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

STUDY: How COVID-19 Is Affecting People with Diabetes

The COVID-19 pandemic is greatly affecting all of us, on an unprecedented and global scale. We recently utilized our Thrivable Insights Panel, comprised of almost 20,000 people living with or caring for someone with diabetes, to evaluate how the diabetes community is affected.

The infographic below provides a brief overview of data collected in the initial survey to gauge people’s perceptions, concerns, measures they are taking to prepare and protect themselves, and more. Stay tuned for a detailed data report, and more to come from our continued research efforts on COVID-19.

Want to make a difference? Join the Thrivable Insights research panel.

Also, please join our COVID-19-specific research efforts here.

Made with Visme Infographic Maker

Source: diabetesdaily.com

Managing the Emotional Toll of Diabetes and COVID-19

The world as we know it has changed due to COVID-19, the illness caused by the novel coronavirus. The number of businesses closing, people being quarantined (mandatorily or voluntarily), laws changing to contain the spread of the disease in the United States, cities invoking curfews and travel bans, and people dying is changing by the hour. If it suddenly feels as though you traveled through time and landed in the zombie apocalypse, you’re not alone.

Add to that the layered anxiety and worry that comes with having diabetes in the time of an unmitigated infectious disease (of global pandemic proportions) disaster, and it can become too much to manage. It can be a complicated mix of concern for the world, the risk to yourself, and how you feel about the risk to loved ones in an environment of uncertainties and unknown unknowns. Here are our top ways to manage the stress:

Know the Facts

Having diabetes doesn’t necessarily put you at any higher risk for getting COVID-19, but you can be susceptible to more severe complications if you acquire the disease. Do not panic. Do not get sucked down into the rabbit hole of myths and conspiracy theories. Learn the facts from reputable sources only. Following advice from The World Health Organization and the CDC are two good places to start. You may have increased anxiety around diabetes and coronavirus (that’s expected and warranted), but unnecessary stress doesn’t help, either.

Disconnect

Most of us are working from home these days, and while that’s an excellent way to help contain the spread of disease and protect people with preexisting conditions like diabetes, it’s also keeping many people glued to their screens for most of the day, and that means, glued to the news. Get away from your computer screen, the news, Twitter, and the chaos of Facebook for some time each day (walks outside are excellent, now that the spring weather is upon us!). Set limits on how much you watch the news (it’s crucial to stay informed, it’s not so crucial to watch CNN for 7 hours straight). Or better yet, limit screen time to evenings only.

Infographic by The World Health Organization

Be Prepared, Not Panicked

There’s only so much you can do, but make sure you do it! Practice proper social distancing, hand washing techniques, stay home if you’re sick, and avoid crowded places, sick people, and high traffic areas (airports, etc.).

If you can, stock up on two weeks’ worth of food, toiletries, and medication, and make arrangements to work from home, if able. It’s understandable that most people cannot afford to stock up on fresh food and medication. More affordable, shelf-stable food items that can go a long way include canned goods and frozen vegetables, and dried beans and rice. That being said, there’s no need to necessarily hoard grocery items, as grocery stores do not have any supply-chain issues and hoarding for yourself may cause deprivation for others (although, of course, make sure you have more than enough supplies to treat low blood sugar at home). Additionally, check out our advice for obtaining additional diabetes supplies without breaking your budget during this crisis.

If your job requires in-person time (if you work in the service industry, are a healthcare worker, provide city services such as garbage collection or sanitation, or your boss simply won’t budge on a work from home arrangement), try and maintain 6 feet distance between you and others, ask for latex gloves if you work in a grocery store or are a mail carrier and touch lots of objects (be sure you know the proper way to use them!), and avoid standing near sick people. Also, wash your hands thoroughly and often. If you can find it, hand sanitizer also is extremely helpful when on the job if running water and soap aren’t readily available. COVID-19 is caused by a novel Coronavirus, meaning it’s never been seen before, and the epidemiological characteristics of the spread of the disease are still being uncovered. It’s best to use extreme caution. It’s recently been revealed that it *may* be airborne, although studies are conflicting.

After you’ve adequately prepared, don’t continue to panic. Falling to hysteria won’t help anyone, but being prepared can give you peace of mind if you’re forced to be at home for a while.

How to Protect Others from Getting Sick - Coronavirus 2

Infographic by The World Health Organization

Move Your Body

Exercise is one of the main ways to decrease stress, and just because many cities are closing down their gyms, doesn’t mean you can’t move your body. Aim for a moderate activity for at least 30 minutes every single day. Warming weather can mean outdoor runs or walks, bike rides or hikes, and YouTube is an excellent resource for yoga and meditation classes and various cardio routines. Check out this article for even more ideas! You may not be able to control a lot right now, but moving your body is one concrete thing you can do to feel better.

Create Structure

With school closings and changing work routines, nothing feels normal right now and that can cause a lot of anxiety. Try to create some sort of structured routine (small changes can make a big difference!). Wake up at your normal time, even if you don’t have a commute right now. Make your bed every morning. Shower. Put on pants (yes, some people need a reminder to change out of their PJs when working from home!). If you usually have Tuesday night pasta night, have your Tuesday night pasta night. Sticking to a routine is especially important if you have children at home and they’re not in school currently, but a routine is healthy for everyone.

Check in on Your People

Gathering in crowds is not recommended right now, per CDC guidelines, but that doesn’t mean you shouldn’t check in on your friends and family. Skype, FaceTime, or even good old-fashioned texts and phone calls are excellent ways to stay in touch with everyone. We’re all in this together, and reminding people that they aren’t alone is crucial right now for mental health and sanity.

Supporting loved ones amid covid-19 pandemic

Infographic by The World Health Organization

Do Something Tangible

When you take away social gathering, date nights out, going to the movies, playing mini-golf, going bowling, and your kids’ weekly ballet class, everything suddenly feels…digital. Do something tangible: clean out the garage you’ve been meaning to clean out for the past 2 years, go through your clothes for Goodwill donations, repaint and rearrange a room, learn how to knit, dig around in your garden, pull out the dusty Scrabble and Scattergories games from the basement and have a game night, master your grandma’s cornbread recipe–anything that is physical will benefit you tremendously, and help peel you away from the constant stream of anxiety-provoking news.

Eat Healthy

The whole world being on pause right now might have given you license to stress-eat ice cream every night last week, or pour one too many glasses of wine over the weekend, but keeping a healthy eating routine will fuel your body and make you feel better over the long run. What feels good in the moment isn’t always the best thing for us over the long haul, and making sure we’re drinking enough water, eating plenty of vegetables, and getting good sources of protein will sustain us much better than ice cream ever could (sorry to say!).

Allow Yourself Some Grace

The world isn’t operating at 100% right now, and so it’s okay that you aren’t, either. You haven’t been able to concentrate on your work emails at all? Haven’t had the motivation to cook an elaborate meal? Not feeling optimistic about the future? Give yourself some grace, and allow yourself to slow down and feel this moment. This is a global pandemic, and (hopefully only) a once-in-a-lifetime event. Things are not normal, and it’s unreasonable to expect yourself to pretend like everything’s okay. It’s okay to not be okay right now.

Know This Is Only Temporary

Everything is in extremes right now, and it’s foreign to many of us. Maybe you’ve had to cancel travel plans, maybe you’ve had to return home from a study abroad program early, or you’re missing out on a Broadway play. Maybe you’ve even postponed your wedding. These are not normal times, and things won’t always be like this. Eventually, you will be able to go to the movies again, go to concerts with large crowds and not worry, get dinners, go bowling and grab happy hour without a care, and when you do, you can toast to happiness and good health, and getting through this horrific time, together.

How are you coping emotionally during this difficult and complicated time in the world? Share this article to help a friend, and comment your thoughts below; we would love to hear them!

Source: diabetesdaily.com

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