Seven-year-old Gwen Fields bounced across the driveway of her Modesto home, headed for her “pokey pack,” the kid-size pouch with the gear to test her blood sugar.
Like others with Type 1 diabetes, Gwen is dependent upon insulin, and the cost is spiraling out of control. Yet diabetics have no choice — they have to pay to stay alive.
“Mom, I didn’t get enough blood,” Gwen said nonchalantly, “I have to do another pokey.” With the second finger stick, she meticulously collected the blood onto a test strip and then slid it into her glucometer.
It displayed a glucose of 233 — out of the safe range.
“Ooh, that’s a high one,” said Michelle Fields, mother of Gwen and her siblings, 5-year-old Farrah and 9-year-old Sloan. For her after-school snack, Gwen chose an Otter Pop frozen treat and Teddy Grahams, the bite-size graham crackers.
Fields added up the carbohydrates and calculated Gwen’s insulin dose. The math is too complicated for a second-grader, but Gwen easily used the dosing pen to give herself an insulin shot. Not a flinch, not a tear, just her routine.
“I have to count to 10 to make sure all the insulin goes in,” she said.
Gwen was diagnosed at age 5 and does two “pokeys” at least four times a day — that means at least 70,000 sticks by the time she’s 30.
For children who are first diagnosed between the ages of 3 and 9, researchers estimate that their lifetime cost approaches $400,000.
The cost of staying alive
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“Over the past 10 to 15 years, we have increases in both Type 1 and Type 2,” said Dr. Assad Elbashir, “Type 2 is related to the epidemic of childhood obesity.” Elbashir is pediatric diabetes specialist at Valley Children’s Pelandale Clinic. He said Type 1 also is increasing, but the cause is not known.
“Diabetes makes a huge impact on the health system, and it’s expensive to manage,” Elbashir said.
For an individual, monthly medical expenses may exceed $1,000 . Those costs include insulin, supplies such as glucose monitors and test strips, alcohol swabs, syringes, needles and bandages. This doesn’t include other necessary medications, quarterly doctor visits, sick visits to the emergency room or hospitalizations.
Children from lower-income families generally qualify for California Children’s Services, or CCS, which provides comprehensive coverage for disabling diseases, including diabetes care.
“The ones that struggle are middle-class families,” said Dr. Nadia Sattar, “They have more out-of-pocket expenses and can’t take advantage of new technologies because of costs.”
Sattar, a pediatric endocrinologist at Valley Children’s, is Gwen’s diabetes doctor.
Sattar said many of the new tech tools, such as continuous glucose monitors and insulin pens, are easier to use and work better for children.
Middle-class families may have earnings too high to qualify for Medicaid (MediCal in California) or CCS, but not enough to afford comprehensive health insurance.
For some working families, even if they have insurance, the out-of-pocket expenses can be crushing.
One Humalog (fast-acting insulin) cartridge costS $137.88 and lasts about four weeks, Fields said, adding, “This is out-of-pocket for us.” The Fields family has Aetna PPO, considered a robust insurance plan, through her husband’s job.
“Our deductible is $5,000 every year, and some things don’t count towards it,” Fields said. “As a family, we’re constantly looking at the bottom line.”
For adults, paying for diabetes care is even more daunting, in part because many are uninsured.
“I have good insurance. I have a $40 co-pay for my insulin,” said Gaetana Drake. “But I noticed my last receipt from Walgreens said I saved $874 because of my insurance.”
Drake, 64, has been dealing with diabetes for 35 years. It started as a complication of necessary steroid treatment. “Even with insurance, I spent $7,000 just for my diabetes last year,” she said. “It’s an unmanageable expense without insurance.“
Why is insulin so expensive?
Canadian researchers identified insulin in 1921 and sold the patent to the University of Toronto for $1. They wanted anyone who needed the lifesaving medication to have access.
Their charitable spirit has long since been abandoned by the business of pharmaceuticals. New insulin formulations have evolved from incremental changes to improve how it’s metabolized. Those revisions allow for patents, often cited as the rationale for high pricing by pharmaceutical companies.
Nearly 100 years later, no generic versions of insulin are available.
“There’s no reason (we) haven’t mass-produced generic versions of insulin to keep it affordable,” said Jeffrey Lewis, president and CEO of Legacy Health Endowment, a nonprofit organization focused on health care, serving 19 ZIP codes in Stanislaus and Merced counties.
He wrote an opinion piece for The Bee in July that included several links to finding the drug at lower costs.
Lewis said insurance companies and pharmacy benefit managers (PBMs) are big factors in driving up costs. PBMs negotiate with drug companies about which medications are chosen for a health plan’s formulary. The process is not transparent and may benefit the insurance plan more than patients.
“It’s a burden on the economy and the health care system,” said Elbashir, “We need to find a way to lower those costs, especially for medications.”
Fighting back against the rising drug costs
After receiving multiple complaints from constituents, including Drake, Rep. Josh Harder, D-Turlock, commissioned a study looking at diabetes medication pricing in his Congressional 10th District.
The study found that insulin prices for the uninsured in the Central Valley were particularly egregious, costing more than 12 times those in Canada.
“Our estimates are that to produce these medicines costs $5 to $7,” Harder said during a meeting in Modesto in September.
“We want companies to continue research developing new treatments for cancer, diabetes and others,” he said, “But this doesn’t seem to be the case. It seems to be price gouging.”
Harder said the House of Representatives passed a law addressing the rising cost of prescription drugs, including increasing the availability of generic drugs, but the bill has been sitting on Republican Sen. Mitch McConnell’s desk for months.
Harder also co-sponsored a bill to allow Medicare, the government health insurance for people older than 65, to negotiate prices with drug companies. Medicare is the largest buyer of medications in the U.S. and the program is barred by law from negotiating drug prices.
Sattar emphasized that the Central Valley needs more community resources for education and prevention, especially related to obesity and type 2 diabetes.
“The foundation has chosen a path to do what we can — we can educate people, said Lewis. “We can provide programs for insulin and supplies to help underwrite those costs.” He said helping families with such burdensome costs is a great use of charitable dollars to aid the community.
The foundation’s website also has information about drug company programs for reduced-cost insulin, such as coupons and rebates.
“She’s my little warrior fighting a chronic disease,” Fields said of Gwen. “I deal with insurance, the doctors and the co-pays. It’s my job to disrupt this for Gwen and everyone affected.”
This story was produced with financial support from The Stanislaus County Office of Education and the Stanislaus Community Foundation, along with the GroundTruth Project’s Report for America initiative. The Modesto Bee maintains full editorial control of this work.
What is Diabetes?
Diabetes mellitus (mel-a-tus), DM, is a chronic disease associated with high blood sugar levels due to problems with insulin production, its ability to work, or both.
If blood sugar stays too high, it causes damage to organs, which leads to complications such as blindness, kidney failure and heart disease, among others. But if it’s too low, organs can’t function, causing death.
Type 1 DM previously was called “juvenile-onset” because it usually occurs in children, teens and young adults. It results from the body’s own immune system attacking the pancreas, leading to little or no insulin production. Lifestyle and diet are not risk factors.
Type 2 DM often is called “adult-onset” because is usually occurs in people 45 and older and results from insulin not being effective. The frequency in younger people is surging, related to the rising rates of childhood obesity. Family history and obesity are risk factors.