Allie Marotta turned 26 on Dec. 10 and aged out of her parents’ health insurance. For the first time in her life, she had no way to pay for the expensive insulin she needs to survive her type 1 diabetes.
She’d been dreading the day for so long the dread has come to feel normal.
In anticipation, Marotta had stockpiled a four-month supply of insulin. When that runs out, she said she‘ll go to Canada to buy affordable insulin if she hasn't found a job with health benefits. Marotta paid $10 a prescription for insulin under her parents’ insurance, but now faces more than $3,000 in costs each month for her vials of insulin, syringes and blood sugar monitoring supplies.
“I’m not going to drop dead tomorrow,” said Marotta, who lives in Brooklyn and grew up in Patchogue and Bayport, where her parents still live. “But it’s preparation time for me now because I know what comes next.”
So on her birthday, she blew out candles at a celebration with friends, called 15 community health centers searching — so far in vain — for low-cost prescription insulin, and went to a meeting of Insulin4All, a group of activists lobbying for state laws to make insulin affordable for everyone.
It is still hard to accept that she must set aside what she loves — teaching theater arts — once she finds a job, any job, that comes with benefits. “A person for whom this is a life or death issue, you don’t get to have any other aspirations,” she said.
She is looking beyond the hodgepodge of programs — discount programs she says are difficult to get into or stay in for long, federal programs that are not easily available, insurance policies with premiums and deductibles she says she can’t afford — to government action. While there is some movement, help is not imminent.
Dilemmas like hers have spurred political activism and forced some political movement. Next month, in an approach gaining traction in other states, people with insurance in Colorado will have to pay no more than $100 in out-of-pocket expenses for their insulin each month. In Minnesota, many employer health plans have opted to limit employee costs per insulin prescription to $25. Recently, the House of Representatives passed a bill — not expected to pass in the Senate — to limit Medicare beneficiaries' out-of-pocket expenses and allow Medicare to negotiate prices on up to 250 pricey drugs, including insulin, with little to no competition in the marketplace.
The cost of insulin products, which have gotten more sophisticated and accurate over the past decades, has soared over that time, and they are produced under patent by only a handful of companies. Costs have gone up so much because the newer, more popular forms of analog insulin are more expensive to produce and are under patent and the three main U.S. producers have little competition.
Moreover, the United States has little regulation of drug prices, unlike countries where insulin costs less, and patients with no insurance or with high deductible and copay plans end up bearing the full brunt of the higher costs. Discounts often do not filter down to these patients, many of whom end up skipping doses or rationing their doses.
An old form of insulin is available over the counter at Walmart but activists such as Marotta say it doesn’t work as well for many people with diabetes and users need education on how to safely use it.
“Go to Walmart doesn’t work,” said Dr. Joshua Miller, a Stony Brook endocrinologist who also has type 1 diabetes and decries how cost and insurance practices can derail people from the type of insulin that best controls their disease. The type of insulin sold at Walmart “doesn’t meet the needs of every person with diabetes. It’s much harder to regulate, it’s truly antiquated.”
New York State has yet to enact legislation helping people with diabetes access affordable insulin, although a bill that passed the State Senate in June will now go before the Assembly. It would cap the amount of cost sharing an insurer can require for insulin and allow emergency refills of expired insulin prescriptions. It also calls for a state study of a drug assistance program making insulin more broadly accessible, modeled on the one that helped save lives in the HIV/AIDs crisis.
Even those with insurance find the high cost of insulin prohibitive. Melissa Passarelli, 30, has had to ration her insulin despite having an individual policy purchased on the state’s New York State of Health market exchange. High deductibles and cost sharing for her diabetes care take almost a fifth of her net income.
Her employer, nonprofit Docs for Tots in Roslyn Harbor, reimburses most of her monthly premium costs, she said. But Passarelli's yearly deductible is $4,000 and once she reaches that, she must pay half the cost of each vial of insulin, with her share almost $200 for each vial, she said.
Between doctor visits, insulin, supplies, tests and other expenses, Passarelli spent $8,194.96, or 18% of her net annual income, on insurance-related health items, she said. If she hadn’t rationed her insulin — using less of it than the amount prescribed as best for her — her costs would have been even higher, she added. Now she is considering a move back to her parents’ home in South Huntington, when the lease runs out on her Astoria, Queens apartment.
“I’m 30, I thought I’d be in a stable place right now,” she said. “Perhaps buying a house to rent out, but that just seems like a pipe dream to me at this point. I entered the world of nonprofits knowingly and I love the work I do, working in the field of early childhood policy, but I’m constantly worried about my future.”
The worry doesn’t end even when a person with diabetes is old enough to get Medicare, said Bob Parant, 66, a retired health industry executive, of Westbury. Costs for those who use an insulin pump device are covered under Medicare Part B, which covers 80% of the costs of medical services and supplies. With a supplemental policy, such costs could be covered 100%. But other forms of dispensing insulin, such as syringes or pods, are covered under the Part D drug plan, he said, “and the costs there are astronomical … that’s where you get into the doughnut hole.”
The Medicare doughnut hole had required beneficiaries to pay full costs after a certain cost threshold, until they spent enough to qualify for catastrophic coverage. The Affordable Care Act, however, has been gradually closing the donut hole. In 2020, beneficiaries will pay no more than 25 percent of the cost of their medications after they and their plan reach a threshold of $4,020 in drug expenditures. Catastrophic coverage then kicks in after medication expenditures reach $6,350 — up from $5,100 this year.
But costs are still high enough to cause problems. “Some people can’t afford their insulin,” Parant said. “They ration, they get help,” sometimes from online groups that share insulin even though that is not legal. Or people travel to Canada, he said.
“I think they need to provide those with diabetes first dollar coverage for lifesaving drugs, even under high deductible plans,” he said.
Parant has traveled twice to lobby in Washington, D.C., as a volunteer with the National Diabetes Volunteer Leadership Council, a small nonprofit that lobbies and advocates for educating consumers and providers.
Its executive director, Erika Emerson, said the group wants to educate those with diabetes about programs to obtain insulin at discounted prices, including a federal program called 340B that lets anyone obtain discounted insulin at community health centers (if, like Marotta is attempting to do, they can find a center that participates), and smartphone apps like GoodRx, Blink Health and InsideRX that provide coupons to cut drug costs. She wants pharmacists to be allowed to tell customers that insulin bought with cash can be cheaper than the price they’d pay using insurance and for people to know to use Costco or Sam’s Club for less expensive drugs. For links, go to the group’s website, ndvlc.org/reduce.
“No one should be paying $350 a vial and everyone agrees that is not what it costs the health plan or the pharmacy on a net basis. It’s basically a markup,” she said, noting that rebates and discounts off the manufacturer list prices may be swallowed up by the pharmacy benefit managers that manage drug prescriptions for insurers, by the insurers, the employers and by the pharmacies, rather than the consumer.
Emerson said her organization works with employers on how to structure health benefits so employees don’t have to pay hugely inflated prices for insulin before making their deductible. “We think people with diabetes should have zero costs for insulin,” she said. “A lot of employers are willing to do that.”
In Minnesota, Emerson said, employer health plans have opted to cap out-of-pocket costs for insulin at $25 per prescription. Employees who are able to afford the insulin they need to manage their disease remain healthier, with fewer complications and related costs, she noted.
But far too many patients suffer harm from the high costs of their lifesaving medication, said Dr. Miller of Stony Brook, who said many are forced to switch to “subpar” insulin. “At worst, they are rationing their insulin to the point of harm and patients are winding up dead. Every month I hear of a patient who died of insulin rationing or winds up in an emergency room.”
He called for a “fundamental change in the way medication pricing is devised in this country … The federal government needs to mandate an overhaul of the current system that results in price gouging for the patient.”
Marotta said she was asked by friends whether she even wanted to celebrate her 26th birthday, and she insisted she did. “I’m choosing to celebrate life,” she said. She even made a wish when blowing out the candles, she said. “I wished for Medicare for All, of course. I’m not kidding. It’s the best thing that could possibly happen to me now.”