Health and wellness touch each of us differently. This is one person’s story.
When Shelby Kinnaird was 37 years old, she visited her doctor for a routine checkup. After her doctor ordered blood tests, she learned that her blood sugar levels were high.
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But living with type 2 diabetes isn’t just a matter of learning to manage blood sugar. Juggling the cost of the condition — from insurance premiums, copays, and medications to lifestyle interventions like exercise classes and healthy food — presents unique challenges.
Initially, after Shelby’s diagnosis, her costs were relatively small and mainly related to making healthier day-to-day choices. Shelby’s doctor referred her to a diabetes educator to help her learn how to manage type 2 diabetes, using diet, exercise, and other lifestyle changes.
With the help of her diabetes educator, Shelby developed new daily habits.
She started to track all of the food she ate, using an approach known as the “exchange system,” to plan meals that would help keep her blood sugar levels down.
She started to exercise more, going for walks every day after work.
She also asked her boss if she could travel less. It was hard to stick to a healthy diet and exercise routine while traveling as much as she had been for work.
Within the first year of her diagnosis, Shelby lost at least 30 pounds and her blood sugar levels dropped to a healthy target range.
For the next few years, she was able to manage her blood sugar levels using inexpensive lifestyle strategies alone. At this point, her costs were low. Some people with type 2 diabetes can manage the condition without medication for several years or longer. But eventually, most need medication to keep their blood sugar within target range.
Over time, Shelby’s doctor added one medication and then others to her treatment plan.
As a result, her costs of living with diabetes went up — at first slowly and then more dramatically.
The cost of major life changes
In the early 2000s, a couple of years after her diagnosis, Shelby went through several big changes in her life.
She separated from her first husband. She moved from Massachusetts to Maryland. She shifted from full-time work to part-time work, while returning to school to study publications design. After graduating, she left the software engineering company where she had worked to start her own business.
Life got hectic — and she found it harder to prioritize managing diabetes.
“A lot of life changes happened at the same time,” she said, “and diabetes, at first, it was my highest priority, and then I think, ‘oh things are fine, I’m doing well,’ and all of a sudden, it moves lower on the list.”
In 2003, blood tests showed that her blood sugar levels were no longer in her target range. To help get her blood sugar levels down, her doctor prescribed metformin, an oral medication that’s been used to treat type 2 diabetes for decades. Metformin is available as a generic drug at a low price or even for free.
“It has never cost me more than $10 a month,” Shelby said.
“In fact, when I [later] lived in North Carolina, there was a grocery store there that gave metformin for free,” she continued. “I think because the drug’s been around so long, it’s so cheap, it’s like if we give you metformin for free, you’ll come here for other stuff.”
Recall of metformin extended releaseIn May 2020, theFood and Drug Administration (FDA) recommended that some makers of metformin extended release remove some of their tablets from the U.S. market. This is because an unacceptable level of a probable carcinogen (cancer-causing agent) was found in some extended-release metformin tablets. If you currently take this drug, call your healthcare provider. They will advise whether you should continue to take your medication or if you need a new prescription.
Type 2 diabetes progresses and so do the costs
In 2006, Shelby moved with her second husband to Cape Hatteras, a chain of islands that stretches from mainland North Carolina into the Atlantic Ocean.
There were no diabetes care centers or endocrinologists in the area, so she relied on a primary care doctor to help manage her condition.
She continued to take daily doses of metformin, eat a healthy diet, and exercise regularly. But after several years, she found those strategies weren’t enough.
“I got to a point where you think you’re doing everything right, and no matter what you eat, the blood sugar goes up,” she said.
To help lower her blood sugar levels, her primary care doctor prescribed an oral medication known as glipizide. But it caused her blood sugar levels to drop too low, so she stopped taking it and “got more strict” with her diet and exercise habits to try to keep her blood sugar in the target range.
When Shelby and her husband moved to Chapel Hill, North Carolina, in 2013, she was still struggling to manage her blood sugar levels. Her new primary care doctor referred her to an endocrinologist.
“I went to see an endocrinologist in their diabetes center there,” Shelby said, “and she basically said, ‘Don’t beat yourself up, this is a progressive thing. So, even if you do things right, it’s gonna catch up with you eventually.’”
The endocrinologist prescribed an injectable medication known as Victoza (liraglutide), which Shelby used with metformin and lifestyle strategies to lower her blood sugar levels.
At first, she only paid $80 for each 90-day supply of Victoza.
But within a few years, that would change in a big way.
The high cost of keeping insurance coverage
When Shelby was first diagnosed with diabetes, she was covered by employer-sponsored health insurance.
After she left her job to begin a freelance career, she paid to keep her old insurance plan for a brief period before purchasing private insurance on her own. At that time, finding private health insurance could be difficult for those with a preexisting condition such as diabetes.
Then the Affordable Care Act (ACA) was implemented in 2014 and her options shifted. Shelby and her husband enrolled in a Blue Cross Blue Shield plan through North Carolina’s ACA exchange.
In 2014, they paid $1,453 per month in combined premiums and had a family in-network deductible of $1,000.
In 2015, that changed. Their monthly premium fell slightly, but their family in-network deductible jumped to $6,000. When they moved from North Carolina to Virginia later that year, their premiums dropped a little more to $1,251 per month — but their deductible grew even higher, increasing to $7,000 per year.
As a family, they got a small financial break when Shelby’s husband became eligible for Medicare. Her individual premium fell to $506 per month, and her individual in-network deductible was set at $3,500 per year.
But the fluctuations in costs didn’t stop. In 2016, Shelby’s monthly premiums fell slightly to $421 per month — but her in-network deductible skyrocketed to $5,750 per year.
In 2017, she switched to Anthem, opting for a plan with monthly premiums of $569 and an in-network deductible of only $175 per year.
That Anthem plan provided the best insurance coverage that she’s ever had, Shelby said.
“The coverage was phenomenal,” she told Healthcare Website. “I mean, I did not go to a doctor or for a medical procedure that I had to pay a single thing [for] the whole year.”
“The only thing I had to pay for was prescriptions,” she continued, “and Victoza was 80 bucks for 90 days.”
But at the end of 2017, Anthem dropped out of Virginia’s ACA exchange.
Shelby had to enroll in a new plan through Cigna — it was her only option.
“I had one choice,” she said. “I got a plan that’s $633 a month, and my deductible was $6,000, and my out of pocket was $7,350.”
On an individual level, it was the most expensive plan out of any of the health insurance coverage she’d had.
Coping with changes and rising costs
Under Shelby’s Cigna insurance plan, the cost of Victoza rose 3,000 percent from $80 to $2,400 for a 90-day supply.
Shelby was unhappy about the increased cost, but she felt that the medication worked well for her. She also liked that it offered potential benefits for her cardiovascular health.
Although cheaper drug options were available, she was concerned that they came with a higher risk of hypoglycemia, or low blood sugar.
“I’d hate to move to some of the cheaper medications,” Shelby said, “because they can cause your blood sugar to go low, so then you’ve got to worry about lows.”
She decided to stick with Victoza and pay the price.
If she was less financially privileged, she would have made a different decision, she said.
“I feel very fortunate that I can pay $2,400 for medication,” she said. “I understand that other people can’t.”
She continued on the same treatment plan until last year, when her insurance provider told her it would no longer cover the drug — at all. For no apparent medical reason, her insurance provider told her it wouldn’t cover Victoza but would cover another medication, Trulicity (dulaglutide).
The total cost of Trulicity was set at $2,200 for each 90-day supply in 2018. But after she hit her deductible for the year, she paid $875 for each refill purchased in the United States.
Manufacturers’ “Savings Cards” are available for both Trulicity and Victoza, as well as other medications, which can help people who have private health insurance with costs. The maximum savings for Trulicity is $450 for a 90-day supply. For Victoza, the maximum savings is $300 for a 90-day supply.
In December, Shelby and her husband visited Mexico and stopped by a local pharmacy to do a price comparison. For a 90-day supply, the medication was priced at $475.
At home, Shelby checked on her insurance provider’s quote for Trulicity for 2019. After putting the medication in her cart for an online order, the price came up at $4,486.
Now, I don’t know if that’s what I’m actually gonna end up paying,” Shelby said, “because sometimes their estimates are not exactly [right]. But if it’s that, I guess I’m gonna have to — I don’t know. I don’t know if I’m gonna pay it or I’m gonna move to something else.”
Paying for the costs of care
Medication is the costliest part of Shelby’s current type 2 diabetes treatment plan.
But it’s not the only expense that she faces when it comes to managing her health.
In addition to buying diabetes medications, she also uses baby aspirin to lower her risk of heart attack and stroke, statins to reduce her blood cholesterol levels, and thyroid medication to treat hypothyroidism.
These health issues often go hand-in-hand with type 2 diabetes. There’s a close connection between the condition and hypothyroidism. Cardiovascular issues, such as heart attacks, strokes, and high blood cholesterol, are also more common in people with type 2 diabetes.
The medical and financial costs of type 2 diabetes add up. Shelby has also bought hundreds of test strips each year to monitor her blood sugar levels on a daily basis. Sometimes, she’s found it cheaper to buy test strips off the shelves, rather than through her insurance provider. Last year, she got test strips for free in exchange for pilot testing a manufacturer’s new glucose monitor.
More recently, she bought a continuous glucose monitor (CGM) that tracks her blood sugar on a constant basis without test strips.
“I can’t say enough good about it,” Shelby told Healthcare Website. “I think they should just prescribe these to everybody who gets diabetes, and they really need to be covered by insurance.”
“I can’t believe the things I’m learning,” she continued, “just from being able to see a graph of where my blood sugar’s been all day.”
Because Shelby doesn’t take insulin, her insurance provider won’t cover the cost of the CGM. So she’s paid $65 out of pocket for the reader itself, as well as $75 for every two sensors that she’s purchased. Each sensor lasts for 14 days.
Shelby has also faced copay and coinsurance charges for specialist appointments and lab tests. To help manage and monitor diabetes, she visits an endocrinologist and undergoes blood work about twice a year.
In 2013 she was diagnosed with nonalcoholic fatty liver disease (NAFLD) — a condition that may affect
Shelby also pays for an annual eye exam, during which her eye doctor checks for signs of retinal damage and vision loss that affect many people with diabetes.
She pays out of pocket for monthly massages and weekly private yoga sessions, which help her manage stress and its potential effects on her blood sugar levels. Less expensive options are available — such as at-home yoga videos and deep breathing exercises — but Shelby engages in these practices because they work well for her.
Making changes to her diet has also affected her weekly expenses, since healthy foods often cost more than less nutritious options.
Fighting for more affordable treatment
In many ways, Shelby considers herself lucky. Her financial situation is pretty solid, so she hasn’t had to give up “critical” things to afford her medical care.
Would I rather be spending my money on other things, like travel, and food, and a new car? Of course,” she continued. “But I’m fortunate enough that I don’t have to give things up in order to afford it.”
So far, she’s avoided serious complications from diabetes.
Those complications can include heart disease and stroke, kidney failure, nerve damage, vision loss, hearing problems, severe infections, and other health issues.
Such complications can negatively affect the health and quality of life of people with diabetes, while significantly increasing their medical costs. A 2013 study found that for women diagnosed with type 2 diabetes between 25 and 44 years old, the average lifetime direct medical cost for treating the condition and associated complications was $130,800.
In the study, complication-related expenses accounted for about half of that total price tag. That means avoiding those complications could be a big money-saver.
To help raise awareness about the financial challenges that many people with type 2 diabetes face, Shelby became a patient advocate.
“The American Diabetes Association sponsors something every year called the Call to Congress in March,” she said. “I’ve been to the last two, and I’m going again in March. So that’s an opportunity to tell your lawmakers stories like this.”
“I take every opportunity I can to make my elected officials aware of everything that we go through,” she added.
Shelby also helps to run two support groups for people with type 2 diabetes, through an organization known as DiabetesSisters.
“It’s just a group of people who all are dealing with what you’re dealing with,” she said, “and just the emotional support that you kind of give and take in those kinds of environments has been tremendous.”
“I think anybody who has any kind of chronic condition should try to find a group like that,” she said, “because it helps tremendously.”