Alexander Oppen of Eau Claire, Wisconsin, is 25, and that’s a stressful age for someone with Type 1 diabetes. He was already worried about being forced off his mother’s health insurance on his next birthday — but when his mom lost her coverage at work recently, with only one month’s severance, he had to act fast while thinking about the worst.
Oppen, like some 7.5 million other Americans, takes insulin. And he needs health insurance to afford it.
So while juggling one job as a welder in a custom hot rod shop where he is not offered benefits, Oppen also took on an extra 30 hours a week as a manager in a restaurant that does provide insurance.
In October, he’ll marry his girlfriend of three years, a 23-year-old cardiac nurse who will have her own policy for him to join. He can cut back his hours at his second job and focus on his passion: welding in the small shop where he works with a former teacher.
Working so much is draining, but Oppen is well aware of what it would cost him to go without: Under his insurance policy with the restaurant, six vials of the insulin he uses to regulate his blood sugar total $250, out of pocket, and last three months.
But he has the receipt that shows the full price, before insurance and discounts are applied: $2,039.99.
The alternative is rationing out the insulin that he can pay for while still setting aside enough for food and rent. But the risks are high: The effects of skipping doses can be seen within 24 hours — and be life-threatening. Over time, unregulated blood sugar can lead to heart attack and stroke at a young age as well as numbness and eventual amputation of toes or legs, retinopathy and blindness.
A lapse in the coverage Oppen uses to afford his insulin “is a very scary thing,” he tells PEOPLE.
“My insurance is something that I have to devote a lot of time to keep,” he says.
He’s not alone. While medical advances have made it easier than ever to live with diabetes, many patients today are consumed by financial worry. Headline after headline in recent years reflects what they say is a mounting price crisis for insulin and diabetic supplies — with potentially deadly consequences.
In 2017, the American Diabetes Association (ADA) gathered nearly half a million signatures on a petition asking for help from Congress and everyone along the supply chain. “Insulin isn’t a luxury, it’s the difference between life and death for those who need it,” the petition states. “Yet the cost of insulin is increasing at an alarming rate. It’s time for change.”
Among a plethora of Congressional hearings on drug pricing since then, there have been at least three on insulin alone. At an April hearing, lawmakers warned drug-makers that if they did not do something about the problem, the government would.
“If you think you can out-talk us, without any transparency, without any accountability, I just want you to know your days are numbered,” Illinois Rep. Jan Schakowsky said at one hearing.
While it is impossible determine the average out-of-pocket cost to patients, given the industry’s secrecy and complexity and the differences in each person’s required dose and coverage, there is data to show how much more expensive the life-saving solutions are becoming.
The list price for one long-acting insulin in the United States jumped by 252 percent from 2007 to 2016, according to a June 2018 report published by the ADA’s Diabetes Care journal.
Humalog, a fast-acting mealtime insulin that many people with diabetes prefer for its ease of use, costs consumers an average of $21 per vial in 1996. Today its average cost is around six times as much, even with a coupon, according to GoodRx, which tracks drug prices. Though even that number masks the reality for individual patients who can see much higher prices.
An older form of insulin, called human insulin, remains cheap. But unlike Humalog it requires patients to strictly plan mealtimes or risk their blood sugar dropping too low.
“A person who has Type 1 or Type 2 diabetes can have longevity close to that of a person who doesn’t have diabetes because of biomedical research advances over the last 20 years,” says Dr. William T. Cefalu, the chief scientific, medical & mission officer of the ADA.
But, Cefalu notes, the advanced treatments are not available to every patient. “You have to have access to the medicine and technology, and you have to be able to afford it.”
About one in four insulin-dependent people with diabetes reported taking less insulin than prescribed because they couldn’t afford the price, according to a 2018 survey of 535 people from the ADA.
The ADA survey found that people with diabetes who struggled to pay for insulin were three times more likely to have trouble maintaining their blood sugar within normal range and more likely to end up in the emergency room. More than a third of respondents reported making stark choices about whether to buy insulin or pay for doctor’s visits, other medications or fresh produce. They also reported having to weigh the costs of transportation, housing, education and even medical insurance based on the necessary expense of insulin.
Oppen and others with Type 1 diabetes say the cost of insulin is only the beginning. They are also billed for glucose monitors, lancets, lancet devices, test strips, pumps, insulin coolers, syringes and other supplies.
Families told PEOPLE they have given up vacations, taken out second mortgages and even filed for bankruptcy. Some are buying insulin on the black market or going out of the country to buy insulin over-the-counter. (There is intense interest in the cost of insulin in Canada, a short trip across the border.)
“If I had to pay $2,039 I would probably ration insulin, and probably eat less, and maybe not pay rent, I have no idea,” Oppen says, admitting the full price of the drug that keeps him alive is now twice his monthly rent.
With a co-pay card from the manufacturer, he may be able to bring down the price of insulin to $50 a month. Yet, even with that discount and after going through his $2,025 deductible, his total out-of-pocket cost for diabetes supplies is more than $600 a month, including bills for pump cartridges, infusion sites for the pump, transmitter and sensors for the continuous glucose monitor and test strips.
That’s not including several thousand dollars out-of-pocket for an insulin pump, should he need a new one. And that’s not including his share of medical insurance premiums.
“There’s something wrong there,” Oppen says. “If I didn’t have insurance or if I had a lapse, it would be cheaper for gas to go to Canada than to buy it at the CVS down the street.”
The system requires more than just money from patients: Oppen says it takes him hours to figure out what his share of the cost will be for each item and whether it will count toward his deductible. Sometimes he can’t get a price until after he orders it.
“I feel I am a money-making machine for pharmaceutical companies,” he says. ‘For the rest of my life they will profit off me, no matter what. They are just gouging me. I don’t have a choice because I need these supplies to live. Why can’t they make it that I can just survive in a normal way?”
How We Got Here and How It Could Change
Broadly, the blame for skyrocketing insulin and other drug price increases starts with pharmacy benefit managers, according to Stanford health economist Dr. Kevin Schulman.
Brought in by insurance companies and employers more than a decade ago to cut pharmaceutical costs, the managers gradually changed their business model, Schulman tells PEOPLE.
Manufacturers began setting a higher list price for pharmacies and then paying the managers a rebate off of the increase, Schulman says. In return, the managers promised to push those products — and to share the rebates with the insurance companies and employers.
All participants benefit from the escalating prices.
“There are too many hands in the cookie jar,” Schulman says. “This is not a pretty picture for patients with diabetes.”
There are other forces at work as well: A February report by STAT, a health news website, detailed how a lack of generic products in the marketplace, confusing government regulation, doctor preference for newer forms of insulin plus the steep manufacturer price increases have all resulted in the increased cost for patients.
For decades, according to STAT, insulin products were fairly inexpensive — but that has changed in the last 20 years, and the data shows it’s accelerating even more quickly.
“Everyone is at fault, which makes it hard to figure out how to fix it,” Dr. Walid Gellad, at the University of Pittsburgh, told STAT.
In 2017 dozens of insulin users sued the three companies that control most of the market, alleging consumer fraud for raising list prices on insulin by 150 percent over the last five years. The complainants said people were taking less than needed or using expired doses, with some patients even intentionally skimping on insulin in order to get sent to the emergency room where they could get it free.
The suit’s racketeering claims were dismissed, according to news reports, but a possible class-action suit was allowed to continue.
Politicians are saying enough. Leading the charge in Congress is Colorado Rep. Diana DeGette, whose daughter Francesca, 25, was diagnosed with Type 1 diabetes at age 4.
Among the stories DeGette has heard about the price increases was one mother who implored, “Insulin doesn’t make [my son] better. It keeps him, literally, alive.”
“Every family in America, just about, is touched by diabetes,” DeGette tells PEOPLE.
The Congressional Diabetes Caucus, which DeGette has co-chaired for the last decade, now has more than 300 members from both parties.
New Hampshire Sen. Jeanne Shaheen, who has a granddaughter with Type 1, has sponsored legislation related to diabetes in the past. Last year she tweeted: “My granddaughter used to say all she wanted was a vacation from her diabetes, and I wish I could give that to her.”
“The government regulators listen to us because we have power in numbers,” DeGette says. She recently pressed Medicaid and Medicare to pay for previously uncovered insulin pumps.
DeGette says her daughter was charged $300 for insulin at the beginning of this year because she had to start over with a new deductible. “And we have good insurance,” she says. “What about the people who don’t?”
At a Congressional hearing in April, industry executives blamed the rising prices on a broken system in which the increases were mostly to cover discounts and rebates drug-makers had to offer to be included in the market. In turn, one pharmacy benefit manager executive said, “I have no idea why the prices are so high, none of it is the fault of rebates.”
Rep. Schakowsky, a longtime consumer advocate, was not having it.
She lambasted the three major insulin drug-makers for keeping their insulin products “curiously close in price and way too high.” Pointing to the gathered executives, she vowed to pursue a transparency bill to keep them accountable.
“That will not stand in this Congress,” she said.
“We know that a huge number of people are not taking the insulin that they need because they can’t afford it. So then they get sick, and maybe they get sicker, and maybe they die because of it,” she said. “I don’t know how you people sleep at night.”
“Something is going to happen here if you don’t decide, in your own interests, to lower those prices so people don’t have to die,” Schakowsky said.
In May, Colorado became the first state to limit patient co-pays to $100 a month regardless of the dosage needed, which may help some who have insurance.
The three companies that dominate the insulin market, Eli Lilly, Novo Nordisk and Sanofi, all tell PEOPLE they welcome new legislation.
Novo Nordisk says for every dollar in sales, it paid out 68 cents to benefits managers and others in rebates, discounts and fees — but that without those payments their products could have been dropped by the managers, leaving patients without access.
The company’s financial share of each sale has been declining for several years, according to Ken Inchausti, a spokesman for Novo Nordisk.
The drug-makers are well aware that people are struggling. “As a company focused on improving the lives of people with diabetes, this is not acceptable,” Inchausti says.
All three companies offer financial assistance programs, and Sanofi says it provided more than 93,000 patients with free insulin last year. During the hearings on Capitol Hill, Sanofi announced it would sweeten its savings program for people paying cash. Starting in June, their insulin will be $99 per month for up to 10 vials and/or boxes of pens for anyone who is uninsured or paying out of pocket.
Novo Nordisk has been offering an old version of insulin for $25 a vial at Walmart and recently increased the income limits for free insulin. Eli Lilly announced in March that it would offer a new version of its fast-acting insulin for half the price. The new insulin lists for $137.35 a vial, or $265.20 for a five-pack of pens.
A per-vial calculation doesn’t capture the monthly cost for patients: Oppen, the Wisconsin welder months away from marriage, needs two a month — but some people with diabetes use as many as six or more a month.
The nation’s largest pharmacy benefit manager, Express Scripts, announced a recent change. In April the company said it would lower the out-of-pocket cost of insulin to $25 for a month’s supply, but only for people who have medical coverage by participating commercial insurance companies.
The American Diabetes Association says it would like to see lower prices across the board for all people dependent on insulin, under all insurance policies or without one, and for all types of insulin.
But while these reductions are a boon to those who can take advantage of them, Schulman, the health economist, points out that the pharmaceutical companies and the benefits managers are not changing their rebate business model.
“You may be able to afford your insulin, but you may not be able to afford your other medicines,” he says.
While morestates are proposing legislation, Rep. DeGette is thinking about a national solution by ending compensation that is based on a percentage of a drug’s list price, which has effectively incentivized companies to keep raising the price for patients.
She says she’d also like to update patient regulations, bring more competition to the market and add more transparency in pricing. She plans to introduce legislation this month.
“It’s grown up into a byzantine and opaque system,” she says. “There’s a complete lack of transparency in drug pricing. How pharmacy benefits managers and insurance companies negotiate, and whatever happens to consumers is very obscure.”
Losing a Life but Helping to Save Others
Whatever happens next will already be too late for Antavia Lee-Worsham.
A security agent in Cincinnati, she fell off an assistance program when she turned 21 in late 2015 and began rationing her insulin. “She knew she needed it, but she couldn’t afford it,” her mother, Antroinette, tells PEOPLE.
Antroinette, a divorced mom, has three other children, including another daughter with Type 1 diabetes.
Antavia “would use her grandpa’s [insulin], she would use her sister’s,” her mom says.
“I couldn’t get off of work, I couldn’t help her try to find the resources,” Antroinette says. “I wasn’t going to her doctors appointments with her.”
On April 26, 2017, Antavia’s younger brother found her body face-down in bed, with a towel wrapped around her and an empty insulin vial by her side. She was 22.
Antavia was actually still covered by the health insurance from her mother’s job as a finance specialist at a Cincinnati hospital. But the plan had a high deductible and required co-pays. Antavia’s insulin cost $100 to $1,000 a month, depending on how much of her deductible had been met, Antroinette says.
In addition to her nighttime security job at Delta Airlines, Antavia was working at the Bengals stadium so she could afford to rent a bedroom and live with her aunt. She told her mother she had changed her diet to require less insulin.
“You never get out of the hole,” her mom says.
Antavia died from diabetic ketoacidosis (DKA), her mom says. DKA, a serious complication of diabetes, results from high blood sugar and a lack of insulin causing the liver to break down fat and create ketones to feed the cells — but it inadvertently poisons the blood.
While Antroinette knew her daughter was skipping some insulin doses, she did not know the risk that posed.
“I wish I [had been] more educated on the importance of insulin, of DKA, of rationing, everything about it. I wish,” Antroinette says. “I did know she was skipping doses. I did not know what DKA was.”
In November, Antroinette traveled to Cambridge, Massachusetts, to protest steep price increases in front of Sanofi, one of the three primary insulin drug-makers in the U.S. She brought her daughter’s ashes with her.
“I miss Baby Girl — that’s what I called her, Baby Girl,” Antroinette says, remembering her cheerful daughter who liked to draw and be around her cousins.
“Anatavia was a funny, silly girl, and she didn’t like to talk about [diabetes],” Antroinette says.
“It’s too expensive, especially when you have a $3,000 deductible at the beginning of the year,” she says. “A vial in Canada is $40, and it’s over $300 here. Make it free. They can make it free.”
In June 2017, two months after she lost her daughter, Antroinette founded T1Diabetes Journey Inc., a nonprofit that educates people with diabetes and their caregivers about DKA, providing information at health fairs and community events. The group also offers financial assistance for diabetic supplies. Antroinette says she has given away 100 glucose meters.
“The good thing is I am able to now watch over [Antavia’s sister] Antanique and make sure this doesn’t happen to her — or anybody else,” Antroinette says. “It was definitely a lesson learned and now I’m able to help.”
She has one thing to say to the industry that holds so much sway over patients’ health and bank accounts.
“You know people can’t afford this drug. I don’t know who to blame it on, just fix the problem,” Antroinette says. “Figure out how we’re going to save more lives.”