Diabetes Deadliest Mistakes

Whether you are living with type 1 or type 2 diabetes, you likely take medication that helps keep you alive and functioning properly. We continually measure, count and remind ourselves to take our medication and/or insulin very meticulously to ensure we are taking the proper medication and correct doses.

But we are human, and mistakes do occur. Sometimes these mistakes can be deadly.

Recently, while mid-conversation, I managed to take 18 units of Fiasp instead of my long-lasting insulin, Tresiba. This has happened to me one time before when I was first diagnosed when I took 16 units of Humalog instead of Lantus. My endocrinologist sent me right to the hospital because at the time I was new, nervous and unable to handle it on my own. This time, the moment I released the needle from my skin my stomach dropped to my feet.

Fiasp is even faster-acting than Humalog and I knew I had minutes to ingest a whole lot of carbs to counteract the large amount of insulin I had just taken.

I managed to inhale over 200 g of carbs in 20 minutes in the midst of a mild panic attack. I was nauseous, jittery and scared for what lay ahead. The day wound up being a series of lows but I was lucky I came out of it unscathed. Had I not realized I took the wrong insulin I could have easily passed out, had a seizure or died. My original plan for the day was to kick it off with a walk to a nearby shopping center so had I not realized, my blood sugars could have plummeted and I could have been left for dead on the side of the road.

I got lucky. We all have gotten lucky. Some have not. Many of us, unfortunately, know people who have lost their lives due to a diabetes mistake; and yes, sometimes their own.

I asked our friends in the diabetes online community what their biggest and deadliest diabetes mistakes were and this is what they had to say.

“I forgot a snack after breastfeeding and had my first hypoglycemic seizure. The first reading they could get was 27.”

“I am a type 2 diabetic and sometimes get shaky and I know I need a snack. I grabbed a brownie as I left my house but I wasn’t feeling any better. I realized that I grabbed a low-carb brownie so it wasn’t going to help raise my blood sugar! I wound up having to stop for a soda.”

“I’ve mixed up my insulin before. 27 units of Humalog is much different than 27 units of Levemir!”

“In my last year before I quit drinking, there were 2 distinct times I can remember where I was so low and so drunk I couldn’t figure out how to get food to save my life. One time I had my friend help me. The other time I went back to sleep and miraculously woke up the next morning.”

“I took some expired test strips from someone in the diabetes online community. For days I kept reading really high and couldn’t understand why. Finally, I rage bolused and took a hefty correction dose. I started seeing spots and beads of sweat formulated all over my entire body. My reading was 28. Turns out those test strips were bad and I could have killed myself trying to save a couple of bucks.”

“I forgot to check my blood before I had breakfast and had a banana and shot up to 500!”

“I recently bolused for a snack twice. I was low in the middle of the night but the snack was larger than needed to fix so I did took a partial bolus and went back to sleep. I woke up and didn’t remember taking any insulin so I did it again. Rollecoasting ensued. I’ll mess up worse, I’ve only been at this for 2.5 years.”

“Bolused for 80 carbs instead of 8 before a workout without realizing it. Dexcom alerted and I quickly realized how much IOB I had. Apple juice and gels to the rescue.”

“I’m on Zyloprim for my gout and I fill my pill case once a week. I accidentally put Zolpidem in and was wondering why I kept waking up so damn tired!”

It is safe to say that managing our condition can be risky at times. We are administering medication and insulin, which can be extremely dangerous if the wrong dose is given. We must remain diligent at all times to avoid errors, all the while realizing that we are human and we do make mistakes. Have grace with yourself.

Have you ever made a dangerous mistake? Comment and share below, hopefully, we can help each other to avoid similar occurrences.

Source: diabetesdaily.com

A Letter to My 12 Year Old Self: Diabetes, 20 Years On

Dear Chrissy,

It’s June 20th, 2000, and right now you’re in the emergency department of the King’s Daughters Children’s Hospital in Norfolk, Virginia. You were supposed to be on a weeklong vacation with your siblings and parents, frolicking in the salty seawater and eating cotton candy on the boardwalk of Virginia Beach, but instead, on day three of the trip, you’ve been rushed via ambulance to the ER, feeling weak, nauseous, and on the brink of unconsciousness. You’re small. An active cheerleader in your middle school, you’ve lost over 30 lbs in a little under a month, which is striking on your lithe frame. Every nurse notices how underweight you are.

The glucometer at the Urgent Care your parents took you to this morning simply read, “HIGH”. When the nurse looks at your parents and says the words, “your daughter has diabetes”, it’s the first time you’ve ever seen dad cry. You’re completely terrified that the word “diabetes” has “die” as the first syllable. Are you going to die? Thankfully, no. Not today, and not within the next 20 years, either.

The next few years will be hard, actually, they all are. Sadly, even though diabetes is technically “manageable”, it never really gets any easier, but you’ll become tougher. You will try out four different insulin pumps before you find one, at the ripe old age of 30 (and spoiler alert, it’s tubeless). You’ll prick your tiny, fragile fingers literally thousands of times, but in 15 years (the time will fly by, I promise), you’ll use a seemingly magical machine that checks your blood sugar 288 times per day for you, without you having to do A THING, and it’ll transmit the numbers to your telephone (those things are cordless in the future, too). Eventually, but I’m getting ahead of myself now, those numbers will talk to your insulin pump for you, and make dosing decisions while you drive, or work, or makeout, or go running, or read a novel. Science is pretty neat.

Once you start the 7th grade, you won’t tell anyone about your new mystery disease. Honestly? You’re embarrassed. The only other people you’ve ever met with diabetes were your elderly next-door neighbor’s sister and Wilford Brimley, from TV. You make your mom pinky swear that she won’t tell your friends’ moms, and you promise yourself that you just won’t attend sleepovers until you go away for college. Please don’t do this to yourself. Spare yourself the heartache. Diabetes will give you physical battle scars and mental wounds, but it will also develop some of the most beautiful attributes people will love about you: your compassion for others, your enthusiasm to live in the moment, your fearlessness in the face of adversity, your humility, your grace.

You’ll be the only 13-year-old girl drinking Tab at your bestie’s summer birthday party. Don’t be embarrassed. Exotically-flavored seltzer waters will be all the rage in 20 years. You’re just ahead of your time.

You’ll grow up quickly. You were always conscientious, polite, and studious, but having diabetes will make you disciplined, strong-willed, and courageous–you won’t really have a choice in the matter. Diabetes will toughen you where you’re soft; diabetes will break you open.

You’ll become obsessed with counting carbs (trust me, this is good), and dosing correctly (also good), but will become preternaturally focused on food and nutrition. You will deny and deny and deny. You’ll eat an apple when everyone is enjoying an ice cream; you’ll swear that string cheese is more fun than cookies. This can sometimes be good in the name of a better hba1c, but please, let yourself be a child for a little while longer. You’ll cry, because having a chronic disease can be very lonely and sad sometimes, and it’s okay to be sad sometimes, too. Go to therapy. It’ll be worth it.

Your mom will make you go to diabetes camp. You will resist going at every turn. You will cry and scream, and when she drops you off at the loading dock of Camp Setebaid, you swear you’ll never talk to her again. But by night three, you will have forgotten all about the hardships of living amongst “nons”. You’ll meet some of your closest friends at diabetes camp, and they’ll last a lifetime. You’ll have camp crushes, and camp kisses, and still remember campfire songs until your mid-30s. You’ll go waltzing with bears, and do the polar bear swim, and learn how to build a campfire, and get lost in the woods under a velvety night sky, and will learn how to use a cleavus, and will eat two dozen chocolate chip cookies one night when you accidentally replace your dose of Lantus with Humalog (oops). You’ll pee your pants laughing, and cry every summer when camp ends. You’ll make many friends along the way–friends who get it, who get you, for the first time ever. You’ll lose some of them over the years, to diabetes, or depression, or both, and will weep at their funerals. Your best camp friend will be in your wedding party in 17 years.

You’ll become tough. You never asked for this life, but you sure have made a point of living it to the fullest. There will be many doctors who will try and tell you things you can’t or shouldn’t do: join the swim team, play competitive sports, travel abroad, go to college out of state, have children–and you’ll prove most of them wrong. You will learn to not take no for an answer. You’ll develop an iron will. You’ll become gritty as hell.

Diabetes will encourage your interests in health and well-being, and out of college you’ll be a social worker, eventually getting your master of public health (I don’t think this degree exists in 2000, but it’s coming down the pike). You’ll be a vegetarian. You’ll run marathons. You’ll climb something that’s called a 14er (I know you live in Pennsylvania, but someday, when you live in Colorado, this will be a very big deal). You’ll find your dream job of working in diabetes advocacy, that will take your passion and use it to help thousands of other people who struggle with the same issues you do. You’ll change lives for the better.

One day, you’ll meet a man at work, who’s sweet and kind and compassionate. One evening, still in the early days of dating, you’ll notice he bought three containers of glucose tabs and stored them in his pantry without telling you. “Just so you feel safe here,” he says. Three years later, you’ll marry him.

In 20 years, you won’t have everything all figured out, but you’ll know more about who you are, and who you want to be. And diabetes, in large part, has helped to craft that. I know you’re seeing dad cry right now, so why don’t you go give him a hug and let him know everything will be okay. Because, really, in time, it will be.

Love,

Christine

Source: diabetesdaily.com

What to Do If You Need Insulin Right Now

This content originally appeared on Beyond Type 1. Republished with permission.

By Lala Jackson

What to Do If You Have No Insulin at All

Go to the emergency room. Under US law (The Emergency Medical Treatment and Active Labor Act), the emergency room cannot turn you down in a life-threatening emergency if you do not have insurance or the ability to pay.

If Emergency Room staff is telling you they cannot treat you, stay put. Be clear that you are in a life-threatening emergency because you have type 1 diabetes (T1D) but do not have insulin. Do not leave. Please note that urgent care centers are not required to abide by the same laws.

Once you are stabilized and before you leave the hospital, hospital staff is required to meet with you to make sure you understand that you are leaving the hospital of your own accord. At this time, let the hospital staff person know about any financial situation you are in. Some hospitals are aligned with charities that can help you pay. Other hospitals offer payment plans based on your situation. No matter your financial situation, know that your life is the most important thing.

What to Do If You Have Some Insulin, But Are About to Run Out

Utilize Kevin’s Law

If you have an existing prescription at your pharmacy, but have not been able to get ahold of your healthcare provider to renew the prescription, you may be able to take advantage of Kevin’s Law. Kevin’s Law was named for a man with T1D who passed away after not being able to access his insulin prescription over the New Year’s holiday. Under the law, pharmacists are able to provide an emergency refill of insulin in certain states, without the authorization of a physician to renew the prescription. Rules around the law vary from state to state and not all states have the law in place. Kevin’s Law only applies to those who have an existing prescription and, depending on where you live, your insurance may or may not cover the refill. Learn more about Kevin’s Law, including whether or not your state has it, here. Please note, your pharmacist may not know the law by name, or know that the law exists. If you are in a state with Kevin’s Law and working with a pharmacist who is unaware, stay put and ask to speak to someone else in the pharmacy.

Ask Your Physician for Samples

While this is not a long-term access option, your care provider may be able to provide you with a few vials/pens for free, and bringing your HCP into the access conversation means that they can help direct you to other options that might be available to you, like local community health centers with insulin available.

Utilize Patient Assistance Programs – Standard out of Pocket Cost $0

  • If you take Lilly insulin (Humalog, Basaglar) call the Lilly Diabetes Solutions Call Center Helpline at 1-833-808-1234
    for personalized assistance. You may be eligible for free insulin through LillyCares.
  • If you take Novo Nordisk insulin (Fiasp, NovoLog, NovoRapid, Levemir, Tresiba) and demonstrate immediate need or risk of rationing, you can receive a free, one-time, immediate supply of up to three vials or two packs of pens by calling 844-NOVO4ME (844-668-6463) or by visiting NovoCare.com
  • If you take Sanofi insulin (Admelog, Lantus, Toujeo): the Patient Connection Program provides Sanofi insulins to those who qualify, which is limited to those with no private insurance and who do not qualify for federal insurance programs and who are at or below 250% of the federal poverty level – with a few exceptions.

Utilize CoPay Cards – Standard out of Pocket Cost $35 – $99 per Month

Copay cards that reduce the out-of-pocket cost you pay at the pharmacy exist for most types of insulin. Some copay cards can be emailed to you within 24 hours. Currently, copay programs exist for:

  • Lilly, capping copays at $35 per month for those with no insurance or with commercial insurance
  • Novo Nordisk, capping copays at $99 for those with no insurance or with commercial insurance
  • Sanofi, capping copays at $99 for those without prescription medication insurance
  • Mannkind, capping copays at $15 for some of those with commercial insurance

Unfortunately, copay cards are typically not available for those insured through Medicaid or Medicare. Use the tool from the Partnership for Prescription Assistance to search in one place for discount programs and copay cards you qualify for here. Please be aware that you will need to search by brand name (i.e. Humalog, Novolog), not just “insulin.”

Get R & NPH Human Insulins – Standard out of Pocket Cost $25-$40 per Vial

R (Regular) and N (NPH) human insulins are available over-the-counter in 49 states and cost much less ($25-$40 per vial at Walmart) than analog insulins such Novolog, Humalog, Lantus, or Basaglar. They also work differently than analog insulins – they start working and peak at different times – but in an emergency situation can be a resource. Speak with the pharmacist or your healthcare provider if possible before changing your regimen and keep a very close eye on your blood sugar levels while using R & N insulin.

Research Available Biosimilar (Generic) Insulins

The biosimilar insulin market is changing rapidly as the FDA adopts new regulatory pathways to more efficiently approve interchangeable insulins that may be available for a lower price. Ask your healthcare provider for the most up-to-date options for you. A few options available are:

  • A generic version of Humalog — Insulin Lispro — is available at pharmacies in the U.S. for $137.35 per vial and $265.20 for a package of five KwikPens (50% the price of Humalog.) If you have a prescription for Humalog, you do not need an additional prescription for Lispro; your pharmacist will be able to substitute the cheaper option. Insulin Lispro is not currently covered by insurance.
  • Authorized generic versions of NovoLog and NovoLog Mix at 50% list price are stocked at the wholesaler level. People can order them at the pharmacy and they’ll be available for pick up in 1-3 business days

If you have enough insulin to last you a few days, but need to figure out where to get a more reliable, consistent supply, visit our Get Insulin page to find further resources.

Source: diabetesdaily.com

Patient Advocate Speaks Out on Eli Lilly’s Lowered Prices

By Madelyn Corwin

On April 7, 2020, Eli Lilly announced it would be selling its insulin to select patients for $35/month. This covers the uninsured and people with high deductibles. While myself and the entire diabetes community are happy lives will be saved through this news, we are not going to commend Eli Lilly for doing what they could have and should have done a decade ago.

We have already lost lives from rationing insulin, people have lost their vision, their limbs, their college savings accounts, their cars, their homes and so much more. People have literally chosen not to marry the love of their life just because they want to remain on Medicaid for their insulin. People have turned to the black market to buy insulin for years because of Eli Lilly, Novo Nordisk, and Sanofi’s price gouging. We can never get those lives back, those homes back, or people’s eyesight back. No amount of money or affordable insulin can fix the irreparable damage that has been done by the big 3 insulin manufacturers.

Madelyn Corwin, advocate for affordable insulin

This is not to say I’m mad about the $35 announcement. You have to understand where thousands of insulin4all advocates are coming from right now. Many advocates have made unthinkable sacrifices just to be able to pay that bill at the pharmacy counter so they can live to see tomorrow. People have skipped meals for days and worked out to the point of injuring themselves to bring their blood sugar down because they didn’t have enough money for more insulin. Many have rationed and been put in the hospital for DKA, only then to receive an even larger medical bill that they cannot pay, all at the hand of companies like Eli Lilly.

While the end goal is obviously and will always be affordable and accessible insulin for every person on this planet, we will not praise any manufacturer for doing the right thing after they’ve done the worst thing possible for years. It’s like when a country starts a senseless war and then ends it ten years later. Like, alright. Thanks, I guess. You profited, I guess. But the money paid to that senseless war by citizens is now gone and lives on both sides are also gone. So, I guess you did the right thing by ending the war, but why were we even there to begin with? And now, there is no way to repair the damage. So now, we will hold X country accountable forever for the lives and money lost, and this will be in the history books. This analogy works well with this $35 insulin issue.

There will always be an ulterior motive to these types of things, especially when Eli Lilly and other insulin manufacturers have pushed against patient advocates when trying to get emergency insulin access bills passed in their states (Alec Smith Emergency Insulin Act). These manufacturers send money to every politician they can possibly get to take their checks – yes, that includes the state level as well – so do your research. Here is a list of groups Eli Lilly has given money to. A big reason bills cannot get passed quickly or get passed at all is because there are many insulin price gouging lobbyists standing in the way. Why would Lilly suddenly lower the price when they spend millions lobbying our politicians? Why would they do this when they jump through patent loopholes (evergreening). Why would they be continuously paying off anyone trying to make a cheaper generic? Something does not add up.

cost of type 1 diabetes infographic

Infographic: T1DInternational.com

I may be pessimistic, but personally I do not and will never trust any insulin manufacturer after what they have done. I know a lot of people do not understand the capacity of the insulin4all movement, but it’s more than the t-shirts and social media posts. A great deal of patient advocates are working extremely hard every single day to get the insulin price-gouging story heard. There are hundreds of advocates interviewed by large news networks annually. These advocates have built personal relationships with their representatives and advocates that spend hours a day on social media trying to make a difference.

Insulin manufacturers have seen this; they’ve seen the uproar. They know we exist, and they know we are angry. They’ve known this for the last six or so years, yet they have done nothing. In fact, they mock us, and they pay off politicians to push their big pharma narrative. Common example: “Insulin has to be priced at $300 for research and development.” We’ve all heard it from some politician who happily accepts thousands of dollars from an insulin manufacturer.

Eli Lilly CEO David Ricks has even laughed at the question of affordable insulin and pushed the blame onto insurance companies and PBMs. While advocates are 100% aware that insurance companies and PBMs also play a large role in what the price of insulin is in the USA (you know, since they all profit off of our struggle at the pharmacy counter), he has twisted the narrative to make Lilly look like the good guy.

Lilly does this frequently; it’s probably in their training manuals by now. They gaslight patients and try to make it look like we’re the ones who don’t know what’s going on. Don’t fall for it. This is classic insulin manufacturer PR, they’ve been doing it for years. They love to push the blame elsewhere when in reality, those are the people they happily work with and write up their contracts with, all so they can make billion-dollar profits. In reality, they can just lower the price. They just proved that to us on April 7, 2020. Again, this should show you this company cannot be trusted and you should rely on your own personal, unbiased research.

On a recent conference call (March 16, 2020), Diabetes Connections with Stacey Simms got on with Andy Vickery at Eli Lilly. Andy is on the Lilly Diabetes Insulin Team (skip to 3:00 to hear the question and answer). Stacey asks Vickery, “In a time of really what is very much uncertainty, understanding that people with diabetes cannot live without insulin, why not be a hero in this space? And say right now that Lilly will cut the price of insulin to $25 or $35? Why not let people fill prescriptions for what they are written? For a price that would obviously help people around this country feel better about the one thing that they are… devastatingly worried about?”

Vickery responds, “I appreciate the frustration… If we cut that price, could that disrupt the supply to our other supply channel partners… We have contracts in place with them for a certain price. It would go beyond our ability to cut that price. We would have to renegotiate with them… We are constantly looking at the things we can be doing at this time…” He continues on to talk about their authorized generics.

Let’s take a look at how he also, like David Ricks, pushes blame onto PBMs and insurance companies while taking no responsibility at all for their role in all of this. He says he would have to renegotiate with PBMs and wholesalers. This is quite funny because that means if they lowered the price of insulin to $35, then they got everyone in their supply chain to agree on that. Why didn’t they get everyone to agree and play nice in 2012 when this became a devastating price for Americans to have to pay? Why didn’t they do this after we lost our first life to insulin rationing? Because they enjoyed the profit they were making and felt no guilt. There will always be an ulterior motive with these people.

There is also always a “fine print” to these copay cards. If you’ve ever used a patient assistance program, there’s a good chance you know what I’m talking about. Diabetes advocates are still doing research and looking for answers from Lilly reps regarding the terms and conditions. When does this end? How much can it be used? Is there a maximum amount, like with all of their other copay cards? As far as it looks right now, this program could be maxed out at a $7,500-annual limit (so, it’s good for less than a year of insulin for the average patient). Laura Marston, an incredible diabetes insulin4all advocate and lawyer has been compiling this information for us and will provide us with more info as she receives it. Again, I am looking for further confirmation for this and we have people searching high and low for the extra terms and conditions.

[UPDATE: Laura has done some more investigating on the situation, “It’s a limit on the difference between retail price ($325 times number of insulin vials) and $35 if you’re uninsured. If you’re insured, it’s the difference between your copay and $35.” We have still not seen official terms and conditions released by Eli Lilly.]

To close off this article, I decided to reach out to a few of my friends with diabetes who have struggled to get their insulin since their diagnosis and people who lost family members with diabetes to insulin rationing. If you are still struggling to understand why people will never commend insulin manufacturers for making bare minimum decisions, read through these:

“I believe this is once again another PR stunt. We have seen them do this type of thing several times over the past few years when pressure gets put upon them. If it was so easy for them to lower the price during this time of a pandemic, why did they not lower it years ago when people were crying out for help, people online begging for assistance, people like my son Alec who died because he could not afford his insulin. I want to know why now? Why after meeting with Mike Mason and sharing my story of how Alec died and many others stepping forward and sharing their stories. How long is this price going to be in effect for? How are they going to transition people from paying $35 now to $350 when this crisis improves?”

– Nicole Smith-Holt, who lost her son to insulin rationing in 2017.

 

“So I had to purchase out of pocket on multiple occasions. Usually, at fault of my insurance company (which would also be the fault of Lilly considering the contracts they write up and agree on with them), but again, we know it shouldn’t come to that. First time, I broke my last bottle. I was still 10 days from refill through insurance. I had to pay out of pocket, $280 for a vial. Second time, my insurance changed and told me I could only get Novolog covered, but I only had a prescription for Humalog. My doctor’s office wasn’t open and able to get me a prescription, so I had to pay the list price out of pocket again with the Humalog script I had on file (I would’ve died if I didn’t get it). Third, was because they forced an RX required on the box, I didn’t have a prescription, and I was running low on Humalog. I was out on tour for a whole month and running on my last pump fill up on my flight home. My flight was delayed overnight, and I was about to run out of insulin within the next 4-5 hours. With no prescription and no one up at 2 AM to get me one, I had to go to the ER and have them fill my pump, which took 3 hours of waiting and a bill of $550 for 100 units of insulin. Thanks, Lilly.”

– Ryan Ank

 

“I think it’s great that they’re doing this because people really need all the help they can get right now. Eli Lilly has been the leader of everything insulin-related. This means they gouged prices, and the other pharma companies followed. They lowered prices, albeit temporarily, so the others might follow. My anger stems from this, proving they could have lowered the prices at any time. So many people died from insulin rationing. Their deaths could have been prevented. So many lives cut short. Lilly’s responses are always R&D, but this $35 cap is proof of their lies and greed.”

– Nicole Hood, who lost her son to insulin rationing in 2018.

Source: diabetesdaily.com

Time Flies! Don’t Wait to Use Your Year-End Insurance Benefits on a New Insulin Pump

Time for a new insulin pump? Regardless of the time of year, with the t:slim X2™ insulin pump, you won’t need to replace it when the next big features arrive. Stacey Simms shares how using your year-end insurance benefits can be your best option to pay less.
Source: diabetesdaily.com

The High Cost of Priming Insulin Pens

This content originally appeared on Diabetes Stories. Republished with permission.The cost of insulin has skyrocketed in the past several years. But there’s another costly wastage no one is talking about. And that’s the two units of insulin you shoot into the air to prime your insulin pen. More about this below. Regards the cost of insulin […]
Source: diabetesdaily.com

Should People With Type 2 Diabetes Consider this Cheaper Insulin?

With analog insulin costing patients a great deal, should those with type 2 diabetes consider older but cheaper human insulins like R and NPH? A recent study looked at how blood sugar management was affected by this switch in older adults with type 2 diabetes. Analog insulins include brands such as Humalog, Novolog, and Apidra, […]
Source: diabetesdaily.com

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