Kerri Orr was on Mammoth Mountain in California, perched at the top of a Black Diamond run she had no business attempting to navigate on a snowboard, when she noticed the date on her lift ticket.
“I looked down and was like, ‘Today is my 10 year anniversary with diabetes,’ and I was so proud that I was up there just living my life to the fullest,” Orr said. “So after that I’ve celebrated. My 20 year anniversary I went shark diving in South Africa. Because if I’m going to die by anything, it better be a shark than diabetes.”
Orr, 37, who lives in West Hartford, was diagnosed when she was 13 with Type 1 Diabetes, a chronic condition in which the pancreas produces little or no insulin, the hormone needed for the body to process glucose. Six months later, her younger brother was diagnosed with the same disease.
She’s grateful for a family that can help with the cost, which has skyrocketed in recent years. Even with insurance, her outlay, at times, was nearly $1,000 for one month of insulin and supplies — without which, she would die.
The price of a month’s supply has tripled in the past 15 years by some conservative estimates. And no one can say exactly why, for an existing drug with only incremental changes in recent years.
Connecticut legislators, following other states, hope to tackle the problem this year and it’s an issue that’s brought them together across the aisle. They agree patients who need a drug simply to stay alive should have easy and affordable access to it.
Lawmakers can set caps on prices insurers charge for insulin and other drugs, but the law can’t directly bend the economics that underlie the soaring costs.
Pharmaceutical and insurance companies both have a stake in the game. Critics say they profit off the lifesaving drug and the premiums — and state legislators are trying to figure out what they can regulate.
Even the federal government, stuck in a stalemate over health reform, is also looking at changes.
Caught in the middle are diabetics like Orr and Kristen Whitney Daniels, a Shelton resident who leads the Connecticut Insulin4All chapter. They can’t hold off purchasing their next month’s supply of insulin while legislators figure it out.
“It’s unacceptable that anybody should have to think about dying because they can’t pay for the only drug that can save their life,” said state Sen. Matt Lesser, co-chairman of the legislature’s insurance committee.
Getting there isn’t as easy as it sounds in a country that, nationally, has resisted price reforms in healthcare. That’s nowhere truer than in Connecticut, home of thousands of health insurance jobs.
Insulin reforms are part of a broad focus on reducing healthcare costs in the state this year. On Tuesday, Senate Democrats unveiled their priorities related to healthcare for the upcoming legislative session. On Wednesday Gov. Ned Lamont signed two executive orders aimed at curbing healthcare costs by increasing transparency in the medical and insurance sectors.
And while examining the entire prescription drug cost crisis is a concern, legislators said the focus on insulin and related supplies is its own priority because unlike many other medications, there is no alternative.
An estimated 355,000 people in Connecticut are diagnosed with diabetes. Without insulin to turn sugars into energy, glucose builds up in the bloodstream and can ultimately lead to death. There is no prevention and there is no cure, but the disease can be managed through prescribed insulin, taken in the amounts the pancreas would normally produce to regulate blood sugar.
“This is not an area where you’re talking about health options,” said Senate President Martin Looney, D-New Haven. “This is life or death.”
The details of how, exactly, the state would regulate and reduce the cost of insulin and supplies are still on the drawing board, though Senate Democrats have said it will be their top priority this year.
Looney suggested the state will model its law on similar ones already passed in Colorado and Illinois that cap the cost of insulin at $100 per month by limiting the amount insurance companies can bill. At least five other states are considering similar proposals this year.
In Colorado, the legislation is written so that insurance companies absorb the additional cost of the drug. In Illinois, the cap only applies to state-regulated health care plans, meaning a majority of diabetics in that state actually won’t be covered by the cap.
In both states, the law also enlists the state attorney general to investigate the rising prices of insulin and make recommendations back to the legislature, and neither state was able to find a solution that helps people who don’t have insurance.
Lesser said the legislature could come up with a way to cap the price pharmaceutical companies can charge for the drug, an approach insurance companies might favor but that pharmaceutical companies are likely to push back against.
The insurance industry blames pharmaceutical companies that set the drug costs as the root of the problem, and though some insurance companies are voluntarily capping insulin costs and absorbing the price difference on their own, others may be resistant, leading to a rise in premiums for everyone to offset the cost of drug caps on insulin and other drugs.
“We are currently evaluating legislation that we are seeing in several states to address the high cost of insulin, but we do have concerns,” said Cathryn Donaldson, communications director for America's Health Insurance Plans, the trade association for health insurance companies. “Overall, the focus on capping co-pays or implementing mandates to cap co-pays does nothing to address the underlying issue. The problem ultimately is the price of the drug. And the only entity who controls those prices are drug makers.”
Donaldson said a handful of insurance companies like Cigna, and its pharmacy benefit arm Express Scripts, have already capped the cost of insulin at $25 per month for people across the country. Though in Cigna’s case, patients can only participate if their employers opt into the change in plan, and the company covers less than 1 percent of the 23 million Americans who have diabetes.
Insulin manufacturers, which negotiate drug prices separately with private insurers, have said the increases are tied to innovation. Incremental changes to the formula, which aren’t proven to be astronomically more effective, allow the new versions of the drug to be covered by numerous patents which can also affect the cost of the drug and limit the availability of generics, according to a 2017 paper by The Lancet, a peer-reviewed medical journal.
In the states that have set a billing limit, the cap is specific to insulin but doesn’t cover all of the additional supplies required to manage the disease. Things like automatic pumps, which inject insulin directly into the body, and continuous glucose monitoring devices and other blood sugar test supplies, can add thousands to the cost of survival every month.
Looney said Connecticut legislators want to include supplies in the cost cap.
“We wouldn’t want the manufacturers to say, ‘OK the price of the actual insulin is capped, but we’re going to jack up the costs on all of the supplies that go with it,’” Looney said. “We’re looking at the whole package so they can’t just cost shift. Otherwise they could manipulate it so your costs are the same, so we do want to address that also.”
State Sen. Kevin Kelly, of Stratford, the ranking Republican on the insurance committee is also committed to helping diabetics gain access to insulin, and has suggested solutions that include helping diabetics better navigate a web of social services to find savings and free up money wherever possible.
While that approach doesn’t reduce the cost of insulin, it could help increase access.
Kristen Whitney Daniels, of Shelton, was diagnosed with Type 1 Diabetes at 15 years old. Her family had high-quality insurance that helped manage her diabetes well for most of her life.
But she knew as she neared her 26th birthday, the date she’d be forced off her parent's insurance and onto the high deductible plan offered by her employer at the time, she wouldn’t be able to afford the medication that had kept her healthy until then.
So she started rationing and hoarding her insulin supply, hoping to make it last as long as possible and that there would be a solution before it was too late. She also stopped paying for and taking medication for another autoimmune disease that, while it lowered her quality of life, wouldn’t kill her.
“I couldn’t get any relief,” she said, referring to price reductions for uninsured people, “because I had insurance even though I couldn’t use it.”
“It became crunch time. I was on my last vial and I knew that I would die without access to insulin. I was on my very last drops of insulin when I was able to find a community health center that could get me my insulin for essentially $14 when before they were saying $2,400.”
Last March, one of the companies that dominate the insulin market, Eli Lilly, pledged to distribute a generic form of Humalog, its brand name, $300-per-vial insulin, at half the price. But a survey conducted by the offices of U.S. Sens. Richard Blumenthal, D-Conn., and Elizabeth Warren, D-Mass., found the generic was not available in 83 percent of pharmacies. Many pharmacists were unaware of, or not adequately informing their customers, about the availability of the lower-cost alternative.
Daniels, now 29, leads the Connecticut Insulin4All chapter, and said her story isn’t unusual. Often people with diabetes who can’t afford to pay for insulin and supplies, even with insurance, will attempt to ration their insulin to make the supply last long. This can lead to drastic spikes and lows in blood sugar and cause severe health problems, including death.
It’s unclear what the long-term effects of rationing insulin will be on Daniels’ overall health — the rationing crisis is relatively new and unstudied — but for several months her A1C level (an expensive test to determine a person’s average blood sugar over three months, often used to diagnose diabetes) was higher than normal, and a cause for concern.
“We don’t know yet if that will lead to kidney disease or other complications,” she said. “My story is just indicative of a lot of other people’s and really shows some of the holes and problems with insurances and our health systems in general.”