Living well with type 1 diabetes requires a great deal more than a healthy diet and some regular exercise.
Type 1 diabetes is an unpreventable autoimmune type of diabetes that causes a person to no longer produce insulin, the hormone all mammals need in order to stay alive.
A person with the disease must have quarterly doctor appointments that come with a variety of blood tests to assess whether their medications need to be adjusted and if their overall blood levels are in the safest possible range.
They also need a large amount of life-saving insulin and medical technology.
Paying for that technology and treatment out of pocket would be nearly impossible for them.
A study published in the July issue of Health Affairs from the University of Michigan discovered that 1 out of every 4 adults with type 1 diabetes have experienced a minimum of 30 days during which they had no health insurance coverage.
More importantly, the average length of time those people went without insurance coverage was three years.
The cost of diabetes
With the cost of insulin and test strips alone costing nearly $1,000 for one month’s supply, going 30 days without insurance can be devastating financially to people with diabetes, as well as to their overall well-being.
The study reports that people with type 1 diabetes with a gap of insurance coverage for more than 30 days are five times more likely to visit the emergency room or urgent care center.
If they live in poverty or a low-income household, they can easily find themselves choosing between paying their rent over buying more test strips or insulin for a month.
This decision leaves them with no choice but to either become homeless or put their life in grave danger by taking less insulin than they need in an effort to make their vial of insulin last longer.
Today’s advanced technology of diabetes treatment includes an insulin pump and a continuous glucose monitor (CGM). It enables people with type 1 diabetes to live safer lives while maintaining blood sugar levels far closer to normal levels.
Those items, however, are a nearly impossible expense without insurance.
A new insulin pump and CGM cost about $5,000 each out of pocket. It’s more than $500 per month for ongoing supplies.
Even a few months can be devastating
A gap in coverage directly disrupts a patient’s overall blood sugar stability and worsens hemoglobin A1c levels. This measurement indicates blood sugar levels over a period of two to three months, therefore increasing their risk for developing complications over time, such as retinopathy or neuropathy.
Andrew Hair found himself without insurance for just a few months at age 23 when he was laid off from his job.
Prior to losing his healthcare coverage, he was using the most basic methods to manage his type 1 diabetes. That included syringes, insulin, and a basic glucometer for testing his blood sugar.
However, those few months without insurance were some of the most stressful he’s ever endured.
“That gap in health insurance added significant stress to my life,” Hair told Healthline. “Thankfully, I was already a subscriber of One Drop for my test strips.”
One Drop is a groundbreaking “disturbance” in the diabetes technology and pharmaceutical world. It was founded by Jeff Dachis, who has diabetes himself.
One mission of the company is to help people like Hair by providing unlimited test strips for a monthly subscription fee.
The strips are mailed directly to the consumer without any prescriptions from a doctor or approval from an insurance company.
Without insurance, traditional test strips from a pharmacy would cost more than $1 per strip. The average patient uses four to eight test strips per day.
Most insurance companies limit patients to four strips per day unless a clear need for more is explained in writing by a doctor.
Patients would then pay their monthly copay, generally between $30 and $40, for that predetermined, limited number of strips per month.
A $39.99 monthly subscription with One Drop means Hair could order more test strips at any time to use with his One Drop meter.
But getting insulin that’s affordable isn’t possible — yet.
While there are many patient-assistance programs provided by pharmaceutical companies, they’re often based on your total annual income, not your momentary lack of income and insurance coverage.
Getting immediate assistance isn’t what they’re designed for. And becoming qualified for one of these programs isn’t a quick process.
“My out-of-pocket insulin costs during those few months without insurance were close to $600 per month,” explained Hair. “And I’m lucky that I don’t need as much insulin as the average diabetic male.”
While Hair continued to hunt for a new job, his fear of being unable to afford any insulin only grew worse. It added stress, depression, and anxiety to his daily life.
“I’m grateful to be employed again today, but being without insurance for just a few months gave me a perspective I didn’t have before,” he said. “I cannot imagine how hard it must be to manage diabetes without insurance for an even longer period of time.”
Managing diabetes can require other unexpected treatments and procedures, too.
Even with well-managed diabetes, anyone with type 1 diabetes can develop complications, such as cataracts.
“I had to pay over $8,000 out of pocket for cataract surgery in 2008,” said Ceara Ryan, who received a type 1 diabetes diagnosis 40 years ago when she was 8 years old.
While cataract surgery isn’t generally an emergent necessity, delaying the surgery can cause your vision to temporarily worsen and prevent your optometrist from treating other conditions, such as diabetic retinopathy.
Ryan told Healthline that during her gap in insurance coverage, she had a stock of supplies to use in her insulin pump.
That helped her avoid having to switch back to injections or pay more than $1,000 a month to continue using her pump.
But she did pay a price physically in trying to use every last drop of insulin in her pump.
“I would leave my pump sites in for as long as possible,” Ryan said.
Insulin pump infusion sites sit within the top layer of the skin where the insulin is then delivered. They’re meant to be worn for no more than three days, even though there’s usually 30 or more units of insulin still in the reservoir when it’s due to be replaced.
“I was left with massive amounts of scar tissue everywhere on my torso,” said Ryan.
Still uninsured, Ryan said she’s struggling now to pay for the medical expenses that keep her alive.
Right place, right time
Others are able to endure a period without insurance thanks to the right connections.
After being let go from her job, Samantha Galvez knew that after her insurance coverage expired, she’d have access to insulin and test strips from a less traditional resource: diabetes camp.
Galvez, now 26, received a type 1 diabetes diagnosis when she was 13 years old.
She was a counselor at a diabetes camp during the gap in her healthcare coverage.
“Fortunately, diabetes camp was just around the corner, so I knew I’d be given a lot of extra insulin once the camp was over,” Galvez told Healthline.
This simple resource likely saved her thousands of dollars, as well as prevented her from ever having to “skimp” on her insulin and let her blood sugars run higher to help make one vial last as long as possible.
“For me, the hardest part of not having health insurance was getting my non-diabetic prescriptions and making appointments with diabetes specialists,” explained Galvez.
She did pursue Medicaid and was qualified for a period of time, but she found the approval process convoluted and encountered many roadblocks each time she tried to get the healthcare she needed.
“I ended up paying hundreds of dollars out of pocket for at least two prescriptions because Medicaid made things so confusing,” she said. “Fortunately, I knew I’d only be unemployed for two months. Knowing I’d be starting a job soon, with health insurance, was the only reason I didn’t completely lose my peace of mind. It kept my stress at bay.”
More than expected
Researchers in this latest study said they weren’t surprised that people with type 1 diabetes were so severely affected by a lack of health insurance.
However, they said the frequency in which people experienced these gaps was unexpected.
“Type 1 diabetes requires intensive daily management in order to simply remain alive, so interruptions to care and coverage of insulin and supplies can pose a major risk,” said Mary A. M. Rogers, PhD, the University of Michigan Medical School researcher who led the study, in a press release. “While we expected gaps in coverage to affect health in some way, the size of the effect and the frequency of gaps were striking.”
Rogers attributes the frequency of these gaps to the increasing trend of short-term “gig” types of employment and the growing number of private employers who don’t offer health insurance.
“Our study provides evidence of fragmented care for adults with type 1 diabetes in the United States,” said Rogers. “Such gaps in healthcare have been noticed for people who go in and out of Medicaid coverage, but we report that it also occurs in adults who have private health insurance. We know that providing continuity of care is important for patients with diabetes and is associated with lower mortality.”
Rogers predicts that this problem will only get worse with time as insurance coverage in the United States becomes a more significant issue caught within a never-ending political debate.
“This problem is not going away,” said Rogers. “If anything, fragmented care is likely to increase with projected trends. Yet, access to medical care is essential for life for people with type 1 diabetes. Providing access to medical services for people with chronic conditions is a problem that America has not yet fully resolved.”