When I was a kid, I first learned about diabetes through Stacey’s story in The Baby-Sitter’s Club series. In my adolescence, I was a huge Jonas Brothers fan and totally cried when Nick Jonas, who has diabetes, performed “A Little Bit Longer” when I saw them live. During my college years, I became invested in disability studies and am especially passionate about portrayals of disabilities and chronic illness in young adult literature.
In popular culture, diabetes is commonly used as a punchline or plot device. However, Elsa from Disney’s Frozen is the exception as it was revealed her character and hit song “Let It Go” was inspired by the creative director’s son’s experience living with diabetes. Still, despite the vastness and ease of the Internet, misperceptions about diabetes and the lives of people who have it abound.
In honor of November being National Diabetes Month, I spoke with several people with Type 1 Diabetes (T1D) about their lived experience and the concerns they currently face living with this chronic illness.
What is diabetes?
Diabetes is when your blood sugar level rises higher than normal, known as hyperglycemia. The two most common types are Type 1 and Type 2.
Type 1 is an autoimmune disease where the pancreas stops producing insulin. Insulin is a hormone involved in converting food into energy. T1D can occur at any age, but is most commonly diagnosed in children and young adults. There is no way to prevent it, and no cure has been found yet. Type 1 is managed with insulin therapy via injections or infusions and careful monitoring of blood sugar levels throughout the day.
Type 2 is when your body becomes insulin resistant. At first, your pancreas may be able to make enough insulin to keep up, but eventually it will not be able to keep your blood sugar levels within a normal range. Many people can manage their Type 2 diabetes with exercise and healthy eating. Other may require oral medication and insulin.
- Diabetes is something people do to themselves. Many people believe this disease is a consequence of living an unhealthy lifestyle, and thus place a lot of blame on people with diabetes. This stereotype is not fair to people with either Type 1 or Type 2. Even with Type 2, there is a strong genetic and socioeconomic factor.
- People with diabetes can’t have sugar. “People with diabetes can eat sugar and carbs, they just need to calculate everything they eat,” said Elizabeth Rowley, the founder and director of T1International. Rowley has lived with Type 1 diabetes for almost 25 years.
- We know everything there is to know about T1D. There are many factors that contribute to causing the disease and no diagnosed case of T1D is caused by the same factors as another. Thus, much more research is needed to fully understand it.
- The “good vs. bad” diabetes narrative. Some people may say Type 1 is “good” because people with diabetes didn’t “do anything to deserve it.” Or that Type 2 is “good” because you “might not need insulin.” In reality, neither type is “better” than the other.
- Diabetes is easy to manage/ live with. T1D is a huge burden on day-to-day life. Every decision affects your blood sugar level, from your mood to having to hustle to catch the train. “It’s a mental thing,” said Dan Browne, a Type 1 diabetic who studies stem-cell based treatments for diabetes at the New York Stem Cell Foundation in Manhattan and is a patient advocate with the College Diabetes Network in Boston, MA., “It takes away the mind and willpower to focus on other things.” Rowley agreed, saying, “Imagine having to put together a puzzle or solve an ongoing, complex math equation all day, every day. That’s Type 1 diabetes.” There’s also the financial burden of paying for medications and equipment that never goes away. “It is outrageously expensive to live as a diabetic in America. I spend upwards of $600 a month to continue to live, and I already have health insurance,” says Robert Frisk, who has worked in diabetic complications research via the Michigan State University Department of Physiology. Frisk is currently a QC chemist working for a pharmaceutical company.
Managing diabetes requires a whole arsenal of tools and supplies. Insulin can be injected with a syringe or insulin pens or it can be infused through a pump. Blood sugar levels are checked throughout the day with a glucometer which uses test strips and involves pricking your finger each time with a lancing device. There’s also the Continuous Glucose Monitor (CGM), which offers a constant, wireless monitoring of your blood sugar level. Of course, what someone uses is largely up to their preference and what suits their lifestyle. Healthcare coverage, for better or worse, can also have a say in what tools and brands are made affordable and available for the person.
“Care is being changed very rapidly by technology,” said Browne.
While a cure doesn’t seem to be in the near term horizon, in the next couple of years pumps and CGMs will be able to communicate with each other and be semi-automated.
“Unfortunately, I do not see much progress towards a cure outside of the academic field. There simply is no money in curing diseases. None. There is a considerable profit to be made by keeping people unhealthy, though,” said Frisk.
Insulin Price Hikes
Recently in the news, the outrageous cost of insulin in the U.S. and the need for companies and Congress to take steps to make this more affordable for people with diabetes has garnered a lot of attention. Even Bernie Sanders has called attention to the issue on Twitter. As a result, this makes the process of acquiring the life-saving drug both expensive and unpredictable.“I have seen the cost of insulin rise tenfold in my lifetime,” Frisk says.
Insulin is not an optional treatment for people with Type 1; thus, they are forced to pay thousands of dollars each year just for the insulin. It’s a far cry from the intentions of Frederick Banting and Charles Best, the discoverers of insulin, who gave away their rights to insulin and always intended for there to be universal access.
“Most people go through one vial of fast-acting insulin per month. The current price of fast acting insulin per vial is $255,” Browne said. (For those of you who don’t have a calculator handy, that comes to about $3060 per year.)
While the insulin price hikes have been an ongoing issue for quite some time, people and organizations are starting to take a stand against it. The American Diabetes Association started a Stand Up for Affordable Insulin petition for people to sign.
“Our community needs to lose our complacency and demand our rights. The HIV/AIDS community set a great example for us to follow. I, and many of our supporters want to see #insulin4all,” said James Elliott, a Toronto-based Trustee with T1International, who researches diabetes and global health issues for a living.
Current Healthcare Concerns in the U.S.
As Americans prepare for the newly elected government officials to be sworn in this January, anxiety runs high for those living with chronic illness.The Affordable Care Act, although not perfect, includes two important provisions: 1) insurance companies are not able to deny people because of existing conditions, and 2) individuals may stay on their parents’ healthcare plans until the age of twenty-six. Both are incredibly important to people living with chronic illness.
When I asked Browne what his biggest fear was under this new government, he immediately responded, “Uncertainty.”
In the second presidential debate, healthcare did receive some attention, although what that means now with the election over is unclear.
“There is a lot we do not know yet, and it’s difficult to speculate at this point what will happen to healthcare under that administration. We hope for the sake of people in the USA who are already struggling that pre-existing conditions remain able to be covered under insurance schemes,” Rowley said. “Trump’s new administration seem to have several close ties with pharma companies, which does not bode well for the general public’s hope that the government will step in to hold these companies accountable.”
Outside of the U.S., diabetes management is even more unaffordable and challenging.
“Sadly, so many people around the world do struggle, and many still die, because they cannot access a substance that has been available for nearly 100 years. This is the case in locations where health systems are under-resourced, particularly in low-income countries,” Rowley said.
What you can do to help:
How to be a good ally/friend to someone with diabetes:
- Don’t judge. Don’t assume. “Someone can have a great blood glucose and still be losing their vision. Or having kidney failure. It’s all just a game of odds,” said Elliot.
- Know where their emergency supplies are. Where do they keep their glucagon pens in case of an unexpected low blood sugar? Better yet, familiarize yourself with how to administer glucagon in case they are unable to.
- Find out what symptoms or behaviors they exhibit when having a low blood sugar. “Each person reacts differently, and knowing what signs to look for can help you react quicker and more effectively,” said Frisk.
- Have empathy. “Don’t tell people about your one friend/grandmother/aunt who went blind, you found passed out in a snow bank, is losing a foot, and how that’s just terrible, but ‘you’re a good diabetic so that won’t happen to you,’” Elliot said.
Organizations worth giving your time and money to:
- JDRF (jdrf.org) Their funding goes toward finding cures, treatments, and preventatives for T1D and its complications.
- College Diabetes Network (collegediabetesnetwork.org) They work to support students and young professionals with diabetes by providing peer based programs.
- T1International (t1international.com) They work toward providing access to insulin, diabetes supplies, medical care, and education for all people living with Type 1. They have a Type 1 Diabetes Access Charter you can sign in support of five simple rights of people with type 1 diabetes that will be used to bolster advocacy efforts worldwide. You can find them on Facebook and Twitter (@T1International) and on Tumblr (insulin4all.tumblr.com).
- American Diabetes Association (http://www.diabetes.org) They provide research funding, support, and services for people with diabetes.
- BeyondType1 (beyondtype1.org) A supportive community that provides education and awareness for those living with Type 1.
The Dale Tribe on YouTube is a family of six that live in the mountains of Colorado. Amidst the family’s fun adventures and myriad of hobbies and interests, Jon and Amy document what it’s like to be parents of a child with Type 1. They’ve vlogged their journey with diabetes since Aspen’s diagnosis in January 2016. They recommend you check out this Day in the Life video.
“The Honeyed Siphon” An essay that delves into the lived experience of diabetes as well as diabetes’ history.
Think Like a Pancreas by Gary Scheiner If you’re interested in getting into the nitty gritty of living with diabetes and managing it (and getting super nerdy about diabetes), this book is for you.
Essays from Beyond Type 1 Stories: “Dear Katie, This is Your Diagnosis Day,” “An Unexpected Chapter: Life with Type 1 Diabetes,” “#MeFirst,” “Stupid is as Stupid Does: Things Family Say About Diabetes,” “Life With Type 1– A Photo Essay,” “A Letter to a Newly Diagnosed Family”
Featured Image by Anne Marie Moran
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