Today is World Diabetes Day, and we are raising awareness by shedding light on what is quickly becoming one of the most pressing issues for far too many Americans with diabetes: affordability. We talked to individuals across all walks of life to understand how those affected by the higher-than-ever supply and services costs are dealing with the crisis and what they think needs to happen to make a difference.

Alex Quinn

Alex Quinn was diagnosed with type 1 diabetes when she was three years old. Today, she lives in Georgia with her supportive partner and other human and animal family members, including a Blue Nosed Pitbull and two cats. Alex works full-time repairing, restoring, and building antique and custom chandeliers.

Alex’s job does not offer health insurance. “I pay cash for everything. That puts my monthly diabetes expenses at a higher cost than my rent and bills combined. At the moment, one office visit to the Endo would cost me two days’ worth of income. I haven’t been to the Endo in over a year because I can’t afford that expense, plus the time off,” Alex explains.

Alex also gave up both her insulin pump and continuous glucose monitor (CGM) for financial reasons, although she notes that today, she is pleased with her management and is “happier without the added stress of technology.”

However, affording insulin is an ongoing struggle. “My biggest struggle right now is how to afford my Tresiba. It costs almost $500 for five pens. Some months it comes down to the choice of paying for my diabetes supplies or paying for my bills/rent. My monthly expenses for diabetes care cost more than one-quarter of my income. I make more than twice the minimum wage, and I still live paycheck to paycheck because of this expense,” Alex describes.

Like many others in her situation, Alex often relies on supply donations from friends who have health insurance. She is no stranger to reusing supplies, like syringes. “I am living off the kindness of some internet friends at the moment, but once that supply runs out I don’t have a solid plan in place,” she explains.

Alex’s mom, who lives close to the Mexican border, also helps out by purchasing insulin abroad. “I am also looking into buying from a Canadian pharmacy that ships to the US. I have also used pay-it-forward groups online to get supplies when in desperate need. I’ve gotten free samples from the endocrinologist, and I’ve traded supplies with other diabetics,” Alex says.

I asked Alex what she thinks needs to happen in the US to reduce this burden that far too many are facing.

In my lifetime, I have seen the cost of the exact same medication I have taken for the last 20 years almost quadruple. [We need] easier access to affordable insulin. I should not have to beg for freebies from the doctor, borrow insulin from friends with insurance, or go to a foreign country in order to be able to afford my medication. If the same medication costs $50 in Canada or Mexico, but it costs $400 in the US, clearly there’s something wrong with our system.

Emily Phillips

Emily Phillips was diagnosed with type 1 diabetes when she was seventeen years old. She is a mom of two who works full-time as the president of her 4th generation family-owned and operated packaging distributor company in New Hampshire.

Emily has a very high-deductible insurance plan that requires her to pay many thousands of dollars out-of-pocket before any diabetes supplies are covered. She routinely accepts insulin and other supply donations and is considering traveling to Canada to purchase insulin. She also does not hesitate to use expired test strips, insulin, Omnipods, and CGM sensors.

For most of her life with diabetes, Emily used an insulin pump to manage the condition. Most recently, the high cost of supplies has forced her to give up using the device.

“I just switched off of my Omnipod after 10.5 years because I have run out of supplies and didn’t want to pay for more…so, I am now on multiple daily injections,” Emily describes. So far, this change has negatively affected her blood glucose control as well as her emotional state of mind. “It does wear you down psychologically because it’s more work,” she says.

Emily still uses her Dexcom CGM, which she describes as “essential” and would be “the last thing [she would give up for financial reasons].” However, she is worried about eventually not being able to have her CGM. “Less than a month ago, I bought a transmitter for my G5 via the online black market,” she describes. She also has many (often expired) sensors that she reuses for several weeks. She hopes to have enough CGM supplies until the end of the year.

I applied for financial assistance [for both Dexcom and Omnipod], but I make too much money to be considered. Even though I make X amount of money, [these companies] don’t know what I pay in student loans, childcare, what the rest of my family’s issues are. They appear charitable, but it’s a joke.

I asked Emily what she thinks the main reason behind her struggle to afford supplies is. “I think it’s company greed. I run a small business. I know that profit margins are necessary,” Emily says. However, considering how much it costs to produce a vial of insulin and how much it is marketed for, these margins appear outrageous. “I think it will come down to the congressional level, to fix any of this,” she remarks.

Although Emily considers her family to be upper-middle class, spending over $1,000 on diabetes supplies every month is simply too much. “It’s like being a prisoner. I can’t not use it,” she says. At the end of the day, she is willing to sacrifice having the “luxury” of an insulin pump so that she can do other things that she actually wants to do, like go on vacation with her family.

Keith Stinnett

Keith Stinnett is a retired firefighter who was diagnosed with type 1 diabetes at thirty-two years old. His son was also diagnosed with the condition at age four, as was his daughter when she was in her early thirties.

While Keith feels fortunate to have good coverage for his diabetes supplies as a “job perk” of working as a firefighter in Texas for nearly 30 years, he is outraged at the “ever-increasing cost of staying alive,” and is especially nervous for the future of his two type 1 children.

I am very worried for my children. The only things I have passed on to them are devilish good looks and diabetes mellitus. If the cost of living with this disease keeps rising, they will be faced daily with their own mortality vs. Eli Lilly’s profit margin. The drug companies’ monopoly on life saving medication is a dangerous thing. Our lives are slowly being held for ransom and soon the only ones left will be the truly needy and the truly greedy.

“When I was first diagnosed, I could get all my drugs and supplies for about $25 a month. Now my treatment plan runs about $300 a month. I have never used the new tech products because of the outrageous prices,” Keith explains. When it comes to his children, he notes that affording “life-saving equipment is a constant struggle” and that sharing supplies like insulins, test strips, and syringes is commonplace.

Who is at fault? “I do believe the drug companies have lobbied their way into a constantly producing cash cow and profits have risen greatly at the expense and suffering of anyone saddled with this disease,” Keith says.

Laddie Lindahl

Laddie was diagnosed with type 1 diabetes at age twenty-four. Today, she lives in Minnesota with her husband and black Labrador, and also blogs about life with diabetes on her website Test, Guess, and Go.

Thankfully, Laddie has not experienced the diabetes-associated cost struggles that are common to so many, at least not in the traditional sense. However, since switching to Medicare a year and a half ago, Laddie notes that obtaining the adequate quantities of insulin pump infusion sets has been problematic.

Because of my difficulty getting sufficient pump infusion sets, I keep an eye out in a local Facebook group for people giving away unneeded sets. I have greatly benefited from people who are giving away Animas infusion sets because of moving to different pumps. I have always saved extra pump tubing and am able to substitute Tandem tubing to use those sets. I am always very careful to make sure that there are not others in greater need who want those supplies.

Laddie passionately advocates for improving diabetes affordability for all.

I am constantly aware of the cost of my diabetes care and know how vulnerable those of us who require insulin are. Today’s out-of-control healthcare costs are terrifying, especially in today’s political climate. I have always been one of the lucky ones when it came to access to insulin and diabetes supplies. But I know people who are not and I worry for all of us with diabetes as I look to the future. As someone with type 1 diabetes, I want the public to understand that insulin is a life or death medication for me.

In one of her blog posts, Then and Now, Laddie details the paramount differences in diabetes supply and service costs today vs. several decades ago.

“I strongly believe that we have to institute price controls for medications in the United States and that all citizens should have access to basic healthcare,” Laddie concludes.

Indisputably, affording diabetes is becoming a real issue for far too many people, across all walks of life. Do you struggle to afford your diabetes care? What have you had to do to survive? What do you think needs to be done to improve this crisis and lift the burden?

Read more about Animas, blood glucose monitoring, continuous glucose monitor (CGM), cost of diabetes, cost of health care, cost of insulin, Dexcom, diabetes management, insulin, insulin pumps, Intensive management, Lilly Diabetes (Eli Lilly), NovoLog, Omnipod, Tandem, Tresiba insulin, type 1 diabetes, type 2 diabetes.