$35 Insulin on Medicare Pilot: Is This the Beginning of Affordable Insulin for All?

On Tuesday, President Trump held a press conference announcing a new pilot program for seniors on Medicare that would cap the monthly co-payments of insulin to $35. The announcement was attended by senior executives of two main insulin manufacturers, Eli Lilly and Novo Nordisk, and staff from the American Diabetes Association, as well as the Surgeon General, Jerome Adams.

In typical Trump style, midway through his announcement, he proclaimed, “I don’t use insulin. Should I be? Huh? I never thought about it, but I know a lot of people are very badly affected.” While this comment has created a wave of groans and eye-rolls throughout the diabetes online community, the core of his message is more important: seniors in America will now be more able to comfortably afford their insulin.

For everyone on earth, insulin is a necessary hormone to live. People without diabetes produce insulin endogenously, whereas people with diabetes must take insulin exogenously. Without adequate access to affordable insulin, people with diabetes face serious complications, such as kidney failure, blindness, amputations, and premature death. Unfortunately, the rising costs of insulin over the past few decades have become a major barrier to appropriate management of diabetes. American seniors are some of the hardest hit by the rising costs, who are partially-retired or out of the workforce completely, often trying to survive on smaller, fixed-incomes.

Trump remarked, “Today I’m proud to announce that we have reached a breakthrough agreement to dramatically slash the out-of-pocket cost of insulin. You know what’s happened to insulin over the years, right? Through the roof.”

The pilot program will take effect starting in 2021, and would be part of the enhanced Medicare Part D Senior Savings Model, to which over 1,750 standalone Medicare Part D and Medicare Advantage plans have applied to participate in, according to the Centers for Medicare and Medicaid Services (CMS).

s$35 Insulin on Medicare Pilot

Photo credit: Adobe Stock

This is a welcome respite from the high cost of insulin for American seniors on Medicare, who, despite being covered by health insurance, sometimes have to pay hundreds if not thousands of dollars for their monthly insulin prescriptions.

Despite the multitude of executive orders and policy decisions the Administration has made to chip away the Affordable Care Act, this enhancement of American’s largest healthcare social safety net was met with applause from seniors all across America, many of whom have cooled their support of the President since the beginning of the COVID-19 pandemic and our nation’s response to it. This is an excellent first step to ensuring that our aging Americans can afford the insulin they need to take care of themselves.

It is estimated that Medicare beneficiaries (generally Americans over the age of 65) who use insulin and join a plan participating in this pilot could see average savings of $446, or 66% for their insulin every year. The pilot is funded in part by insulin manufacturers who will pay $250 million in discounts over the five years of the pilot. There has been a positive response from Medicare Part D plans nationwide, and CMS predicts coverage in the pilot will be available in all 50 states, D.C., and Puerto Rico. Medicare beneficiaries will be able to enroll in a pilot-participating plan during traditional Medicare open enrollment, which is October 15th-December 7th, 2020, for Part D coverage that begins on January 1, 2021.

1 in 3 Medicare beneficiaries has diabetes, and over 3.3 million Medicare beneficiaries use one or more types of insulin, so this change isn’t insignificant. Out-of-pocket spending on insulin by seniors in Medicare Part D quadrupled between 2007 and 2016, from $236 million to $968 million, putting a harsh burden on millions.

Seema Verma, administrator of the Centers for Medicare and Medicaid Services said, “We think that this creates a foundation and a platform to fix some of the problems that we have in the Part D plan (of Medicare). It’s time for that program to be updated.”

While this is a great first step, the pilot is only slated to last for five years, and it will only apply to the Medicare population- generally, people living with diabetes who are 65 and older. This begs the bigger question: how do we afford our insulin before we are eligible for Medicare? How can we ever hope to make it to that point, if insulin is unaffordable every step of the way? Men with type 1 diabetes have an average life expectancy of 66 years, compared with 77 years among men without it. Women with type 1 diabetes have an average life expectancy of 68 years, compared with 81 years for those without diabetes. Realistically, this may not even help people who have diabetes for very long.

We can only hope that this initiative creates enough momentum for the federal government to start capping the actual price of insulin, for the other 7 million Americans who rely on it every day to survive.

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

Charlie Kimball and His Driving Force to Success

The COVID-19 outbreak presents unique challenges for those of us living with diabetes.  Charlie Kimball, a professional IndyCar driver and father of two and lives with type 1 diabetes. His sport (and job!) is now on hold, and he is home trying to manage his diabetes, eat healthily and stay fit, all the while adjusting to life as a family of four. Charlie and his wife just had a baby in March, amidst the COVID-19 pandemic. I thought it would be nice to talk to Charlie about how he is managing despite what is going on in the world.

Charlie, congrats on your new baby! And thank you for taking the time to talk to me!

How long have you been living with type 1 diabetes?

It’s hard to believe that I’ve been living with type 1 diabetes for 17 years. At age 22, my diagnosis felt devastating and I stopped racing mid-season, unsure of how I could possibly continue to pursue a career as a professional racecar driver.

Each year on October 16, when I celebrate my “diaversary” (that is, the anniversary of my diabetes diagnosis), I reflect on the support I’ve received from the diabetes community. They, along with my wife, my healthcare team and my IndyCar family, all play a role in how I navigate and manage my diabetes.

Did your diagnosis play into your choice of becoming a professional race car driver?

Although I was actively pursuing a career as a professional racecar driver before my diagnosis, I believe racing with diabetes empowers me to be an even better driver. Physically, I have become even more in tune with my body and more connected with my team since my diagnosis. I’ve also found it really rewarding to represent people living with diabetes as part of the Novo Nordisk Race with Insulin program to reinforce the idea that diabetes doesn’t have to stop you from following your dreams.

Charlie Kimball, A.J. Foyt Enterprises Chevrolet

What challenges did you face in this profession due to your type 1 diabetes?

At the time of my diagnosis, it was mid-season while I was racing in Europe and I took some time off to figure out blood sugar testing, insulin management, and how to get back on the track. Thanks to my amazing support system, I was back in a race car three months later and claimed a podium finish in my first race back.

When I decided to move back to the US and race in IndyLights (the feeder system to IndyCar), my endocrinologist, Dr. Anne Peters, met and worked with the IndyCar medical staff to create a plan to get me back behind the wheel.

With the recent news of the first person living with diabetes to be certified by the FAA for a First Class Medical, how great does it feel to know you are the first licensed driver in the history of IndyCar racing?

I first raced in go karts at nine years old and I come from a motorsports family. When I was first diagnosed, a friend helped me to put everything into perspective by pointing out that, while I’d need to manage my diabetes for the rest of my life, it was important – and possible – to get back behind the wheel. I’m really proud of my role as the first licensed driver with diabetes in the history of IndyCar racing, and I’ve never shied away from talking about living with type 1 diabetes. Now, I’m glad to see other drivers out there who are also living with diabetes on the track!

I know from my travels that there are incredible people with diabetes doing inspiring things all over the world. It never ceases to amaze me when I see people with diabetes following their dreams -– whether they are making history in their profession or they are simply accomplishing goals that they may not have considered possible, like running a half marathon

Photo credit: Charlie Kimball

When you heard the virus was picking up speed, what were your first thoughts? Fears? How did you prepare for staying at home?

We recently welcomed my son in March, so we were impacted by some of the same considerations new parents are facing during this time. But, when I held my baby boy for the first time, it was hard to think about anything else other than the love I had for my new family of four.

There have been a lot of changes over the last few weeks and while I’d love to be racing right now, this has been a good time to connect with my family, and an opportunity to plan for future races with both my healthcare and race teams.

Even though I am home, I am still committed to staying active, eating healthy and paying close attention to my blood sugar. Also, right now, a crucial part of my management plan, is making sure that I have enough medication at home and keeping track of when I need to reorder. Having a supply of insulin on hand is not a luxury. It’s a necessity, especially at this time. My partners at Novo Nordisk are working very hard to ensure patients still have access to their medicine. If anyone is having problems affording their medicine during this time, please visit NovoCare.com for information on how Novo Nordisk can help

I’m sure racing comes with a lot of stress and adrenaline. How do you recommend people handle unpredictable blood sugars due to the stress during this time?

Yes, you’re right, racing does come with a lot of stress and adrenaline. I manage that through careful planning every race weekend to ensure that my blood sugar remains in range. But everyone has their own stress and we all handle it differently. The everyday realities of work, family, and life inevitably create that, and I encourage everyone to just have a plan in place for all different situations.

As for our current situation, I’ve found that I’m handling it like everyone else, by washing my hands often and practicing social distancing. It’s been important for me to stay in constant contact with my healthcare team, so they can help me to adjust my diabetes management routine appropriately.

I keep a close eye on my continuous glucose monitoring (CGM) and that allows me to make small adjustments throughout the day if needed. I also take time to exercise, laugh with my wife and children, and connect with people who matter to me – albeit virtually these days. This all helps reduce that stress.

Charlie Kimball, A.J. Foyt Enterprises Chevrolet

How do you plan ahead for a race so that your blood sugars won’t get in the way?

I work very closely with my healthcare team on my plan for each race. We track everything from my workouts that week to my meal before I get on the track. Using this data to make a plan comes naturally to me – it’s the same way I approach driving a race car. On the track, my race engineers, strategists, and I utilize around 50-70 sensors that feed into the central brain of my car. They are calibrated so that I can monitor every detail during a race – think g-force, speed, throttle, RPM, tire pressure – and, importantly, my blood sugar levels. My blood sugar levels from my CGM are tracked and displayed on a custom screen that sits on my steering wheel and is relayed back to my team in the pit lane so that we can make adjustments as needed.

With IndyCar racing on hold, what are you doing to stay active and healthy? Both mind and body?

I’ve partnered with my team to develop a modified workout routine while I’m at home. While I’m not racing, it’s still so important for me to stay in shape so I can do my best when I’m back on the track. Beyond staying active, I’m focused on eating nutrient-rich foods, tracking my blood sugar levels, and taking my medication.

Technology has always been an important part of my diabetes management. With it, I’m able to monitor calories, carbs, hydration, and of course, my blood sugar. Lately, while I’m at home, using my CGM has been a helpful way to watch my blood sugar in real time throughout the day. For me, keeping a close eye on my numbers and taking a mindful, disciplined approach to my diabetes management has been the key to my success during this time.

I am also using this time to connect with my family as we adjust to life as a family of four. I’m especially grateful for my wife and mid-morning naps for keeping the Kimball household happy and healthy during this time!

Thank you so much for taking the time to talk to me, Charlie. Congrats on your success as an IndyCar driver and as well as on becoming a family of four!

Source: diabetesdaily.com

Rybelsus, the First GLP-1 Pill, Approved for Type 2 Diabetes in Europe

This content originally appeared on diaTribe. Republished with permission.

By Frida Velcani

Rybelsus, a GLP-1 agonist pill already approved in the US, received positive feedback from the European Medicines Agency (EMA) in January and was just approved on Saturday!

In exciting news for the type 2 diabetes community, the first GLP-1 agonist pill for type 2 diabetes has not only been recommended for approval in Europe, it has just been approved by the European Medicines Agency (EMA)! Rybelsus (formerly known as oral semaglutide in clinical trials) is a pill version of Ozempic, a GLP-1 agonist injection for type 2 diabetes. Rybelsus was approved in the US in September 2019, and was met with incredible enthusiasm from the diabetes community, particularly due to its availability and accessibility in the US. For a Rybelsus savings card, text READY to 21848, or go to saveonr.com.

Rybelsus, a once-daily pill, can be taken alone or in combination with other treatments for type 2 diabetes. Currently, GLP-1 agonists in Europe are available only as injections (which, depending on the medication, are taken twice-daily, once-daily, or once-weekly). This approval provides more options for people interested in starting GLP-1 treatment. The EMA approval was great news for giving people more options – the once-weekly injections have also been widely embraced.

The EMA added data to the Rybelsus label confirming that it lowers blood glucose and improves heart health – although it doesn’t say “primary prevention,” the label indicates that heart attacks are prevented in people with and without established heart disease. Clinical trials show that both Rybelsus and Ozempic reduce the risk of heart attack, stroke, and heart-related death. This is important because people with type 2 diabetes are at substantially higher risk of heart disease than those without diabetes. Click here to learn more about the benefits of Rybelsus.

Novo Nordisk has not released information about pricing for Rybelsus in Europe. Our hope is that everyone who can benefit from a GLP-1 agonist will be able to access it as early as possible.

There are more social safety nets in the EU than in the US, and many parts of the EU are more focused on prevention and preparedness than the US, so we have high hopes for accessibility in the EU. The European Society of Cardiology recommends that those with type 2 diabetes begin taking GLP-1 or SGLT-2 medications directly after diagnosis. This is good news for people with type 2 diabetes, as the recommendation should enable greater awareness among healthcare professionals. It will also help the field get less caught up in what has previously been called “clinical inertia.”

If you have type 2 and would like to learn more about a pill that has the benefits of GLP-1 – heart disease prevention, weight loss, lower A1C, and less hypoglycemia (and many experts associate also associate improved time in range with GLP-1) – chat with your doctor or a member of your healthcare team. If you like the idea of a pill, mention Rybelsus, or if you like the idea of a once-weekly injection, mention BydureonOzempic, or Trulicity.

Source: diabetesdaily.com

How to Make an Emergency Preparedness Plan

The reality of living in a time of a global pandemic, such as COVID-19, is slowly starting to sink in for millions of Americans. Without any preventive antibodies, vaccine, or cure, it is extremely scary when the closest thing we can do to protect ourselves is to wash our hands, avoid sick people, and remain socially distant at all times. With society all but shut down, here’s our guide to creating an emergency preparedness plan if you get sick and/or need to quarantine in place for a long period of time.

What and How Much to Stock Up on to Shelter-In-Place

With shelter-in-place mandates in all but a handful of states, it’s important to know what you’ll need for (ideally) several weeks without leaving home. People with diabetes are more susceptible to having severe complications from COVID-19, so even though grocery shopping and going to the pharmacy is permitted under a shelter-in-place order, it’s not necessarily recommended. Even though the food supply-chain will not break down, it’s best to not be running to the grocery store any more often than you absolutely need to, so try and stock up on at least two weeks’ worth of shelf-stable food, water, and toiletries. In a pinch, apps like Instacart and Amazon Fresh offer online grocery orders, so if you’re running low on some staples but don’t want to leave home, these are a great option to have.

Shelf-stable foods:

  • Dried beans
  • Rice
  • Lentils
  • Flour
  • Pasta
  • Canned and frozen vegetables
  • Canned soups
  • Peanut butter
  • Canned and frozen fruits
  • Canned meats and seafoods

In a March interview with NPR, Dr. Peter Jacobson, a University of Michigan professor of health law and policy, advises a stockpile of at least 90 days for medical supplies:

“People should not be caught short of having enough heart medications, diabetic medications, or any potentially life-saving medication that they need on a routine, daily or weekly or monthly basis,” he said.

Sometimes this can be as easy as signing up for your pharmacy’s mail-order option or talking to your pharmacist and asking if they can fill your routine medications for 90 days instead of 30.

Contacts to Have on Hand

Now is an excellent time to gather all of your important phone numbers for doctors and family members should you need to get in contact with them quickly (or if you fall ill and your spouse needs to contact someone quickly). Important numbers to gather and have in a communal space (like pinned up on the refrigerator):

  • Endocrinologist
  • Primary Care Physician (PCP)
  • Your Employer
  • Immediate Family Members
  • Trustworthy Neighbor
  • Local hospital (where your insurance is accepted!)
  • Your Pharmacy/Pharmacist
  • Water Company
  • Power Company
  • Internet Provider
  • Children’s School or Daycare

Have a Plan B If You Need to Evacuate

Have a plan in place if you’ll need to evacuate your home or city. Reach out to your support network of family members or close friends should you need to self-isolate due to COVID-19 exposure, or if you feel your city is becoming unsafe and you need to get away. Make sure you prepare a packing list, have a to-go bag ready, and prepare your home if you need to leave quickly. Conditions can change quickly, so it’s important you know where you can go, how to get there, and what to bring if and when you need to leave.

Important things to pack in a to-go bag:

  • All medications, insulin, and diabetes supplies
  • Cold and flu medicines
  • Low supplies
  • Toiletries and extra towels
  • Clothing/pajamas/exercise clothes and extra socks and shoes
  • First aid kit
  • Copies of important documents, such as prescriptions and ID
  • Chargers for CGM, cell-phone, etc.
  • Vitamins and self-care essentials
  • Books and important mementos

What Do I Do in the Case of…?

It’s a scary time to be quarantined in your home, away from many friends and family. It’s even scarier when you have diabetes. Here are some common conundrums and resources to help you:

  • I Suspect I Have COVID-19: Read up on COVID-19 , and if you suspect you’ve been exposed to the virus, self-isolate immediately and call your physician to describe your symptoms. They will guide you as to what your next steps should be.
  • I Have a Bad Low and I’m Home Alone: If you’re home alone and are battling a bad low, call 911 immediately. If you can access your glucagon, get that while you’re on the phone with an emergency dispatcher. It’s best to know how to inject glucagon before you ever need to know. Learn how to do so here.
  • I’m Sad and Scared During This Time: If you are having trouble managing the emotional toll during this time, check out our top ways to protect your mental health. You can also take advantage of telehealth, and schedule some time with a counselor to talk about your feelings during this hard time.
  • I’m in DKA: If your blood sugar has been persistently high, you have ketones, and you think you may be developing diabetic ketoacidosis (DKA), it’s time to either go to your local emergency department, or call 911 (if you are unable to drive). Be sure to act quickly, as time is of the essence when it comes to extremely high blood glucose levels. Medical professionals will be able to re-hydrate you, better regulate your glucose levels, and monitor you, keeping you safer than you will be at home.

Whether you come down with coronavirus, you are quarantined, or you are self-isolating, you may be unable to venture out to pick up your prescriptions. You may be able to get your medication delivered directly to you. Here’s how:

  • Reach out to big chain drug stores. Both CVS and Walgreens are currently offering free home delivery of prescription drugs.
  • Call your regular pharmacy. Many smaller pharmacies will usually deliver medications for free.
  • Try a mail-order pharmacy. They often offer great discounts (sometimes as much as 90-day supplies for the co-payment of 60 days) as well as free shipping. Find out if your insurance company will cover a mail-order option.
  •  If you need a new prescription, but either can’t get to your doctor’s office, nor can you take advantage of telehealth, consider using HeyDoctor, GoodRx’s telehealth service. HeyDoctor visits cost a flat fee of $20, regardless of your insurance (and even without insurance). They’re currently offering free COVID-19 screening consults.
  • Check out new programs directly from insulin manufacturers. Eli Lilly , Novo Nordisk, and Insulet have recently set up new affordability programs.
  • I Lost My Job: This global pandemic has quickly turned into an economic crisis, with millions of Americans losing their jobs and having their work hours cut, in short order. In the US, losing a job can often mean also losing your health insurance, which is terrifying for someone living with diabetes. Check out our guide to finding affordable health care if you find yourself recently unemployed due to the COVID-19 crisis.

We’re living in extraordinary times, but having an emergency preparedness plan in place can help you manage circumstances in these extreme conditions. What are some ways in which you’ve planned for the worst (but hoped for the best?). What has helped you the most? Share this post and comment below; we love hearing your stories.

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

Insulin Co-Payment Cap Bills

America has a unique problem: prescription drug prices are too expensive for many people. In 2018 alone, 1 in 5 Americans (or 37 million non-elderly adults) went without a prescription drug due to cost. One of the most egregious examples of the high cost of prescription drugs is the rising cost of insulin in the United States. There are over 34 million Americans with diabetes, and at least 8 million are dependent on insulin to live. The list price of insulin has nearly tripled since 2002 and the average price of the drug has increased by 64% since 2014 alone. Most tellingly, a pivotal Yale study recently reported that as many as 1 in 4 people with diabetes have rationed their insulin due to cost. So, what are lawmakers doing about the problem?

Insulin co-payment caps have become a wildly popular idea by state lawmakers to curb the price of insulin for some insured patients in their states. Notably, Colorado was the first state in the nation to pass such legislation, making national news in May 2019. The bill, which caps monthly co-payments (for some insured patients) at $100, went into effect on January 1, 2020.

The main bill sponsor, Representative Dylan Roberts, said, “Colorado is leading the way with this measure, but this is just a first step. We won’t stop until all the pharmaceutical companies and drug middlemen start taking more accountability and stop gouging patients with their high costs.”

Other states have followed suit. The Illinois Governor signed into law similar legislation this past January (although the law doesn’t take effect until January 1, 2021), and there are currently similar bills pending in 36 other states.

insulin sensitivity

The average cost of a vial of insulin in America is over $300. | Photo credit: Adobe Stock

This is great news for many people with diabetes. The average cost of a vial of insulin in America is over $300, and people with insulin-dependent diabetes often require multiple types and vials of insulin per month, which can drive up the price (to live!) into the thousands. Capping co-payments, or essentially “carving” out a $100 co-payment (especially for people on high-deductible health plans who are paying the full list price of insulin until they hit their deductible, which can sometimes be in the high-thousands) can save people thousands of dollars and will undoubtedly help save lives.

Some people may think this solves the insulin pricing crisis, but it doesn’t. These bills are a great start to bring attention to the exorbitant cost of prescription insulin, but there are many people who don’t qualify under these new laws. State legislatures only have jurisdiction over state-regulated health plans, and thus cannot determine pricing on ERISA plans, or health insurance plans that are fully or partially managed by the federal government, such as Medicare, Medicaid, or the Veteran’s Health Administration. Additionally, any large, private employer plans would not fall under the law. Most importantly, anyone who’s uninsured does not receive protection under this law, and must still pay the full list price of insulin at the pharmacy counter.

For states that have expanded Medicaid, this doesn’t pose as much of a problem, as more people are covered by some sort of insurance (Medicaid co-payments are usually set between $1-3). States with robust exchange programs also benefit more under these laws, as by definition these are state-regulated plans that are subject to the co-payment caps. But for people who don’t qualify for Medicaid, cannot afford a health exchange plan, and find themselves without insurance, they’re still stuck paying these outrageous prices, which is sometimes a matter of life or death.

And the problem isn’t going away. The Health Care Cost Institute reported that the price of insulin doubled in a span of four years, between 2012 and 2016. According to their report, the average price a patient with type 1 diabetes paid for insulin in 2012 was $2,864 but that doubled to $5,705 by 2016.

Why is the cost for a nearly 100-year-old drug continuing to rise? For one thing, there are no generic competitors, and only three companies manufacture the drug. Secondly, insulin products are protected under patent laws, which allow the manufacturer to sell a product unchallenged in the market before a generic can be introduced. Novo Nordisk, Eli Lily, and Sanofi, the three main insulin manufacturers, have continued to “tweak” their insulin products in order to extend their exclusivity rights and hold onto their patent longer, without facing competition from generics. In fact, Sanofi has filed lawsuits in the past against Merck and Mylan to prevent them from going to market with a generic version of Sanofi’s Lantus insulin. Additionally, our government (unlike most other countries in the world) does not negotiate drug pricing with pharmaceutical companies, and thus there are no regulations on how high pricing can be set.

This national crisis has even gotten the attention of current and former Presidential hopefuls: Mayor Pete Buttegieg, Senator Amy Klobuchar, Senator Elizabeth Warren, Senator Bernie Sanders, Tom Steyer, and even Vice President Joe Biden have all called out insulin specifically when talking about outrageous drug pricing.

Congress has also started paying closer attention, and H.R. 3, the Lower Drug Costs Now Act has been introduced that would allow for The Centers for Medicare & Medicaid Services to negotiate drug prices on certain drugs (including insulin) to lower the costs, among other measures. Co-Chairs of the Congressional Diabetes Caucus, U.S. Representative Diana Degette and Representative Tom Reed, have also introduced the Insulin Price Reduction Act, which, if enacted, would decrease the price of insulin nearly 75% for Americans, to costs equal to those in 2006. These are all great first steps to addressing American’s cries for help, and to help reduce the burden millions of people with diabetes are facing every day.

Any legislation will have its pros and cons, but people with diabetes suffering due to high drug pricing don’t have to suffer in silence any longer. Politicians are taking note and action, and one day I hope we can all declare the crisis solved.

Have you been negatively affected by the high price of insulin in the United States? Share this article and post your story in the comments below, we’d love to hear from you!

Source: diabetesdaily.com

Treating Type 1 Diabetes in Bangladesh: Dr. Kaufman and Life for a Child

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

By Francine R. Kaufman, M.D.

Greetings from Dhaka

Traveling over the city by air and then languishing in traffic forever to get to the hotel, I see what now seems typical of a developing country: cars, motorbikes, rickshaws, and people at a standstill jammed up in traffic with horns blaring like a discordant symphony; people living on the streets; old buildings with new structures next to them supported by cranes and rebar trying to reach for the sky.

Yesterday, I was at the main diabetes hospital all day seeing patients. I was with Graham Ogle, who runs Life for a Child and continues to deserve sainthood for his global work in bringing care, education, supplies, and life to close to 21,000 children around the world who likely would perish without his efforts. Graham is so humble and focused; he seemingly knows everyone and everything about the care of children with diabetes in Dhaka, as well as everywhere Life for a Child collaborates with local health care providers in over 40 countries.

Kid

Image source: Beyond Type 1

The diabetes hospital – called BIRDEM – is run by Dr. Bedowra Zabeen, an amazing woman and endocrinologist who is known worldwide for her work throughout Bangladesh. They follow over 7,000 children with diabetes (there are 9,000 total in all of Bangladesh); hundreds come in each day for outpatient care or to be admitted. The Life for a Child program follows 3000 children and young adults (up to age 26) and the Novo Nordisk program helps with another 3000 children. This means few can afford to buy insulin and supplies on their own since there is still insufficient support by the government or insurance programs in this country. From Life for a Child, they can only get regular and NPH insulin and 1-2 blood glucose strips per day. This is how I practiced pediatric diabetes 25-35 years ago. There are a few using newer insulins and even a few with insulin pumps, so if there are resources, families can buy better diabetes care than what is offered by these free charity programs.

Work to Be Done

The patients come through like a torrent. First, a newly-diagnosed child, so emaciated and weak, she could barely stand up. Then 4 children who seemed to be about five-to-six-years old, not adequately treated because they don’t have enough glucose strips, and as a result no chance to appropriately adjust insulin doses. School was a problem for each, either they had to miss a lunch shot or their mother had to come to administer it – most often without first doing a blood test. One was very hyperglycemic because her parents were unable to deny her anything she wanted to eat.

There were also two adorable 17-year-old twin girls, diagnosed within a year of each other, who had just graduated from high school and were waiting to see if they could go on with their education. Despite sleeping late, missing shots, and pretty much de-prioritizing diabetes (the universal story of adolescence and young adulthood), their A1cs were still good, mainly because they had way too many low glucose levels. There were many more routine cases: children taking only two insulin shots per day, having too few blood tests, not having refrigerators to store their insulin (they use clay pots instead), and feeling stigmatized and ostracized.

Then came the really hard cases: a child with severe insulin resistance (likely a gene defect due to too many consanguineous marriages in this country) taking 200-300 units of insulin per day, a child with dermatomyositis (a severe autoimmune disease of the skin and muscles) taking 500 units or more a day and chemotherapy and suffering the crippling joint effects of this rare disease that is most often complicated by diabetes. The fact that her hands were stiff and crippled made it all so much more amazing that she is an artist.

There were a number of pubertal children and even prepubertal children with type 2 diabetes – it’s hard to find someone who is not overweight/obese in Dhaka City, and the children appear to be the most affected. Bangladesh has one of the highest rates of diabetes: 8-10% of the population is affected and it is expected to quickly increase to 13% – and this is mainly Type 2. There are higher rates of kidney complications, but the most difficult aspect of having diabetes in Bangladesh is the stigma, the lack of education concerning its cause (children and their mothers are blamed), and the chance that anyone – particularly a child – can succeed with this disease.

Why We’re Here

Our type 1 diabetes workshop in Dhaka was sponsored by Life for a Child, the Bangladesh Diabetes Association, and ISPAD (the International Society for Pediatric and Adolescent Diabetes), and was organized by Dr. Zabeen. Forty-five physicians and nurses, dietitians, and psychologists from 11 cities and areas across Bangladesh attended our lectures and presentations. Some of the participants flew to Dhaka from the north, took trains for hours, and then battled the Dhaka City traffic to get to the Dhaka Club. It was a parade of brightly colored, sparkling saris since most of the attendees were women; many of the men had red hair and beards from henna staining.

Kid

Image source: Beyond Type 1

Our lectures were intermixed with lectures delivered by Dr. Zabeen, Dr. Azad (who started the field of pediatrics in Bangladesh), and a few other physicians who related the Bangladesh experience in childhood diabetes, pregnancy and diabetes, Ramadan and diabetes, and nutrition and diabetes. They discussed the struggles of managing this difficult disease in an area of our world with unimaginable poverty, very limited access to lab testing, supplies and medications (all with no way to pay for them short of a charity program, like Life for a Child), and in a culture deeply rooted in both prejudice and misunderstanding about diabetes. Schools make no concessions for the children at all, blame is placed on mothers and the children themselves, and they are often denied basic opportunities.

A young, 26-year-old woman who was diagnosed with type 1 diabetes (T1D) at 7 years of age came to speak to the seminar attendees. As a result of having diabetes, she was devalued so her father married her off at age 14. As usual in the villages, she went to live with her husband’s family. Since she arrived 12 years ago, her mother-in-law has not allowed her to have food unless her husband is home – and he works all day. So she fasts all day long, gets frequent and severe hypoglycemia, and often takes no insulin at all. Somehow in the midst of this all, she had a baby 5 years ago, and this little 5-year-old girl was skipping and running around, and adorable.

After our lectures each day, we took selfies with the attendees, and we even danced after my lecture on physical activity. The sway of the saris was mesmerizing and the joy and laughter totally infectious. Amidst it all, their questions and comments revealed how committed they all are to advance diabetes care for children in Bangladesh despite all of the obstacles. It was a struggle to go to the airport, but I somehow sat in the backseat and resigned myself to the stop and go traffic, the veering of cars from one lane to the other, and the constant cacophony of horns. It seemed to fit with my simultaneous feelings of despair and hope – with a great belief in Dr. Zabeen and her teams of amazing health care providers and her patients willing to share their stories.

Source: diabetesdaily.com

Can Ozempic Protect the Kidneys for People with Type 2 Diabetes?

This content originally appeared on diaTribe. Republished with permission.By Divya Gopisetty A trial is enrolling over 3,000 individuals living with type 2 diabetes and chronic kidney disease Clinical Trial Identifier: NCT03819153 Trial Name: A Research Study to See How Semaglutide Works Compared to Placebo in People with Type 2 Diabetes and Chronic Kidney Disease (FLOW) Diabetes type: Type […]
Source: diabetesdaily.com

Traveling With Diabetes: 10 Ways to Prepare for Your Flight

This content about flying with diabetes originally appeared on SkyParkSecure.com. Republished with permission. Air travel can be stressful for anyone, but if you have diabetes, it requires more planning and preparation. Whether it’s your first time on a plane or you’re an experienced veteran, it’s always worth checking this guide before you next go away. […]
Source: diabetesdaily.com

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