The Invisible Disease that Begs for Healthcare Reform
Citizens Dependent Upon a System They Can’t Depend On
In middle working-class America, it is often said that our healthcare system works until you need it, and then, it doesn’t. We go about our daily lives, working hard in “decent” paying jobs to get by, having little to no time to affect positive change where it is needed because we are too busy trying to provide for ourselves and our families.
We work until we die, and, for those of us managing disease each and every day throughout our adult lives, perhaps with even more courage and persistence despite the swelling physical, emotional, and financial pains we bear.
We may bear these heavy burdens that are often disregarded from conversations they should be centralized in, feeling misplaced or disconnected in our social circles. As a person managing a chronic disease, I know this story very well. In fact, I live it every day of my life, with every finger prick, and every insulin injection. My fingers are calloused beyond repair. My thighs, upper arms, and buttocks are bruised, and my spirit and activity require much more personal motivation.
Still, I do not give up. Still, I am positive. Still, I am eager to affect change.
I work hard to earn a life I am proud of and, through writing, digital marketing, editing, website development, public speaking, and advocacy, I strive to affect this positive change, specifically with healthcare reform, in addition to my passions for climate relief and inclusivity and equality movements.
Like some of my peers in the type 1 diabetes community, I am in pretty good control of my condition and have been since I was 10-years-old. Still, I am not immune to the consequences of type 1 diabetes, like with type 1 diabetic seizures, or with hypoglycemic or hypoglycemia episodes. Even with good control, these things happen, because, with these conditions, we are still human. Perhaps even more so.
I was always aware of the consequences of not managing my condition, and, while those just joining the conversation surrounding American healthcare, or for those who refuse to see or believe its everyday woes, may call this thought process dramatic, it is far from. It is the reality for too many who must resort to insulin rationing to be able to live simply, using basic technology to survive. We go to bed at night just hoping to wake up in the morning due to the lack of accessibility and affordability of healthcare in America.
Type 1 diabetes is a chronic disease that occurs when the immune system attacks and destroys the body’s insulin-producing beta cells. This means no insulin, a hormone the body needs to regulate glucose in the blood and needs to survive, is going to the pancreas. It is unclear to science what exactly causes type 1 diabetes, though speculation leans towards environmental factors, genetic makeup, or even viruses.
Those with type 1 diabetes are completely insulin-dependent and survive using insulin pumps, Omnipod technology, or multiple insulin injections every day. Before diagnosis, they may have suffered from symptoms including frequent urination, vomiting, nausea, excessive thirst, sweating, or severe mood swings.
Type 1 diabetes is often gotten wrong in the media, among celebrities in the public eye, and even with your “common” social media user. It is frequently clumped with type 2 diabetes as the punchline of a joke, or used in memes that hint at sugar being the cause of all forms of diabetes, and further implying that all those with any form of diabetes are fat or sugar addicts. This simply isn’t true about type 1 diabetes, and, often, it is not corrected. Awareness comes in at a close second or third with disparities after the lack of accessibility and affordability of the condition in America.
Sadly, we tend to live in cultures of selfish and narrow-minded vision, only minding our own small worlds and those we invite into them. It is only when the bigger picture enters our small worlds that we tend to become a part of the greater conversation of being alive. Therefore, as more pain points of our healthcare system become clear within our individual lives, there is a chance for the conversation and change to become broader.
The healthcare people managing type 1 diabetes need to survive, as determined by most private insurance providers, is not actually “necessary.” Medical technology like continuous glucose monitors that could prevent young middle school girls at sleepovers, for example, from suffering from hypoglycemic episodes in the middle of the night is “unnecessary”.
On September 19, 2018, 10-year-old Sophia Daughtery died as a result of suffering a severe low blood sugar in the middle of the night, something a device like a Dexcom CGM G6 could have helped to alert her about, wake her up, and treat. As a result of the dramatic low blood sugar level, Daughtery suffered brain trauma, specifically, a herniated brain stem. She is gone too young, and, even sadder, her story is not the first like this. There are many with this same fate.
American healthcare is lost to cheapness, controlling the masses with outrageous costs, and lacking humanity.
One story like this should be enough to leverage a foundation for healthcare reform, much less the thousands that occur annually across the country, but there is still not enough action and things are happening too slowly despite the existence and efforts of incredible global healthcare advocates fighting for fair coverage and aid.
According to the American Diabetes Association, diabetes is the seventh leading cause of death in the United States. Recent reports from the American Diabetes Association, within the past 6 years, indicate that 10% of deaths of patients with type 1 diabetes were related to hypoglycemic episodes. More alarmingly, most people are diagnosed with type 1 diabetes before the age of 40. Most commonly, it is diagnosed in youth. Before the turn of the century, type 1 diabetes was referenced largely and interchangeably as “juvenile diabetes”. Some still use this terminology today.
On average, before a person with type 1 diabetes meets their healthcare insurance deductible in the United States, they pay anywhere from a hundred to a few hundred dollars for a month’s supply of insulin. In some cases, or without insurance, medication can cost as much as an average monthly rent payment.
Medical devices like pumps and CGMs are often classified as “commodities” by healthcare insurance providers, meaning that, often, the most effective medical technology is not covered, but the cheapest is. This is not to say the most expensive technology is always the most effective, but most insurance providers opt to cover more of the cost of cheaper models rather than those that have been rated the most-effective, doing slim to none for mortality rates for those managing type 1 diabetes.
Type 1 diabetes is not the only disease plagued by the lack of accessibility and affordability of the American healthcare system. Americans are eager for relief as the cost of pharmaceutical visits and annual checkups continue to climb, drying out pockets faster than a bad bar habit. Health problems and chronic diseases like epilepsy, arthritis, Alzheimer’s, arthritis, cancer, or heart disease, are growing more egregiously. The divide is apparent, and the effect weighs heavily on financial, physical, and emotional well-being across the country.
I am a survivor. I am a manager, but I live with incredible financial stress and emotional grief surrounded by my condition. What keeps me strong and positive, personally, is my willingness to be strong and live a good life despite a sometimes debilitating disease that gives me frequent fatigue, stress, and, in the past, even anxiety and depression. Type 1 diabetes can be isolating and demeaning, but it does not have to be as financially jeopardizing. Nor do any of the aforementioned healthcare problems or conditions, so long as there are advocates and activists rising above daily mourning to affect positive change.
The best way you can be a part of the countrywide movement for healthcare reform starts locally. Research some groups you can be a part of to rally with. There are like-minded individuals across the United States ready to make a change, just like yourself, if you’ve made it to the bottom of this piece.
Healthcare reform doesn’t happen when you lean into the silence. It happens when you speak up and become active.
Resources:
- “Hey UHC: Here are 16 Reasons Pumps Aren’t a Commodity” | InsulinNation.com | https://insulinnation.com/treatment/hey-uhc-here-are-16-reasons-pumps-arent-a-commodity/
- “Pennsylvania girl with diabetes dies after blood sugar drops during sleepover, family says” | Fox News | https://www.foxnews.com/health/pennsylvania-girl-with-diabetes-dies-after-blood-sugar-drops-during-sleepover-family-says
- “Severe Hypoglycemia Predicts Mortality in Diabetes” | American Diabetes Association, Philip E. Cryer | http://care.diabetesjournals.org/content/35/9/1814
- “How the High Cost of Medical Care is Affecting Americans” | NY Times, Elisabeth Rosenthal | https://www.nytimes.com/interactive/2014/12/18/health/cost-of-health-care-poll.html
