Mindi Patterson knows better than most the high cost of insulin is about more than money. She lost her sister-in-law because of it.

Patterson is a member of the board of JDRF Southwest Ohio, which is working to raise awareness of insulin affordability, or more precisely, insulin inaffordability.

Her sister-in-law, Meaghan Carter, was a Type 1 diabetic. Meaghan, 47, died Christmas Day 2018, about six months after telling Patterson that she had only 30 units of insulin remaining in her pump – and no more.

“She had just lost her job, and she lost her insurance. She didn’t want to call her parents. She wanted to figure it out on her own, and I said, ‘Fine. Come on over. We’ll take care of you. We’ll figure it out.’”

Roc, Mindi’s husband and Meaghan’s brother through adoption, was misdiagnosed as Type 2 in 2011. He was correctly diagnosed as LADA (latent autoimmune diabetes in adults) Type 1 in April 2018.  Roc and Mindi have two sons, Martin and Pierce, who are also Type 1.

Mindi gave Meaghan a list of resources that managed to secure about three months of insulin from the diabetic community for Meaghan, a nurse whose salary was too high to qualify for much financial assistance. Sample insulin from her doctor wasn’t as readily available as in the past.

“The last thing I wrote on the piece of paper, as an extreme last resort, is Wal-Mart insulin. The $25 insulin you can buy at Wal-Mart,” Mindi remembers. She explained it would be necessary to have a doctor help with getting the dosage right since it is an outdated form of treatment that is extremely unpredictable and requires extra vigilance and blood testing.

When Mindi checked on Meaghan, asking her about her blood sugar and A1C numbers, Meagan said they “were doing better,” although her A1C was 11.5, which is considered high and an indication that she was rationing her insulin.

Christmas Eve 2018, Meaghan started vomiting.

Cookie, Meaghan’s new roommate, was working Christmas Day. The two argued over Meaghan’s health. They both thought she had the flu. Cookie, a health care administrator, wanted Meaghan to go to the hospital, but Meaghan refused.

“I’m sure too, she doesn’t have insurance, and so a hospital visit’s going to cost money. She had a new job lined up. The new job’s supposed to start the week after Christmas. Her previous job that she left before that, her paycheck was supposed to get deposited. It did. It got deposited on the 26th, so she would have had money on the 26th, so I think in her mind, wait a day,” Mindi said.

When Cookie came home, Meaghan was on the couch. Cookie thought she was sleeping.

“When she got up in the morning, Meaghan was blue,” Mindi said.

“So what we can piece together, going through the apartment and clearing everything out, we found the Wal-Mart receipt. She bought the Wal-Mart insulin on the 20th. We think she probably just put that into her pump without adjusting anything in it. She didn’t have the insulin to do much. There was no insulin in the refrigerator. There was half a vial of test strips, so we know she wasn’t testing. Based on the meter, when we checked the meter, it was maybe once or twice a day at the most. So … “

Meaghan’s story illustrates the critical problem of insulin affordability. According to The Journal of the American Medical Association as cited in an October 2016 Washington Post story, insulin costs increased218 percent between 2002 and 2013. A vial of Humalog, which cost $21 in 1996, cost $255 in 2016. Vials usually last about two weeks.

“Right now, I think there’s definitely a big push. Recently, 12 letters were sent out to different pharmaceutical companies asking, basically like an investigation to see their pricing and how their pricing works and whether they’re actually doing things above board, which I think is fantastic. Let’s take a look at it. Because when they raise prices, it seems they all raise prices at the same time and by the same amount.”

Jeff Kroger is JDRF Southwest Ohio’s governmental advocate. He cited progress made through the #Coverage2Control campaign.

Coverage2Control is a push for across-the-board insurance coverage for diabetes-related treatments.

“50,000-plus people signed the #Coverage2Control petition and 12 major groups signed on as partners. JDRF hand-delivered your petitions to the 25 largest health insurance companies, and supporters sent thousands of personalized follow-up messages,” Kroger said in an email.

“Insurance will cover one formulary but not another formulary, even if your doctor has prescribed this one and not this one, so a lot of the coverage control is trying to make it so that those things are acceptable across the board with a variety of insurance as well as Medicaid and Medicare being able to cover CGMs, because you can age out of that,” Mindi said.

“Once you get to a certain age, you won’t be able to use the pump you’ve been using for years, which is not great either. They have definitely talked to, they have a ‘Promise Me’ program where advocates can go and sit down with senators and representatives and ask them to remember them when they go in and do their political coverage, their SDPs and different bills like that. More accessibility.”

Kroger said that United HealthCare, the nation’s largest insurer, has expanded its coverage to more than one kind of insulin pump. “Now all 25 of the largest health plans cover multiple brands of insulin pumps and most cover all brands,” Kroger wrote. “All 25 of the nation’s largest health plans now cover artificial pancreas systems, including Anthem, which reversed its policy after hearing from JDRF and the T1D community.”

Kroger also said that United HealthCare extended the drug discounts it receives to members in fully-insured plans, forcing Aetna to do the same.

JDRF Southwest Ohio Board President Jonathan Faulkner encourages everyone to resonate the message of insulin accessibility.

“The reality is this: the cost of insulin is as important as the continued development of new and more effective diabetic interventions, pumps, monitoring devices, medicines, and the effort to ultimately cure diabetes,” Faulkner said in an email.

“Unfortunately, over the past six years, the cost of insulin has skyrocketed. Some sources have stated that the cost of insulin has more than tripled in the last six years. Other sources, while perhaps not as scientific, frequently list insulin as one of 10 most expensive liquids on the planet!”

The fight is personal for Mindi.

“When Meaghan was diagnosed in 2000, you could get a vial of Novalog or Humalog for $30, without insurance. It’s not $30 now without insurance. It’s unaffordable for people. So I think they are looking into it, there’s definitely a push for it, but there are a lot of people that we are losing in that fight for accessibility. If you lose your insurance … you’ve got to have insurance or you can’t afford it.”

Faulkner put it more bluntly.

“The effort to better treat and cure diabetes is rendered meaningless if insulin reaches cost levels inaccessible to those who need it,” he said.

Written by: Richard Maloney, JDRF Volunteer