Shane Patrick Boyle passed away on 2017, March 18th from diabetes type 1. He didn’t die from unexpected complications from the disease, but from not having enough money to get a monthly supply of insulin.
He started a $750 GoFundMe request to pay for his insulin but was $50 short. Presumably, after stretching his meds for as long as he could, which resulted in him developing diabetic ketoacidosis.
This is a deadly complication that can occur if the body is unable to transport the glucose out of the blood and into the cells.
Boyle recently moved from Houston to Mena to be with his mother who was sick as well. However, she died only seven days before Boyle did. He lost his prescription benefits the moment he crossed state lines.
So, the cause of death was the complications that occurred from waiting too long to improve his own healthcare status.
When on an ACA plan with no out-of-state network, people can use their insurance for urgent medical care or emergencies only, but not for prescriptions, said Obianuju Helen Okoye, a healthcare physician.
So, if patients need prescriptions, like insulin, for example, they have to pay for it.
Diabetes is a condition that affects the body’s ability to produce an adequate amount of insulin. Therefore, people with this type of condition, have to take insulin prescriptions to survive. Here is what Boyle had to say in an interview in 2015.
To him, the most important invention was the insulin pen, which was invented 33 years ago. Since he has the condition, he needs insulin to survive. He used long-tasting insulin before going to bed and a fast-acting one he took before he ate meals.
He also took one whenever his blood sugar would get too high. However, back when he had to use insulin in vials, he had to refrigerate them.
In the end, the vials broke very easily. As a result, they couldn’t be re-capped.
Moreover, he had to carry syringes to draw the insulin out of the vials. Therefore, when cops searched him, they believed he carried drugs around.
This proved to be immensely infuriating. That is why Boyle believes insulin pens gave him freedom.
They were portable, easily opened, unbreakable, and easy to use. However, they are incredibly expensive. Even with insurance.
Boyle’s GoFundMe Page
Boyle did something most people with type 1 are forced to do. He tried to get funds to pay for his expensive prescription. In addition, he used what little he had by stretching the doses.
According to Rebert Gabbay Senior Vice President and a Chief Medical Officer at Joslin Diabetes Center, no doctor would recommend something like that.
However, many patients have to go through the same thing.
If people take less insulin than they need, they can increase their blood sugar levels. As a result, their glucose increases drastically to find an alternate fuel for the brain. In the end, the body forms potentially toxic keto acids.
If left untreated, this could be fatal, said Gabbay.
Prices Keep Increasing
Even though the lack of insulin could be fatal for those with the condition, the prices keep increasing.
According to a survey of those with type 1 conducted in March 2016, the average cost of managing the condition monthly in the US is a shocking $360.
Moreover, a single vial of insulin costs from $14 to $300, and a vial of Humalog costs $435. Besides, every person has a different insulin requirement. For some, one vial may be enough, but for others, more are necessary, says Gabbay.
Insurance Coverage Problems
With the already existing condition coverage, the passing of the ACA means that insurance companies all across the US can’t deny people with treatment or coverage.
While this was a positive change, it doesn’t solve the problem of insulin insecurity.
In other words, insurance companies, still control how much insulin patients get. As a result, they often determine the amount an average patient would use, even though the amount varies from person to person.
Therefore, one patient may need more insulin, while a different one will need less. It is like telling a person you can get this much air today, even though you need much more, said Samantha Caviness.
Her insurance covered only twenty-one days’ worth of insulin for a month if she didn’t change to a mail-order pharmacy.
This proposition is potentially risky since insulin has to stay cold and glass vials can easily break during transportation.
Since her doctor couldn’t prescribe her more insulin, she had to beg him for samples. As a result, she learned which day of the month would drop them off.
When Caviness was not able to purchase any more expensive vials, she used expired insulin pens and previously used syringes to extract insulin and transfer it to her pump.
Federal Investigation in the Pricing of Insulin
In November, Senator Bernie Sanders issued a federal investigation into the pricing of insulin. Moreover, Donald Trump in January accused the entire industry of “getting away with murder.” Senator Sanders agreed with this statement.
But, he still wonders if the Republicans had the guts to force the pharmaceutical companies to lower the prices.
The Republicans didn’t repeal the ACA, so Tom Price, the Health and Human Service Secretary, expressed the plans to completely dismantle some parts of the act by decreasing the essential benefits of coverage.
However, some people fear that these new changes will completely cut their prescription coverage.
People begin to worry about insulin availability every day. Their fears constantly increase with rising prices. Moreover, advocates have tried to emphasize this sometimes-invisible problem on all social media platforms.
Insulin access is often discussed in the diabetic community. However, people outside that community have little awareness of the severity of the situation.
Boyle’s story is a tragic outcome of the severe and deadly consequences of this healthcare system.
Unfortunately, his experience is not the only one. People who can’t afford to get insulin, often turn to alternative ways to obtain the funds they need.
In fact, on GoFundMe, there are 8.407 results for people who are trying to raise money to pay for their insulin injections. These numbers are expected to keep increasing every day.