30 August 2020.

Shelsea Deng
1,493 supporters
Update posted 11 months ago

Petition to Minnesota State Senate, Minnesota State House, Mark Dayton, Amy Klobuchar

Put a price cap on insulin in Minnesota

Insulin means the difference between life and death for those who need it. My husband, along with 1.25 million other Americans, is a type 1 diabetic. He was diagnosed at 8 years old and has been insulin dependent since. Type 1 diabetes, once known as juvenile diabetes or insulin-dependent diabetes, is a chronic condition in which the pancreas produces little or no insulin. Being type 1 diabetic has no cure and is a constant battle of maintaining once’s blood sugar levels with insulin. People who use insulin need this medication every day of their lives in order to live.We have witnessed insulin prices soar over the years. Between 2002 and 2013 the average price of insulin nearly tripled. The cost of insulin continues to rise steadily and steeply, creating financial hardships for individuals who rely on it to survive, particularly those who are uninsured or underinsured. Resulting with many that are forced to ration insulin as a means of survival. My heart breaks as I hear stories emerge of people with diabetes dying because they are rationing their insulin.No one with diabetes should die because they can't afford their insulin. It's a medicine that can be produced for just a few dollars but manufacturers Eli Lilly, Sanofi, and Novo Nordisk mark up the price as much as 5,000 percent leaving millions of Americans with diabetes no choice but to pay it.It’s time to put an end to the pharmaceutical company’s greed and make insulin affordable for all who need it! Colorado was the first state to pass a bill putting a cap on the price of insulin. Illinois has followed suit and is now the 2nd state in our country to put a cap on the skyrocketing cost of insulin. Let’s ask those with the power to do so to pass a bill capping the price of insulin here in Minnesota as well! 

Jaicee Francis
4,422 supporters
Update posted 1 year ago

Petition to Pharmaceutical Research and Manufacturers of America, U.S. Senate, Donald J. Trump

Make insulin affordable for all diabetics

As a type 1 diabetic, injecting insulin is a necessary and indispensable process that I undergo numerous times a day. I personally use about two 300-unit pens each and every week. Each insulin pen costs upwards to more than $100. Without an insurance plan, this means that I would have to pay almost $1000 each month just for insulin. Insulin has been easier and cheaper to produce than ever before thanks to new and improved medical technology and research, but every year, insulin prices has only climbed higher and higher. According to a 2016 study by the medical journal JAMA, insulin prices have tripled from 2002 to 2013. Some diabetics simply cannot afford to pay for that price. Because of this outrageous price, many diabetics have been forced to illegally smuggle in insulin from outside the United States or buy unauthorized or under-the-counter insulin. Some diabetics have even lost their lives due to insufficient insulin. Just as no two humans are exactly the same, insulin needs vary from person to person. Everyone needs carbohydrates, even diabetics. Diabetics should not be punished by paying such a high price for medicine that they use to stay alive. Several states have started capping off insulin prices, but we need to make this nationwide. With a reduced and more manageable  price on insulin, wealthier diabetics won’t have to unnecessarily spend about a new phone’s worth of money each month and less wealthier diabetics won’t have to lose their lives.

Jana Chiang
1,612 supporters