Tackling Carbs with Tech

Many people who live with diabetes avidly avoid eating carbohydrates, as historically speaking, it has been notoriously difficult to cover carbohydrates appropriately with exogenous insulins. But with access to better, faster insulins and the uptick in the use of patient-friendly technology, things are changing, and people’s diets (and their feelings of freedom) have expanded more than ever. Here are the best tech-friendly hacks to tackle the carbohydrate conundrum.

MyNetDiary

This popular app has a searchable database with nearly a million food entries for people to access and look up carbohydrate counts on the go. The company also has a separate Diabetes app that allows users to track blood glucose levels, HbA1c results, and insulin doses, to track their progress over time. If you’re looking to lose weight, MyNetDiary can create a diet plan to meet your needs. You never have to feel restricted when eating meals with family or friends, having all your carbohydrate counting needs right at your fingertips.

Photo credit: GreaterGoods

GreaterGoods Nourish Digital Scale

This food scale is a game changer for those who cook with lots of fresh produce, where carbohydrate counts can vary quite a bit. This scale lets the user view nutrition facts for over 2,000 foods in the scale’s built-in database, and create up to 99 more custom entries. Measure individual ingredients, track full meals, and calculate daily carbohydrate intake much easier with this digital scale.

InPen

This revolutionary device is the only FDA-approved smart pen insulin system that helps prevent users from “stacking” their insulin doses and take the right amount of insulin at the right time. This device works in tandem with a phone app, where users can track insulin on board/active insulin, personalize your doses, sync with continuous glucose monitor (CGM) or glucometer data, and share reports with others. The pen itself is compatible with Humalog, Novolog, and Fiasp, and will even dose in half units. Eating carbohydrates has traditionally been much harder on multiple daily injections, but advancements such as the InPen are making strides to make life much easier for people with diabetes.

Use Alternative Pump Boluses

If you are an insulin pump user, dosing for a high carbohydrate meal can also be difficult, especially if the meal also has a moderate amount of protein and fat (which can delay the absorption of the glucose in the meal). To handle that, try opting for a combination bolus (a.k.a. Combo Bolus or Dual Wave Bolus,  for Animas or Medtronic users, respectively; Omnipod, Tandem t:slim users will use “Extended Bolus”). This is a hybrid delivery mode: a specified portion of the total insulin bolus is delivered upfront, as a normal bolus, while the rest is delivered over a specified period of time as an extended/square wave bolus.

For example, given a 12U dose delivered as a 60/40 combination/square wave bolus over 3 hours: 60% of the total dose (7.2U) will be delivered within seconds of pressing the “deliver” button; the remaining 40% (4.8U) will be delivered equally every few minutes over the next three hours. The result is an initial dose to cover faster-digesting foods, plus an extended amount of insulin action to deal with the slower-digesting foods (which tend to be fattier or have more protein), and to prevent postprandial spikes in blood glucose. Utilizing these settings can be extremely helpful when you’re eating foods like pizza, pasta, Chinese food, Mexican food, or ice cream. Always consult with your diabetes healthcare provider before making any changes to your dosing routine.

Dexcom CLARITY Diabetes Management Software

Photo credit: Dexcom

Dexcom Clarity App

This software can be helpful for patients already using the Dexcom continuous glucose monitoring system, but are wanting to track and change problematic patterns in their blood glucose. This app lets you set target goals for your blood sugars, will track time-in-range, detects patterns of highs and lows and will alert you to them, and will even give the user a predicted HbA1c result. You can also choose to share your data with your health clinic to make changes to your insulin routine or insulin to carbohydrate ratio in real time, and to really find what will work best for you for optimal management.

Living with diabetes is never easy, but thankfully technology has made counting carbohydrates and eating easier than ever before. What apps or tech has helped you to navigate food, eating, and counting carbohydrates? What’s worked best and what hasn’t? Share this post and comment below; we love hearing from our readers!

Source: diabetesdaily.com

Diabetes and Reality TV, with Marcus Lacour from Say I Do

By Alexi Melvin

Netflix’s “Say I Do” is a reality show about surprise dream weddings, but its first episode showcased something we don’t often see in reality TV – type 1 diabetes (T1D). In the episode, Marcus LaCour was given the chance to surprise his wife Tiffany with a magnificent wedding do-over.

Alongside planning and logistics, Marcus also spoke candidly about his life with type 1 diabetes, spurred by a conversation around how wedding catering decisions needed to take into account the food choices he makes to help manage his blood sugar levels. We caught up with Marcus to chat about his experience on the show, how he handled presenting his type 1 diabetes to the world, and where he and his family are now.

Did you ever imagine that you’d be on a TV show on Netflix?

I definitely didn’t expect it. It’s one of those things where you’re like, you know what? If it happens great, if it doesn’t, it’s great too. I don’t think it dawned on me really until we started shooting. Once we started filming, I was like, “Oh, this is it. This is legit.”

When you were talking about your T1D on the show, it came across so well. Is that something you discussed beforehand with the producers? Did you preface anything or was it organic?

It was organic. We literally were just sitting and talking about it. The subject of food came up and early on I told them, “Hey, I’m a type 1 diabetic.” We were just having a conversation of, “Hey, how’s this, how’s that? How did that happen? How were you diagnosed?” Literally, just conversation flowed from there. In my honest opinion, it was one of the most genuine conversations I’ve had with anyone about my condition, just because it was in a room and in the area where there was an open space where I could tell them everything I needed to tell them about the condition.

You touched on how much your wife did for you when you had a situation where you lost your healthcare – the rationing of food and things like that. Did that also include rationing of insulin? Were you having issues with getting supplies?

I was. I was getting samples from my doctor’s office at one point. You know when you’re trying to ration insulin or trying to pick the insulin you can afford, it’s not as effective as what you’re used to. I was getting the regular 70/30 mix insulin pens. I kept bottoming out throughout random times of the day. I was used to taking NovoLog but [at one point, my doctor] didn’t have any NovoLog samples. So I was literally just getting whatever he had.

When [my doctor] did get the NovoLog pens, I was using those thinking, okay, he should have some more samples. Well, there was a time where he didn’t, and that time for about a month maybe, we’ll say three weeks, I was rationing my insulin, because I’m trying to make sure that if I do go high, I have enough to cover the high. If I go low, just [having food] to eat, but more importantly, what you need on a daily basis [to keep your levels stable].

One day, the doc called and said they didn’t have any samples. I was down in my last 10 units. So for about an extra two and a half, almost three weeks, I was rationing 10 units of insulin.

When did that situation start getting better for you?

I ended up getting a loan from my boss because at the time I started a new position and he was like, “I don’t want to see you suffer.” At the time, NovoLog Flex Pens were $250 for the pack. So he gave me a check for $250 and said, “Hey, go get your meds.” So that was how I got through that. Then somehow, by some sort of miracle, after that pack ended, my doctor, all of a sudden, got samples again.

What is your management routine like now?

It’s the Omnipod right now. I’ve got better insurance that covers the pods altogether. It’s still an adjustment for me though, because I’m used to not having a PDM. Before, [when] I was on the injections, it was, wake up, take your long term, and then just carry the Humalog pen on me at all times. Then with the pump, [if] we’re going to work out, I forget to suspend my insulin flow. Or if the site doesn’t take, having to double check and make sure blood sugars aren’t really high. So it’s a couple of different things, but it’s not bad. It’s still an adjustment though.

Do you feel you prefer the MDI or do you feel the pump ultimately is going to be better?

I’m already seeing changes in my numbers, just from average standpoint. On the shots, the lowest my A1C was, or I could get it, with 6.9, 6.8, but now I’m seeing, that even though there are days where I may be high because the pod didn’t take, or I may run low, those days are few and far between, so I’m running normal on a lot more of a regular basis.

Do you use a Continuous Glucose Monitor (CGM)?

I don’t. It looks we have to go four months without a CGM and track those numbers before insurance will approve it.

In terms of your diet, on the show, you talked about how you’re conscious of what foods are going to spike your blood sugar. Is there a specific diet you to stick to? Are there certain foods you prefer or are you getting more flexible with it because of the pump?

I am still a very conscious eater. I prefer to eat clean. Everything has to have a balance. Now I know with the pump, you have that freedom to literally eat whatever you want. But for me, when I was diagnosed, I didn’t have that option. So, it was literally sticking to that diet, sticking to that regimen. Everything has to have a fresh fruit or fresh vegetable, [there] has to be a starch. There has to be a grain and there has to be a protein. That’s the only way that I know.

I came across a comment online that said, “Well, diabetics can eat whatever they want.” It’s very true. But for me, I don’t want to run that risk. I think I’ve always done something whenever I got a new insulin, when I got my Humalog, I wanted to make sure it worked. So I got a peanut butter Twix, took it to cover it, just to see what it would do. When I got my pump, I had a chocolate chip cookie just to make sure it was working. It would work, but overall, my diet is consistent. I prefer to eat clean. It’s just because I know these things aren’t going to have a whole lot of impact on my blood sugar.

I saw on Instagram that your daughter’s been learning more about your T1D management. How’s that going?

It’s going well honestly. Before, when I was taking my shot, it was just, “Hey, Daddy’s got to take his insulin,” or, “Daddy’s got to check his blood sugar.” So she’d always been curious about it. Then one day I had to change my pod. “Are you changing your pod, Daddy?” “Yeah, Daddy’s changing his pod. you want to watch?” “Yeah, I want to watch.” So she came in and got hands on. I always want to make her aware just in case something happens. If my blood sugar goes low and I’m unresponsive, or if I’m too low and I can’t get up to get anything, I want to make sure she’s aware to say, “Oh, Daddy’s not feeling well. Daddy he needs something to eat.” Or, “Something’s going on. Let me tell Mommy.” I always want to make sure she’s aware of what my condition is, not to scare her, but to the point where she can be reactive.

Who did you have as a support system when you were first diagnosed?

My mom was my biggest supporter. I didn’t keep it from my friends, but I felt they wouldn’t be able to understand. They were used to me just being able to get up and do whatever. If we wanted to play football, it was get up and do it without having to worry about anything. They knew I had type 1 diabetes, but they didn’t know the entire scope of what it meant to take care of that condition. So it was my mom. Then over time, my friends started to get a little bit more of an understanding of it. So my friends would ask, “Hey, what’s your blood sugar like? Are you OK?” Or if I was going to the gym to work out with some of my buddies, “Hey, don’t forget your meter.” Or I’d always bring my meter with me and I’d have to check in the middle of work out, see either I’m high or low, or just to figure out where I was at. They would always ask, so they held me accountable in that regard.

Have you been getting a lot of people in the type 1 community reaching out on Instagram or social media?

I’ve gotten that. It’s always refreshing because [they’re] like, “Thank you for representing and letting the world know about your condition.” Well, it’s a part of me. I’d be foolish to hide it, like, “I don’t have a condition.”

Had you been involved in the type 1 community at all before appearing on Say I Do?

Not necessarily. I’ve always wanted to though. I’ve been at this for almost 20 years, it’ll be 20 years in November. When I first got diagnosed, there weren’t a lot of support groups. There weren’t very many places for me to go where I could vent or even if I had high blood sugars or even lows, how to combat that and deal with those. But now times have changed. I would love to be able to get out and talk to people about what our condition is and how to manage it effectively.

What’s next for you and your family?

Honestly, I am not sure. I work for a Children’s Hospital down here, so I recruit for them and it’s just more or less just going with everything at this point, just laying back and enjoying the ride while we have it.

Do you think you’re going to seek out more TV opportunities?

To be honest, I don’t know. This is all new. It’s all new to both of us. If more opportunities come, then yeah. Absolutely. But it really just depends on what comes down the pipes. I think the ultimate goal would be just for us to just enjoy this and see where it takes us.

Source: diabetesdaily.com

REVIEW: Companion Medical’s InPen, A Smart Delivery System

Companion Medical’s smart insulin delivery, the InPen, is a reusable injector pen plus user-friendly mobile device which allows individuals to improve their diabetes management. I choose multiple daily injections (MDI) over a pump for various reasons, but I cannot deny that a pump allows for more precise calculations. With InPen, people on multiple daily injections can achieve the same accuracy plus so much more!

What Is It?

The InPen is a reusable injector pen that not only helps you calculate your doses but also keeps a log of insulin data for up to a year. The InPen connects, via Bluetooth, to the smartphone app, and keeps track of all your insulin deliveries.

InPen is now approved for all ages (7 and over, or under the supervision of an adult), who are insulin-dependent. The pen can deliver between .5 units to 30 units of insulin, dialed in half-unit increments. The pen is compatible with the Lily Humalog, Novo Nordisk Novolog and Fiasp U-100 3.0 ml insulin cartridges.

InPen is compatible with all Apple iOS devices that support iOS 10 or greater. It is also compatible with Android (more info about compatibility here).

What Does It Do?

I made sure to use this pen for about a month before writing my review. I am in awe of how easy this pen makes my management. Up to now, to be quite frank, I am guilty of a lot of “WAGS” (wild a** guesses) and then winding up too high or too low. I also really never kept tabs on when my last insulin dose was, so would find myself stacking quite often. Thanks to InPen, a lot of this carelessness has been eliminated. Here are all the amazing things it can do:

1. Insulin delivery information

The InPen connects to the app via Bluetooth which allows the app to store your insulin delivery information and shows you how much insulin you have taken and how much you have on board. There have been so many times when I would correct a high, not realizing I still had insulin on board, which led to episodes of hypoglycemia. As you can see here, your information appears in real time from your lock screen.

InPen Screenshot 1

Screenshot from Companion Medical

2. Built-in calculator

The InPen has a built-in calculator to help you get the most accurate dose possible. Your physician enters your settings, and it will give a recommendation on how much to dose. It takes into account your previous insulin delivery, your current blood sugar and the number of carbs you are eating. Since I have been using this feature, my blood sugars have improved greatly.

InPen Screenshot 2

Screenshot from Companion Medical

3. Reminders

It also has a reminder to take your long-lasting insulin. There have been so many times when I can’t remember if I took my Tresiba. I know this is a common problem for people on daily injections. This takes the burden off of the individual and has proven to be one of my favorite features.

InPen Screenshot 3

Photo credit: Companion Medical

4. Reports

The InPen generates reports that you can share with your healthcare team. These comprehensive reports will allow for easier decisions regarding changes to your diabetes management.

Screenshot from Companion Medical

5. Temperature alerts

The InPen comes complete with temperature alerts! It will notify you anytime your pen is in temperatures too hot or too cold which could make your insulin ineffective. This will come in handy during my next vacation or even if I leave my bag in the car for too long.

6. Syncing to Dexcom

InPen can sync up to the Dexcom continuous glucose monitor, via the Health app. This allows you to see your continuous glucose monitor graph on your logbook and reporting feature of the app.

Screenshot from Companion Medical

How Can I Get the InPen?

Many commercial insurance companies cover InPen, you can fill out this form and a representative will contact you about your copay. They also have a copay assistance program.  Commercially insured InPen customers will not have to pay more than $35 dollars a year which is a small price for better control.

Conclusion

I think InPen is a game-changer for anyone on multiple daily injections. With all of the capabilities the InPen offers, I can achieve better blood sugar numbers. I feel more in control of my diabetes because now I am confident that I am administering the right doses. I am also avoiding stacking insulin, which means fewer blood sugar roller coasters, and now I also have reminders to take my long-lasting insulin.

InPen can also help empower children to make better choices and manage their own diabetes. You can even sync two different pens if a child wanted to leave one pen at school and one at home.

Using InPen has helped me take back some control of my diabetes. It allows me to feel more in control and allows me to spend less time thinking about my condition. I can’t imagine going back to MDI without InPen in my toolbox and highly recommend this to anyone else who prefers injections over the pump.

Source: diabetesdaily.com

Is Healthcare Provider Knowledge of Diabetes Lacking?

People’s experiences with healthcare providers can vary widely. When it comes to living with diabetes, many people expect that their healthcare providers, even if they’re not specialists, will be at least somewhat knowledgeable about their health condition. Many have found however, that while endocrinologists and diabetes education specialists tend to be more attuned to the ins and outs of diabetes management, even their knowledge can be outdated, while the knowledge of other providers, is sometimes starkly lacking.

Meanwhile, two informal polls in two separate diabetes social media groups, highlighted that over 85% of people with diabetes expect any healthcare provider (even if not a diabetes specialist) to have a basic working understanding of diabetes, at the very least the two major types and general treatment options.

Nevertheless, when the asked to share their own experiences, many reported a lot of confusion and uneducated statements about diabetes from various healthcare providers. The consensus during the crowdsourcing research tended to be “while we expect it, we do not routinely see it.”

We asked people to share some of the comments that they received about diabetes from healthcare providers. Here are some surprising responses and stories to ponder:

“When did you have your insulin pump surgery?”

“Type 1 diabetes develops over 2-3 days, not months.”

“He was a big baby so clearly he’s was a diabetic when he came out.”

“You will kill your child with this low carb nonsense… I will not stand by and watch you do that… I’m sure one of the other doctors will call CPS with this.”

“Diabetics like you are only allowed 4 eggs a week. Period.”

“You should eat more carbs, it’ll stabilize your blood sugars.”

“Do not correct under 13 mmol/L [~234 mg/dL].”

“You need to eat a minimum of 45 g carbs per meal.”

“If you don’t like seeing high fasting blood sugar numbers in the morning, don’t test your blood sugar then.”

“You will likely be dead from diabetes by age 30. If by some miracle you are still alive, you will be blind, on kidney dialysis, and in a wheelchair due to amputations.”

“Are you sure you have type 1?”

“It’s probably best if you stop sports and strenuous exercise.”

“If you go low-carb, you’re going to kill yourself.”

“An A1c below 6.5 is dangerous.”

“You don’t have to bolus for corn or peas, they are freebies.”

“Your insides are destroyed from having diabetes so long.”

One woman shared the following story:

“When my daughter was diagnosed at age 2 (I had diagnosed her and had to fight with her pediatrician to test her blood, because her urine test was normal. We already ate low-carb, so I had to feed her a high-carb meal and take her back and storm the pediatrician’s office and force them to give her a test, which came back at around 500, at which point they finally sent us to the ER). After diagnosis, the endo told us she needed at least 100 g carbs for each meal (at age 2!!!), plus 30–50 g snacks in between meals. Insanity! They had her on massive amounts of Lantus, NPH, and Novolog. They told me to feed her lots of ice cream before bed every night to hold her steady at around 200, which was a great night-time number for a kid that age! I swear I still have PTSD from that whole experience! Nightmare! I had to fight with them every step of the way!”

Such stories amassed very quickly, with many nodding their heads at having similar experiences. Is there perhaps a gap in basic diabetes education, in particular for non-specialists?

Image credit: Haidee Merritt. Republished with permission. Please visit her Etsy store for more original work and gifts. 

Almost all will likely agree – while we cannot expect every healthcare provider to be fully attuned to the latest developments in diabetes diagnostics and treatment, an accurate knowledge of the basics should be a requirement – especially with the high number of diabetes diagnoses, and undiagnosed or misdiagnosed patients.

Moreover, ensuring better understanding of diabetes and its management across the board, for all providers, is highly likely to improve patient outcomes in various situations, including recovery from illness and surgery, and more effective prevention of numerous diabetes-associated complications.

***

What are your thoughts on this issue? Have you ever had a surprising conversation about diabetes with a healthcare provider?

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

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