The fight for insulin: high costs lead to deadly consequences for people living with diabetes

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Nov. 14 is World Diabetes Day, and roughly 30 million people have diabetes in the U.S. When an individual is diagnosed with diabetes, it either means that their body can no longer produce insulin (Type 1) or that their body cannot process insulin (Type 2). (American Diabetes Association)

Insulin is a hormone produced by the pancreas that regulates blood sugar and allows the body to process sugar as energy. When blood sugar rises too high, it causes diabetic ketoacidosis in which acid builds in the bloodstream and the body shuts down.woman doing injection with insulin pen

Those with Type 1 have to inject insulin daily just to stay alive, and almost one-third of those with Type 2 must do the same.

“I think there’s a lot of stigma around people with diabetes,” said Quinn Nystrom, a diabetes advocate who was diagnosed with Type 1 at the age of 13. “I think it’s important for people to know that Type 1 diabetes is an autoimmune disease and there’s not a darn thing you could do to prevent that. And Type 2 has many risk factors. You can’t just say somebody ate their way into a diabetes diagnosis. As someone who has been living almost 20 years with diabetes, it’s a really stressful disease having to keep yourself alive. We don’t get a day off.”

Before injectable insulin was discovered in the 1920s, a diabetes diagnosis was a death sentence. Insulin was a medical miracle that finally allowed people with diabetes to live longer lives.

Now, there is a high price for that miracle.

 

The price to stay alive

The three men who held the patent for insulin in 1922 sold it to the University of Toronto for a mere $1 each in the hope that those who needed it would have affordable access.

Today, their hope is not a reality for most.

According to T1 International, the list price of insulin in the U.S. has increased by 1,123 percent since 1996. And from 2002 to 2013, the cost tripled.

The reason behind the price spike is complicated. It could be attributed to the three companies that control 99 percent of the insulin market in the U.S. It could be the pharmacy benefit managers who negotiate discounts with manufacturing companies. Or it could also be the fact that no generic version of insulin exists. The lines are blurry, and the areas are gray.

“I’m not somebody who points a finger at one thing,” Quinn said. “We need to look at the whole supply chain to see how we got here.”

Quinn said she uses about two vials of insulin a month, but that number can vary depending on the person, and if that person doesn’t have insurance or medical assistance, the price skyrockets. This becomes even more critical given the fact that insulin has a short shelf life and is extremely temperamental.

“Even if you don’t go through it in a month, it goes bad in a month. If it gets too cold or hot, it goes bad. And you aren’t allowed to get refills,” Quinn said. “So for instance, in Minnesota, if you drop Diabetes Insulin4All Indianapolis Rallyit outside in the winter and it goes bad, they won’t refill it. So we live in this constant fear and anxiety because we can’t even have back up meds. I believe this is a crisis.”

 

Rationing their lifeline

High prices have forced individuals to choose whether to buy insulin or buy other necessities. As a result, some have resorted to rationing their insulin. This can have long-lasting complications or deadly consequences.

“Literally, the one medication that will keep us alive or out of an emergency room has been priced so high that most Americans with diabetes have had to resort to rationing,” Quinn said.

She described what happens to your body when you ration or stop taking insulin. First, blood sugar begins to rise and remains elevated. You develop flu-like symptoms including fever, shortness of breath and dehydration, and you urinate constantly as your body tries to rid itself of excess sugar.

Once your blood sugar has been elevated for multiple days, more intense symptoms kick in such as blurred vision, abdominal pain and vomiting. Acid floods your bloodstream, and because your body cannot use the sugar for energy, it must salvage energy elsewhere. It starts by consuming fat, then muscles. Eventually, organs shut down. You fall into a coma, and if you don’t receive insulin, you will die.

“This shouldn’t be happening,” Quinn said. “It’s not that we haven’t discovered this medication. We’ve had this current form of insulin since 1996. That’s what makes it so frustrating for people like me. Recent studies show that 7.5 million people depend on insulin. That’s not a small problem.”

 

What can we do about it?

In October, Minnesota became the first state in the nation to take federal action when Minnesota Attorney General Lori Swanson sued the three insulin manufacturers over the prices. Quinn is encouraged by this step and hopes other states will follow suit.

As for the rest of the public, Quinn said that if they are passionate about diabetes or the cost of insulin, they should get involved by contacting their representatives or joining advocacy groups.

One way to do this is through the Minnesota chapter of T1 International, a global organization that is solely committed to the high cost of insulin. The Minnesota chapter will be established in the coming months. Those who are interested can visit www.t1international.com or email Quinn at quinn@datelinediabetes.org.3d rendering of insulin vials over white

Another opportunity is a State Capitol rally on Feb. 21, 2019, to lobby for legislation to be passed that will help with the high insulin cost in Minnesota.

“Change in legislation on the state and federal level will only happen if we can get as many people who care about this issue to become diabetes advocates,” Quinn said. “You don’t need any qualification or training. I’m just Joe Schmoe from Baxter. I just get up and tell my story. You don’t have to be a celebrity. You don’t have to be a doctor. Your politician will listen to you because, ultimately, you’re their boss. If we don’t stand up, it will continue to be a problem.”

 

Diabetes Resources

For those who might need support or assistance in their battle with diabetes, numerous resources are available:

  • Diabetes Online Community (DOC) is an online community that offers support, resources and someone to talk to who is experiencing the same thing.
  • The American Diabetes Association free hotline – 1-800-342-2383 (1-800-DIABETES) – can help point people to the help they need.
  • T1 International is a global organization that is solely committed to the high cost of insulin. Those who are interested can visit www.t1international.com.
  • Tri-County Health Care’s Change Your Weighs Support Group is held every other month to offer nutrition resources, information and support. Contact the Diabetes Education Department at 218-632-7113.

 

Diabetes Quinn Head ShotAbout Quinn: For the past two decades, Quinn Nystrom has shared her story with more than 300,000 people across North America. At 16, she was chosen as the National Youth Advocate for the American Diabetes Association and currently sits on the Community Leadership Board for the Minnesota Chapter of the American Diabetes Association. She is the author of “If I Kiss You Will I Get Diabetes?” and was appointed by Minnesota Governor Mark Dayton to the Council on Disabilities. She also worked for Tri-County Health Care in the marketing department for three years. Learn more about her here.


Matthew’s journey with diabetes

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By Matthew Van Bruggen, TCHC Board of Directors

 

November is American Diabetes Month.

Diabetes is an autoimmune disease that causes your pancreas to reduce or stop producing insulin, a hormone that regulates the amount of glucose in the blood and related blood-sugar levels. I am one of the approximately 3 million Americans who have type 1 diabetes.

There are two types. With type 1, your pancreas shuts down and stops producing insulin. With type 2, your pancreas still functions but doesn’t make enough insulin.

I grew up in Wadena and moved back here in 2004 with my beautiful wife, Shanna. We have four children, all of whom were born at TCHC.

Chance diagnosis

I was a 21-year-old college student at the University of South Dakota when I first learned I had diabetes. Some friends and I went for ice cream, and one of my friends, who had type 1 diabetes, decided to check my blood sugar for fun. My blood sugar turned out to be higher than normal.

I soon learned I also had type 1 diabetes. It was surreal, as I had not had any health problems. I decided that I would make the most of the diagnosis and embrace the lifestyle changes that I would face through education, healthy eating and exercise.

Daily life

My day starts and ends no different than most people. However, in between, it involves checking my blood sugar four to six times a day by pricking my finger and ensuring my blood sugar levels are controlled. I wear an insulin pump, which administers insulin. Based on what I eat, I have to take additional insulin.Close-up Of Person Hands Holding Glucometer At Desk

Living with diabetes is not without challenges. If I don’t take enough insulin, my blood sugar rises and could cause a condition known as ketoacidosis where I can get really sick. If my blood sugar gets too low, I can get lightheaded and shaky.

One thing that helps me control my diabetes is diet. Fortunately, my wife is a trained chef and is passionate about creating healthy recipes for our family that also support a type 1 diabetic lifestyle. We also stay physically active, and combined with diet, these are the two ways I can control my diabetes.

Despite the challenges of diabetes, it’s a disease that you can manage and allows you to live a normal life with lifestyle changes including diet and exercise. The more you do those, the less insulin you’re going to use and the healthier you’ll be.

More awareness, more research

Many autoimmune diseases, not just diabetes, are prevalent in today’s society, which have led to more awareness and more research.

I believe that the research being done will result in a “cure” for type I diabetes in my lifetime. The technology for living with diabetes has improved dramatically since I was diagnosed.

If you receive a diabetes diagnosis, learn as much as possible because it’s going to change your life. You should also understand that it’s not a terminal diagnosis. Both type 1 and 2 are chronic, but they can be managed with lifestyle changes. You can live a very normal life. Just stay positive.

Resources close to home

Tri-County Health Care has come a long way in the past decade with diabetes awareness and the ability to serve our patients. We have a great diabetes education program with knowledgeable educators who are willing to go above and beyond for our patients.

We treat diabetic patients, and if there’s ever a situation where our providers don’t have an answer, they know where to find it. I visited an endocrinologist in Minneapolis for many years but now feel more comfortable treating with Dr. John Pate instead. The care he provides me is exemplary.

Anyone who has diabetes or who is interested in learning more about diabetes is welcome to attend TCHC’s Diabetes Support Group, which meets the third Wednesday of each month at 10 a.m. at the Maslowski Wellness and Research Center in Wadena.

For more information about diabetes, call the TCHC Diabetes Education Department at 218-632-7113 or click here.

 

Matt and his family posing for a photo by the lake.

Matt with his wife, Shanna, and their four children.

About the Author: Matthew Van Bruggen is married to Shanna, and they have four children, Ava, 11; Jack, 9; Theo, 2; and Vivian, 1. He has served on the TCHC Board of Directors since 2010. He is a practicing attorney, a youth hockey coach and an avid sports fan of the Minnesota Vikings and Minnesota Wild.  He also enjoys spending time with his family and enjoying many of the year-round outdoor activities Minnesota has to offer.


Why Step Out for Diabetes in Wadena

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By: Pam Doebbeling, RN

pamdiabetesblog2As part of the Tri-County Health Care Diabetes Education team since 2007, I have seen many changes in diabetes from treatment to the sheer number of people diabetes. Today, 29 million Americans have diabetes, and those numbers are only increasing.

I feel diabetes is a disease that has or will touch almost everyone at some time in their life, thru family members or friends.

It is a disease that involves participation and lifestyle changes to help control.  These seem to be the biggest benefits and the biggest drawbacks. Change is hard.

Thru the American Diabetes Association (ADA), we are able to “Step Out” and make more people aware of diabetes.  This past May we hosted our first ever diabetes walk. We had a group of people participate on a cold Saturday morning in May at Sunnybrook Park. Many local Wadena businesses participated along with Novo Nordisk, Lilly, and Bayer. Not only did we have fun and support each other while out getting some exercise, but we raised $1,000 for the American Diabetes Association!

At Tri County we are proud to have “stepped out” for diabetes as an awareness event.

Look for an announcement coming soon about our date for 2017! We will be having vendor displays, a beautiful walk around the park, and the opportunity to raise money, plus awareness for diabetes.

Get on your walking shoes and join us in supporting this important cause!

2016 Diabetes Walk

2016 Diabetes Walk

About the Author: Pam Doebbeling, RN, has been at TCHC for 23 years. She’s been a part of the diabetes education team for nine years. She lives in Verndale and has two grown children and five grandchildren, and one cranky cat! She’s also part of the Wellness Committee and is in charge of the monthly Diabetes Support Group. To learn more about that group and the various monthly topics, click here: http://www.tchc.org/education-and-resources/event-listing/diabetes-support-group.

 


Life with Diabetes

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By: Jenny Steinkopf, RN, TCHC Care Coordinator

National Diabetes Month is observed every November to draw attention to diabetes and its effects on millions of Americans. Diabetes is one of the leading causes of disability and death in the United States. It can cause blindness, nerve damage, kidney disease and other health problems if it’s not controlled. One in 11 Americans have diabetes — that’s more than 29 million people. Another 86 million adults in the United States are at high risk of developing type 2 diabetes.

Rocking my insulin pump while paddle boarding.

Rocking my insulin pump while paddle boarding.

Encouraging, right? There are a lot of “bad” things about diabetes, but today, I want to share a “good” thing related to diabetes. In fact, it’s perhaps one of the best I have experienced in my life. You see, I am one of those statistics. I am the one in eleven. I have a high risk for blindness, nerve damage, kidney disease and all sorts of other problems. I have diabetes.

I was diagnosed with type 1 diabetes when I was nine years old. No, my parents didn’t feed me too much sugar. I didn’t eat too much candy (although I probably ate my fair share…). I was an active kid. There was nothing I or my parents could have done to prevent it. But it happened, and it changed our world. The Tri-County Health Care team had their work cut out for them, but Dr. Lamberty, Jackie Vandermay, Lynae Maki and Sue Sigardson (physician, nurse, diabetes educator and dietitian at the time) were our saving grace as they taught my parents, siblings and I about diabetes and how to manage it.

Counting grapes, weighing meat, giving myself shots, measuring cereal, poking my finger with a needle and seeing the doctor frequently became all too familiar the summer before I started fourth grade. The next summer, my parents suggested I go to Camp Needlepoint, a camp they had heard about for kids with diabetes.

My cabin when I was a camper-I'm in the bottom, right hand corner in the tealish colored shirt.

My cabin when I was a camper-I’m in the bottom, right hand corner in the tealish colored shirt.

Camp Needlepoint was like heaven on earth for a kid with diabetes. It wasn’t just kids with diabetes, but many staff members had diabetes as well, including the counselors, doctors and nurses. I not only had peers with diabetes, but saw people older than me living with this crazy disease. One of my favorite parts about camp was the morning routine, which included breakfast followed by flag pole announcements. These weren’t just any announcements. They were very important ones, such as a counselor proudly announcing, “Jessica in Cabin 5 gave herself her own shot for the very first time this morning!” and everyone would yell, clap and cheer as if the Twins had just won the World Series.

The American Diabetes Association website states, “The purpose of Camp Needlepoint is to provide a fun and safe camping experience for children living with diabetes. We want to give kids the opportunity to meet other kids just like them as well as help them gain confidence and independence in managing their diabetes.” Camp Needlepoint does this like nobody else can. It was a place where it wasn’t abnormal to poke my finger to check a blood sugar, count my carbohydrates and take a shot before lunch because everyone at Camp Needlepoint did that! Activities, meals and snacks weren’t changed because a “diabetic kid” was there. I didn’t feel alone because everyone there knew what I dealt with on a daily basis. The week started out with a bunch of strangers and within a week, I had found a new family I didn’t know I needed. I was a “Trailblazer”, which included all kinds of fun and adventures. We played games, did arts and crafts, went hiking, swimming, kayaking, horseback riding and all sorts of “normal” kid stuff. We even did an overnight camping trip as a cabin that included sleeping in a tent on the beach along the St. Croix River.

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Me as a counselor, top left

I returned to Camp Needlepoint as a CIT (Counselor in Training) and Counselor when I was in high school. There I had the privilege of encouraging young girls in their independence and confidence in managing their diabetes. Camp Needlepoint creates a comradery that friends, family and health care providers simply cannot provide.

Living with diabetes is not always fun and there are some “bad” things associated with it, but much of life is all in our attitude and perspective. I’m so thankful I had the opportunity to go to Camp Needlepoint to help me see some good come from what often seems like a bad thing. To celebrate National Diabetes Month, tell someone about Camp Needlepoint! You never know when there might be a nine year old girl with diabetes looking for a place to feel like a “normal” kid.

To learn more about Camp Needlepoint click here…

To learn more about Tri-County Health Care’s free, monthly diabetes support group click here