I woke up naked, sweat-drenched, sobbing and violent. Suddenly, as if a veil was lifted, I was conscious again and saw tubes in my flesh while a busy crowd surrounded the bed. “Oh God,” I thought, “not again.” Emergency Medical Services informed me that I had had a diabetic seizure in my sleep.
Earlier, I had eaten Chinese food and then estimated the amount of insulin to take, and then apparently, I fell asleep. My phone, that normally alerts me of my blood sugar levels, had died. I agonize over the thought of dying from such an idiotic mistake.
Scared of the answer, I asked the paramedic how many calls like mine he gets. His eyes peered down at my medical information and said, “Look, I’ve been doing this longer than you’ve been alive. Out of all of the calls we get, diabetic complications are still the most abundant. Don’t feel so bad about it.”
In fact, I felt worse. Why was that so? He explained that my life-threatening experience was unusual because it happens mostly to low-income individuals without the generous medical technology that I had. It was a polite way to tell me that I was privileged and irresponsible.
I angrily thought, “He doesn't understand! I’m an exhausted college student! Dying during a nap should be the last thing I should be worrying about!” His words humbled me as they stuck. I couldn’t begin to imagine how much worse diabetes is for those in poverty.
“At least half of the calls we get, especially in the poorer areas, are for non-emergency situations such as high blood sugar because they can’t afford the medicine,” said Christian Stone, a three-year veteran of Acadian EMS.
“They know that if they just keep going to the emergency room, they will get treated every time,” Stone said. “This ties up the ambulances that could be responded to actual emergencies.”
Business Insider reported that diabetics worry not more about daily pains or lifestyle difficulties, but of the required price to survive set by opportunistic companies – a cost increased by almost 300 percent in the last decade.
Out of an estimated minimal price for a type 1 diabetic, one would have to pay about $560 annually for insulin alone, according to blogger and 40-year diabetic Christel Aprigliano, who analyzed the data in 2014.
Aprigliano calculated $1,561 as the bare minimum annual cost for diabetics without insurance who are ineligible to benefit from financial programs. She found that an additional several thousand dollars would be paid out-of-pocket.
For a diabetic adult weighing 132 lbs., bare minimum suggests that one would have unmodernized diabetic medication and supplies, while managing to eat healthily. Additional charges from hospitals, specialists, medicines or diabetes-related complications weren’t included in that estimation.
The bare minimum example is an unrealistic concept for diabetics in poverty because inconvenient, unmodernized supplies make it that much more difficult to control diabetes. It’s counterproductive when required costs increase avoidable health risks.
More than 17 percent of Louisiana residents were without health insurance in 2014, according to healthinsurance.org, one of the longest running sources of in-depth information about health insurance. It found that, in 2017, Louisiana had the 11th highest rate of uninsured residents.
However, even those with insurance struggle to pay, such as University student Evangeline Turner. She said that the additional financial burden of her medication and supplies is a bother, even after switching from having a pump to primal syringe shots.
“It's been cheaper to be on shots, but [it has been] very hard to regulate my blood sugars,” Turner said.
Diabetes costs Turner at least $2,000 annually, but she said if she took care of herself, it would cost double that amount.
Turner said she lived paycheck-to-paycheck during her first semester of college and struggling to pay for both rent and food pushed her illness to the back of her mind.
“I didn’t have enough money for insulin and was too stubborn to ask for money from my parents,” Turner said. “So, I went four days without any of my long-acting [insulin] and ended up with DKA (Diabetic ketoacidosis) [and] in the ICU for five days.”
DKA and other severe complications such as heart disease, blindness or nerve disease, are usually the situations diabetics find themselves in before their diagnosis.
During the last week of fifth grade, I, myself, was hospitalized and forced to accept the reality of having an incurable chronic disease.
Before, doctors had assumed my increased urination was from a urinary tract infection, but my mother— a school nurse— insisted on testing for diabetes. I was rushed to the hospital with DKA— something that could have had irreversible effects to my health or killed me, had it stayed untreated.
To comfort me, some adults told me that I was lucky to get diabetes in a technologically advanced age rather than the 1950s — an era of a high diabetic mortality. Previously, one out of five diabetics died and when I considered that, living with diabetes was easier.
Now, knowing that diabetic deaths still occur, not from the lack of medical advancements, but from its costs, is unshakable.
In 2011, the Juvenile Diabetes Research Foundation stated that one in 20 people with Type 1 Diabetes will die of low blood sugar, an occurrence caused by mismanagement and often happening during sleep, which earned it the name “Dead in Bed” syndrome.
Technology has woken me in the night countless times, avoiding my addition to that statistic. The few times I've almost died were in the brief absence of overnight medical technology. Undoubtedly, I would be dead without my continuous glucose monitor and insulin pump.
Dr. Gerald Bernstein, director of the Diabetes Management Program, said he believes that insurance companies prevent easy and convenient management of diabetes through expensive pump prices.
Because of the companies’ financial power over the use of the newest diabetic technology, Bernstein said that having an insulin pump has not become common practice in the U.S., even though studies have shown they significantly benefit diabetic health.
After President Trump eliminated CSR (cost-sharing reduction) funding-- a factor that benefited diabetics under the Affordable Healthcare Act— diabetics with insurance are seeing increased rates, some up to 21 percent.
With up to 3.2 million more people uninsured by the end of 2017 than at the end of 2016, a national effect on diabetics is expected. Insurance companies are forcing diabetics to pay abundantly for insulin— a life-sustaining substance—while covering services like some birth control for free.
Last January, three of the largest insulin-making companies— Novo Nordisk, Sanofi and Lilly— were accused of price-fixing insulin in a class-action lawsuit. The suit alleged that the companies violated the Racketeer Influenced and Corrupt Organizations Act.
In response, the insulin companies publicly committed to not increasing the prices any further and offered discounts. But, for many, it’s still not enough.
Kayleigh Catalanatto, a diabetic for more than a decade, said that diabetic costs have affected her parents. Her mother works for her to have private insurance and Catalanatto made sure she didn’t do anything “extra” to put her mom in a financial bind since her parents’ divorce not long after her diagnosis.
“My dad paid child support every month and my mom used that money [for] any medical expenses we had,” Catalanatto said, noting that this added to the difficulty of the divorce.
Catalanatto’s pump consists of a monitor that constantly updates her of her blood glucose levels and a pod that administers the insulin inside of her. Diabetics are attached to insulin pumps through needles and tubes, however, monitors are not and must be kept at a close range to function through Bluetooth.
About six years ago, Catalanatto said she thought she had placed her monitor back into her purse when she got into a vehicle to leave. She later realized that her monitor wasn’t in her bag, but rather, smashed on the ground after it was run over by the vehicle.
“It was a great lesson learned, “ she said. “Expensive, but learned.” The monitor’s replacement and overnight shipping cost about $550, even with insurance.
In the future, University student Emma Hopkins said she hopes insulin is brought down to a lower cost as other drugs made several decades ago have been, such as Lisinopril, spironolactone and many antibiotics.
“As with any chronic illness, no one asks for it,” Hopkins said. “But, when you're paying an arm and a leg for insulin that [originated] in 1970, something is wrong with the system of cost of medical equipment and medications.”